By: Mike Berkson

An interesting situation occurred this weekend. It was one of those things that you had to laugh at, instead of putting your fist through a wall. I went to the Cubby Bear (Chicago) for a birthday party. The party was on the second floor. So, obviously I had to take the elevator. (Side Bar: The reason this location was chosen was because it was accessible.) The elevator was not a traditional elevator, it was a lift that was converted into an elevator. It was only for people in wheelchairs, not for anyone or anything else. On the way up the ride was fine, a little bit cramped and a little slow, but fine. The party was great, I got to talk with friends and discuss possible venues for Handicap This, all in all a pretty good party. When we were ready to leave, we got in the elevator and one of the staff members pressed the button and turned the key. We were there for a good 30 seconds before we realized that something was wrong. We just thought it was really, really slow. They tried pressing it a few more times, the consensus was that it was frozen. My next thought was the stairs. Unfortunately, the 20 stairs were too narrow and too steep. We did consider having a group of people carrying me down the stairs. What makes this even more difficult is the fact that about 4 years ago, I had back surgery to straightened my spine. In the process they fused 2 titanium rods to my back each one about 18 inches long. This made the situation even more complicated. My safety would have been compromised. Our next option was to call the Fire Department. The staff at the Cubby Bear was more than accommodating. They called people on their day off including the manager, just to help us and they were happy to do it. When the Cubby Bear called the Fire Department and explained the problem, the Fire Department told them that since it was not an “emergency” there was nothing that they could do. The only way that they could come was if I needed to go to the hospital. Needless to say, the whole scenario was beyond comprehension. Luckily, after an hour and a half, the good people at Cubby Bear were able to fix the elevator. Living with Cerebral Palsy, I have had my share of experiences like this, we are no strangers to overcoming adversity. But what would have happened if the elevator did not work?

Overcoming Cerebral Palsy

By Justine van der Leun
Gregg Mozgala, a 31-year-old actor, used to feel inhibited by his cerebral palsy, a neurological condition that occurs when a child’s brain is damaged before the age of two and afflicts a million Americans — most often in the form of poor coordination, weak muscles, and compromised posture. But with a load of determination and the help of an unconventional choreographer, Mozgala is now set to star in an hour-long dance piece in New York City. “I have felt things that I felt were completely closed off to me for the last 30 years,” Mozgala told The New York Times. “The amount of sensation that comes through the work has been totally unexpected and is really
quite wonderful.” While there is no cure for cerebral palsy, Mozgala’s success suggests that a change in approach to the condition can translate into a change in the lives and capabilities of sufferers. Mozgala’s journey began in 2008 when he met choreographer Tamar Rogoff After seeing Mozgala play the lead in “Romeo and Juliet,” produced by Theater Breaking Through Barriers, a group composed of disabled and nondisabled actors, Rogoff was inspired to create a dance piece for him. At first, both Mozgala and Rogoff imagined a 10-minute performance: Mozgala, who then walked on his toes with his upper body thrown back, assumed he could not
manage much more, and Rogoff figured she would create some basic choreography for him. But as they began to work together, her imagination and his capacities began to expand.

Rogoff, who knew little about cerebral palsy, taught Mozgala techniques to release muscular tension. She helped him locate areas of his body over which he had previously exercised no control. In agonizing and illuminating sessions, they worked together to increase his range of movement, employing dance and stretching techniques, and finding his true physical limits. Soon enough, Mozgala was able to stand up straight, to place both feet on the floor, as well as to feel
his Achilles tendon, which he had never before done. He called these revelations
“eureka moments” in the New York Times interview. “There are pre-existing structures in the brain that are very receptive to music, rhythm, and moving to music, which is why at a rock concert, everyone is swaying,” explained Mindy L. Aisen, MD, medical director of The Cerebral Palsy International Research Foundation. “The innate pleasure we get from music acted as a reinforcement for getting [Mozgala’s] body re-engaged and for forging new pathways in his brain.”Mozgala had been to physical therapists for over a decade, but his dance training
was different: While before, the therapists had moved his body for him, now he learned how to move his own body. Rogoff identified some of the physical patterns he had been stuck in and gave him specific instructions on how to overcome them, both in the studio and out. His daily life has changed: His balance and strength are so improved that he rarely falls; his gait is steadier,
and he is subject to fewer stares on the street. Most important, he no longer feels
mentally constrained by cerebral palsy. As he told the Times: “Everybody told me
there was nothing I could do,” he said. “That’s just what you hear, from the time
you’re five to adulthood. Tamar gave me an option.” According to Aisen, Mozgala’s story supports an open-minded, patientcentered approach to Cerebral Palsy and other neurological impairments. CPIRF is considering funding a dance therapy program, and at their Washington, D.C. Center, they have begun to use robotics and fun, motivational virtual games to help children use afflicted muscles. “Just as musicians have to practice to hone a motor skill, a brain that’s never had a chance to develop in areas needs the opportunity,” says Aisen. “We think we
can help anyone with cerebral palsy reshape their nervous system in a way.
It’s not a cure, but it is going towards a cure.”

By Melinda Sacks


for the Mercury News

Unlike his peers, though, he can't say most of what is on his mind. When he tries, what comes out are moans and grunts, unintelligible to all but close family members and caregivers.

The tall, handsome young man loves gospel music, cell phones, Taco Bell and knit polo shirts that show off his broad shoulders. But the inability to speak is a frustrating fact of life for Hills and his mom, Evelyn Glasper. Having a conversation is a lot of work — still, they both try.

"He'll go and get my purse and it is his way of saying, 'Let's go out!'"Š" says Glasper, a single mother who is on disability for chronic back pain and depression. "People underestimate how much he understands and how much he can communicate. It's just that sometimes I am the only one who can understand him. And it is really frustrating for him."

Born with cerebral palsy, Hills struggles with the most basic tasks. An in-home caregiver must be with him at all times, helping with everything from getting dressed to taking a shower. He can walk, but has problems with balance, so a helping hand often is necessary.

The cozy living room of the family home in East Palo Alto is a virtual photo gallery of Hills and other family members, many of whom live in Evelyn Glasper's home state, Louisiana. Over the mantel is a framed painting of a man stepping off a cliff, into the air above what might be an ocean.

"That image is about blind faith," Evelyn says. "Knowing God is there."

Going to church is one of Hills' favorite outings, she says. He loves to get dressed up and is so fond of it that they go to their own church on Saturdays and with friends to another church on Sundays.

"We've been friends since he was very small," says Jennifer Jackson, Hills' daily caregiver, a neighbor and friend who is often at the house.

Brandon's affection for her is obvious as he gives her a kiss on the cheek and sits by her side as she talks.

"Brandon's 24 and his mom is over 60, so it is important we get a means for him to communicate with other people," Jackson says. "It is every mother's fear that they will leave their children. The more we get Brandon ready to be independent in the world, the more secure his mom would feel. We want to be sure he has the ability to live a good quality of life."

What would make life easier for Hills and his mother is a speech-generating electronic communication device that would allow him to point to scenes and symbols that represent what he wants to say. Donations in increments of $50 will go toward its $3,285 purchase price.

A sturdy tricycle customized for Hills' special needs ($1,369) would help him have more mobility. And gift cards ($25 each) for clothes or music would be much appreciated.

Hills doesn't sit around feeling sorry for himself. He approaches each day with enthusiasm and a grin.

When it is time to leave for his "school" — an adult care center in Menlo Park where he goes weekdays — he's is all smiles, grabbing his navy backpack and heading to the car.

By Michelle Diament
November 25, 2009
For three decades Gregg Mozgala struggled to walk with cerebral palsy forcing his body up on its toes and wavering from side to side. But at 31, that’s all changing thanks to a choreographer.

Mozgala, an actor, has been working with Tamar Rogoff for just eight months, but is slowly gaining use of muscles and tendons that had been off-limits all his life. In intensive sessions, the two work on one area of the body at a time focusing on tension-release. Unlike physical therapists he’d seen in the past, Mozgala says Rogoff has given him the key to access his own body.

The result is that Mozgala can now walk more smoothly and doesn’t fall like he used to. And it proves what scientists have come to believe about the brain — that it’s constantly changing and able to grow.

The pair’s success is also yielding a four-person hour-long dance premiering in December in New York City, much more than the 10-minute presentation the two envisioned at first, reports The New York Times.

Published online on Monday, Nov. 16, 2009
By Ron Orozco / The Fresno Bee
About the series

The wish: Criselda Ruiz wishes for an EasyStand Magician chair. Cost: $2,236

How to help: For the 17th year, The Fresno Bee, in partnership with the United Ways of Fresno, Tulare and Madera counties, is publishing Wrap Up a Wish, a series of stories about families, individuals and organizations with special needs -- and inviting readers to help with cash contributions. It's The Bee's hope that you, after reading these stories, will help make your neighbors' wishes come true. Just use a coupon that will appear inside The Bee through Dec. 10 to designate the recipient of your donation. On Christmas Eve, we'll follow up with a report on your response to Wrap Up a Wish.

Criselda Ruiz is the mother of seven children, including two sets of twins. She says she loves all her children the same but devotes quite a bit of attention to Janessa, 7. Janessa has cerebral palsy. All the other children, ages 2 to 13, are healthy, including Janessa's twin, Jonathan.

At 6 months old, Janessa began hemorrhaging. Doctors diagnosed her with cerebral palsy, a disorder resulting from damage to the brain that can affect coordination and muscle movement.

She wears leg braces and can't walk. She speaks just a handful of words, including "agua."

"I still love her either way," Ruiz says, tears welling in her eyes. "She's my special kid." The doctors told Ruiz that Janessa needed to sit up on her own by age 5. Otherwise, it may be harder for her to eventually walk on her own.

Sitting up hasn't happened yet -- and that concerns Ruiz.

Doctors believe an EasyStand Magician, a system that helps support a child in sitting and standing positions and can be easily moved, could help the girl. The device costs more that $2,000.

Ruiz's income is limited to $486 she receives monthly from Fresno County to care for Janessa. She lives in government-subsidized housing and receives food stamps.

"It's hard every month," says Ruiz, who has been separated from her husband for six months. "After all the bills are paid, there's a little left."

Janessa previously attended Storey Elementary School, which offered therapy programs suited for her. For a while, she needed the help of oxygen tanks. She now is in the second grade at Lane Elementary School.

Ruiz says Janessa is constant with her smile. "She is always happy," Ruiz says, adding that she is hopeful that Janessa will be able to walk.

"I pray for her all the time."

The reporter can be reached at rorozco@fresnobee.com or (559) 441-6304.

Your world is turned on its head and suddenly even the everyday tasks that we all take for granted become so much harder.

She and husband, Bernard, are full-time carers for their grandson, Kyle.

The 12-year-old has cerebral palsy, epilepsy, asthma, global development delay and learning difficulties.
“Caring for a disabled child you tend not to go out and about as much,” says Mary, 61.

She considers the family lucky as Kyle is mobile, but she says: “People whose children are severely disabled can find it difficult to even go on the bus - simple things that we take for granted.”

That is why the Middlesbrough couple decided to join Parents 4 Change, a network that brings together parents, carers and service users to share their experiences and work alongside the professionals to find solutions to everyday challenges.

“We have learned an awful lot about different disabilities and how people cope,” says Mary. “It makes you feel as though you are not alone and it puts your own child’s disabilities into perspective.”

Chloe Levine was born seemingly perfect — she was the happy and healthy baby her parents had dreamed of.

But by the time she was 9 months old, Chloe was not reaching the milestones her older sister Shayla had met at that age.



Cord Blood Reverses Cerebral Palsy in Colorado Girl - Incredible Health - FOXNews.com

Paris - Diagnosed with severe cerebral palsy, 32-year-old Anne Lamic spends her days in south-eastern France mostly in bed, surrounded by stuffed animals and dolls. She cannot speak or walk, and she sometimes has seizures.


Disabled daughter, live on web: News24: SciTech: News

Growing non-profit devoted to helping families of children with cerebral palsy and brain injury commits to mission of informing and supporting parents

PHILADELPHIA—Danielle’s Foundation, a growing non-profit organization dedicated to helping parents of children with cerebral palsy and brain injury, announces the publication of its new book, Getting the Therapy, Benefits, and Resources Your Child Needs: A Guide for Parents of Children with Cerebral Palsy and Brain Injury.

Authored by Richard P. Console Jr., one of the volunteers at Danielle’s Foundation, the book was written to help parents navigate the complexities and challenges associated with successfully raising children with brain injury and cerebral palsy.

The comprehensive, 176-page guide includes the following topics:

• Understanding your child’s diagnosis, and what it means for the future
• Funding your child’s care
• Securing effective and cutting-edge therapies
• Negotiating successfully with your insurance company
• Demystifying the often confusing world of government benefits
• Ensuring your child receives the education he or she deserves
• Estate planning for families of special needs children

“My reasons for writing this book are personal,” said Console, who helped found Danielle’s Foundation in memory of Danielle Vick, the daughter of a friend who passed away in 2008 from complications associated with anoxic brain damage at just 4 years old. “While Danielle’s life was short, it was incredibly inspirational, and though she is no longer with us, we take comfort in knowing that we can make her legacy live on forever”.

Console said the purpose of the book is to educate and empower families of children with brain injury and cerebral palsy, so they can effectively advocate for their children. While he admits that families of special needs children face difficult challenges, he feels that with knowledge and education comes hope. “Every parent wants the best for their child, but getting the benefits their child needs is not always easy, and a lot of parents don’t know where to turn for help and support. We want Danielle’s Foundation to be that guiding light to which families can turn.”

“Getting the Therapy, Benefits, and Resources Your Child Needs: A Guide for Parents of Children with Cerebral Palsy and Brain Injury” is FREE to parents who call Danielle’s Foundation today toll free at 1-800-208-3494.

Parents interested in learning more about Danielle’s Foundation, and the support and services it offers, may visit www.DaniellesFoundation.org for more information.


About Danielle’s Foundation

Danielle’s Foundation is a non-profit resource that is committed to helping families of children with cerebral palsy and brain injury gain the knowledge to secure the therapy, benefits, and resources their children need. It was created by a team of grassroots volunteers whose mission is to help parents navigate through the challenges and complexities that arise while caring for their children. Their website, www.daniellesfoundation.org, also offers hundreds of articles related to treatments and therapies, education, estate planning, and legal and financial issues. Join Danielle’s Foundation today to become a part of their support network, where parents can unite to share and exchange their knowledge to educate and empower each other via their online forum.

Contacts

Danielle’s Foundation
Kristin Testa
1-800-208-3494
press@daniellesfoundation.org

hi my name is DAWN i am 44 yrs old and have a disabillity called cerebral palsey hemipligia which effects my rt side i try not 2 let it get the better of me altho some times it does get me down i live my life as full as it allows i have 4 ablebodied children aged 21 19 18 17 and 3 beautiful grandsons also able bodied im also divorced my choice lol and live very happily without x lol my disabillity doesnt stop me being a nice person and being funny and careing and very strong minded helps deal with the down falls of what i was born with so i hope by telling who ever reads this a little about me helps them if they have a disabillity 2 deal with that its not that bad and u can live your lives 2 the best of your personal abillities take care enjoy your day if you would like 2 msg me then feel free hope 2 hear from u soon bye 4 now

By Denise Richardson

Staff Writer

ONEONTA _ Kieran Jennings and his classmates at Valleyview Elementary School took a math test Thursday.

The pupils picked up pencils. The room grew quiet with concentration.

Kieran, 8, carefully wrote answers on a sheet from a workbook, as his peers at nearby desks recorded and checked figures and sums.

The quiz time was a short spell in a morning busy with reading, writing and listening activities in the second-grade classroom.

Kieran, who has cerebral palsy and uses crutches to walk, kept pace with the schedule. He readily moved around desks, chairs and tables, and from one academic assignment to another.

"He puts forth a lot of effort," Judi Visnosky, his teacher, said. Kieran is among 12 students in her class. At the beginning of the school year, Visnosky said, she moved a table to make room for Kieran's wheelchair, but otherwise there has been little need for other accommodations.

He is treated just "like everyone else," Visnosky said. Kieran is part of the group, she said.

He sits on the floor with classmates during reading time, participates in question-and-answer sessions and plays in gym class.

Coping with the challenges of cerebral palsy seem an accepted part of daily challenges for Kieran, who said his favorite class is gym.

His physician, Dr. Joseph Dutkowsky, said he hopes the sight of crutches and wheelchairs used by children with CP will "melt away," and that people will grow to know Kieran and others as individuals with goals, desires and other human attributes.

Keirstan and Tom Jennings, Kieran's mother and father, are among parents, physicians, physical therapists and children's advocates who signed up

for the Bassett-Columbia Symposium on Cerebral Palsy, held at The Otesaga Resort Hotel in Cooperstown on Friday. The program, organized by Dutkowsky, was designed to provide updates on available treatments and venues to discuss the effects cerebral palsy has on individuals and their families.

Cerebral palsy is a group of disorders that have an impact on a person's ability to move and maintain balance and posture. The condition is caused by an injury to parts of the brain, or as a result of a problem with development, the CDC said. Often the problem happens before or soon after birth.

Dutkowsky, a pediatric orthopedic surgeon at Bassett Healthcare, said the condition is an injury to transmitters, or the motor part, of the brain. CP must never be confused with mental retardation, he said, and most people with CP have normal intelligence.

According to the CDC, one in 278 births in the United States results in a child with CP.

More infants with low birth-weights are being saved through skills of medical staff, Dutkowsky said, and the result is a growing number of individuals with CP in schools, work places and communities. Research also is advancing treatment for CP, which gives hope to families and patients, said Dutkowsky, an associate clinical professor of orthopedic surgery at Columbia University. His seminar topic at the symposium focused on how children with CP make a transition into adulthood.

Bassett Healthcare and NewYork Presbyterian, the hospitals of Columbia and Cornell universities, were symposium sponsors.

Early diagnosis, early intervention

Kieran was born prematurely and spent two months in the neo-natal intensive care unit at Albany Medical Center, his parents said, and he battled fungal meningitis.

Physicians were "very careful to not say" Kieran had cerebral palsy, Keirstan said, but a physical therapist confirmed the condition when Kieran was 6 months old. Tom said he remembers the milestone when a pediatric developmental neurologist said his son wasn't mentally disabled; Kieran was 10 months old, he said.

Keirstan said the fact that she and Tom were teachers in the Oneonta School District helped them feel confident about the support and instruction their son would receive.

She teaches art, and Tom is in his second year as a principal at Schenevus Central School, after having taught social studies at Oneonta High School. Before Kieran started school, each parent took two years off work to be home with Kieran and give him the hours of daily physical therapy he needed.

The Jennings said they remembered when Kieran asked about how long he would have cerebral palsy.

Kieran one day asked, "When I'm in second grade, will I have CP?" Yes, his father replied. Third grade? Fourth? Yes. Yes.

Keirstan said she was holding back tears. Tom told Kieran, "You'll have it all your life."

After a thoughtful moment, Kieran asked if they could go to Ruffino's Pizzeria for dinner.

Kieran attended pre-kindergarten at Greater Plains Elementary School and kindergarten and first grade at Valleyview. His parents said his teachers and the school staff worked hard to make Kieran's academic and social experiences successful.

More second-grade lessons

Teaching assistant Marilyn Bailey is an integral part of Kieran's community. She said she meets Kieran as he gets off a school bus in the morning, is nearby most of the day to help with academic and physical tasks and sees him to the bus after school. When he needs help, she is there. She is a partner in relay races, she said, and they sing in the elevator when no one else can hear them.

"He's just a delightful child," Bailey said. "He has a sense of humor. ... He's very agreeable,"

In the classroom, Kieran has a chair with wheels on the back legs. When at his desk, he uses a seat belt to prevent falls. He will walk, using crutches, to move about the classroom, and a wheelchair always is nearby for use in case of an emergency.

Kieran has trouble with zippers, she said, and he is rather easily distracted. Sometimes wanting to help him is a natural inclination, she said, but the greater goal is teach him to do things for himself and develop skills to further the independence he already is showing,

"He's very independent, but he's still learning," Bailey said. "I'm just there `in case.' ... I'm still learning to work with him."

Hard work leads to success

Tom Jennings said, with a smile, he wants Kieran to become an "alpha male." Jennings said he hopes his son becomes ambitious, self-sufficient and is happy. His son must continue physical activities throughout life, he said, and he is wondering about weight-training and future sports participation. His mother said she hopes Kieran will go to college and "finds a job he loves."

Kieran already has gained self-confidence that grows from facing and succeeding at challenges every day, Tom Jennings said.

"Hard work trumps talent _ every time," he said. "He's learned that if he doesn't quit, he'll succeed."

That earned success is an important lesson that some adults haven't learned, the Jennings said. They also attribute Kieran's success to the work of physical therapists who refused to let him quit.

Liam Jennings, 9, a fourth-grader at Valleyview, said his favorite activity with Kieran is to "run around and wrestle."

"Kieran is the best brother," Liam said.

Tom Jennings said Kieran is a hard-worker, empathetic, kind and inclined to play well with other children.

Skyler Payne is a classmate who enjoys spending time with Kieran, the teachers said.

Skyler, 6, said he and Kieran like to play with Matchbox cars and color.

"We also love Monster Jam and Transformers," Skyler said. They play catch, and Skyler said when they play tag, "I walk slow." Kieran is a "100 percent" friend, compared to others who are "99 percent," he said.

"He really is a good friend to me," Skyler said. "And I am really a good friend to him."

To the Editor:
Cumberland Times-News

I am writing, hoping you will help raise awareness about Rett Syndrome. It’s the leading cause of severe impairment in girls, yet the general public still doesn’t know about it. A baby girl is born every five hours with this debilitating disease.

Imagine: symptoms of autism, cerebral palsy, Parkinson’s, epilepsy and anxiety disorders ... all in one little girl.

Our family does not have to imagine this, we are living it. My 21-year-old daughter Amanda was diagnosed with Rett Syndrome in February 1991.

Rett Syndrome is the most physically disabling disorder of the autism-spectrum disorders.

However, it’s the only autism-spectrum disorder with a known genetic cause. Primarily affecting girls, Rett Syndrome often strikes just after they have learned to walk, speak few words, and begins to drag their development backward.

This debilitating syndrome includes symptoms seen in many other severe neurological and neuropsychiatric disorders on which Rett research may shed light.

These include many of the following: regression, loss of speech, motor control and functional hand use; orthopedic problems including scoliosis and osteopenia; impaired cardiac, circulatory and digestive functions; autonomic instability and sleep disturbances; many varieties of seizures, often untreatable; autistic behaviors and sensory issues; Parkinsonian tremors; dystonia; anxiety and apraxia.

Currently, there are no effective treatments for Rett Syndrome. Most girls survive into adulthood and require total, 24-hour care. As of now there is no cure.

But, by raising awareness and continuing to fund research projects, we may be able to make a difference in the lives of girls with Rett Syndrome, and their families.

In 2007 the journal Science published the work of Adrian Bird, Ph.D., demonstrating the reversal of Rett Syndrome in mature mouse models with late-stage disease.

Days away from death, these animals recovered normal function and became indistinguishable from healthy mice in a matter of weeks.

This singular achievement has catapulted Rett into new realms of possibility and positions Rett Syndrome to be the first curable childhood neurological disorder. Rett Syndrome, unlike so many disorders (autism, Alzheimer’s, Parkinson, MS, etc.) has unique advantages: a known cause (a gene, known as MECP2), excellent animal models that faithfully mimic the human disorder, the prospect of reversibility and fast-paced research progress in the last few years.

There are clear treatment approaches that are currently being explored. The ideas, people and projects are in place. Funding is needed to execute this critical work.

As printed in a www.eurekalert.org/

pub_releases/2009-09/irsf-iaf092109.php public release announcement:

On Sept. 21, 2009, the International Rett Syndrome Foundation announced that it will provide $200,000 in 2009 to support a newly proposed clinical trial with a growth-factor based treatment for Rett Syndrome.

The study will be carried out by a team of clinical trials specialists at the Boston Children’s Hospital, led by Dr. Omar Khwaja MD, PhD and will be the first potentially disease modifying therapy ever to be tested in Rett Syndrome patients. Investigators will test a drug called Increlex.

“We are pleased to announce the funding of this groundbreaking new clinical study which presents a novel therapeutic strategy for the treatment of Rett Syndrome” said Dr. Antony Horton chief scientific officer at the International Rett Syndrome Foundation.

“This study will be carried out by a collaborative network of leading clinicians and neuroscientists in some of the World’s most prestigious research institutes at the cutting edge of biomedical research. Through our funding of this study we demonstrate our commitment to moving forward the most advanced treatments to prevent, treat and ultimately reverse Rett syndrome,” he said.

Ronna Reid

Rawlings

By Nancy Badertscher


The Atlanta Journal-Constitution

1:34 p.m. Saturday, October 10, 2009

Cody Holloway travels the halls of his Sandy Springs high school in a motorized wheelchair.

“The real deal on wheels,” says the sign on the back.

That combination — chair and slogan, disability and attitude — tells you something important about Cody, 14. Children with cerebral palsy may or may not think about the future in a different way from children without it. But in Cody’s case, they run for class president.

“Believe it or not, it actually started out as a joke,” Cody said recently.

Maybe so, but the idea took hold. It was last year in Jennifer Macke’s eighth-grade science class at Ridgeview Charter School that students sat pondering major milestones that might be reached by the time they celebrate their 100th birthdays.

Each student’s timeline was discussed, and when they got to President of the United States Cody Holloway, all of the class “loved it,” Macke said.

And last month he was elected ninth-grade class president at Fulton County’s Riverwood International Charter School.

“If Cody had said he was going to rule the world, I would have said: ‘That sounds about right,’ ” Macke said. “He’s certainly not one to let his disabilities hold him back in any way, shape or form.”

Cody navigates the halls in his wheelchair. A full-time aide at school helps him maneuver through crowded class changes, scribe his answers on standardized tests and interpret his labored speech, especially first meetings.

As candidate for class president, Cody billed himself “the real deal on wheels” and vowed to be “a voice” for students with teachers and faculty.

But he had more than a catchy slogan. His classroom aide, Brady Radford, was his strategist and helped take the campaign to Facebook. His dad had the title of campaign manager but insists he was strictly on the sidelines.

“He did his own thing, and I got out of the way,” Jeff Holloway said.

Two teachers pitched in so his televised message to voters was closed-captioned, bringing clarity to some of Cody’s pronunciations.

Whizzing around in his chair with “the real deal” slogan on the back, Cody solicited votes up-close from classmates, many of whom he knew in middle school.

“He decided since he drives this baby everywhere, why not use it as rolling advertising,” Radford said with a hand on Cody’s wheelchair.

Cody keeps up — especially with news and sports. As a candidate, he promised to keep his classmates abreast of the latest at school and in the community.

Students, like friend and fellow ninth-grader William Cormier, rallied behind him.

“He’s really friendly with everybody,” William said. “He also was very determined.”

Hannahkohl Almire said she watched Cody’s televised campaign speech and was impressed. She also liked his “real deal” slogan. “It was really cute,” she said.

Elections for class president were held in early September. Cody was declared the winner for the ninth grade, though the actual vote counts are never revealed.

“The biggest part was for students to realize that Cody’s cerebral palsy didn’t affect his mental abilities, only his communication and mobility,” said Joel Kadish, a Riverwood teacher and the faculty sponsor for student government.

The win was no surprise to Cody’s mom, dad, brother and sister. “We expect him to do good,” his dad said. “[He] quickly becomes Mr. Popular” wherever he goes.

Cody, who blogs on his beloved Detroit Red Wings and the Crimson Tide, ponders new places he might go — new what-ifs along his timeline. There’s nothing serious in it about himself as U.S. president, but Cody said he would like see one more “open to the needs of the disabled.”

Cody wants to be a sportswriter.

“He told me that all he wants is for everyone to see that just because someone has a disability doesn’t mean that they are not capable of being successful. They just have to work a little harder sometimes,” Cody’s dad said.

Adam McGahagin interviews Brandon Ryan — Writer, Author, Living with Cerebral Palsy


Enoch Magazine) Brandon, you have been diagnosed with Cerebral Palsy, what does your typical day look like?

Brandon Ryan: Well, some days I open my eyes, look out the window and then slam my head back down into my pillows. Some days I just want to sleep. But then I realize that I have to get up, I have to make something of the day I’ve been given. Some days are easier than others. Some days, I feel like I’m on cloud nine, and other days I just feel so worn out. I spend a lot of time promoting and marketing my first book. I try and remember that there are people in this world that believe in me. But some days I get down and think “What’s the point of all this?” I day dream a lot, I think every writer spends a huge chunk of time, day dreaming, studying and reflecting. But really, I’m just like anybody else, I get up and I work from nine to five, sometimes later.




Living With God AND Cerebral Palsy — Brandon Ryan Interview / www.enochmagazine.com |

How many times have you honestly and earnestly shared your hopes and dreams with not only the people closest to you, but friends, collogues and those who claimed they could help; only to hear words that hamper you and held you back. How many times were you stifled? And, how many times were you and your abilities to move forward held back. Did you feel trapped, frustrated, and beside yourself? Did you wonder when your chance was going to pan out? But instead, you were no further along on the pathway to the life you wanted to lead.

Well, my dear friends, I am writing this article because I have spent a lifetime not listening to those “Pearls of Wisdom.”

Again and again in every aspect of my life, I have turn the other check and found a way to accomplish what every expert and even my beloved family thought was impossible. But I “dreamed the impossible dream, and fought the unbeatable foe.” There are many times in my own personal life when I can remember reaching out to my mother, asking for help to get an education at a time when disabled people, with learning disabilities were not getting degree’s at all, and hearing my mother say… “Why don’t you just accept yourself the way you are instead of forcing and fighting your learning disability to make the impossible happen. Upset, and even more determined, I kept walking through the storm. I kept forging forward even though I was told what I was told. I smiled, grinned and beard it, but was not going to let my mother’s words and her beliefs about me affect me or hamper my quest.
While I knew my mother was being very loving toward me, I also knew that I would not have a place in society, and at the table if I did not push forward and make every attempt and effort to make my life happen.

When I finally got my degree no one was happier than my mother and me. She was the only one who knew what I went threw day in and day out. She came up to me, wrapped her loving arms around me, and hugged and kissed me in the fashion I knew so well. Then, all of a sudden, I found her whispering in my ear… I’m sorry Kranalala” You don’t know, or maybe you do know what this meant to me. It made me radiate with happiness. It made me radiate from within out. And, it made me radiate with sheer joy and bliss because I had reached one of my first unreachable dreams. It was not just hearing my mother’s words of acceptance and love, but knowing that I listened to myself, my heart, and my drummer, and followed a long and arduous pursuit of mine, of which I had just accomplished.

On that day of mine, I learned one very important lesson. That lesson was to always follow your own heart and to stay true to your own dreams and what you know about yourself. People can say what ever they want. But, if you know the truth within yourself that’s what matters! No matter what is said, there are always ways one can still make things happen. You can set yourself free and you can set yourself apart from everything other people say and think about you. You can hold your head high, reaffirm the truth of your own self and own abilities, and walk past and through all obstacles. It is all up to you. It is in your own attitude and belief. Know one can take that away from you if you truly believe in yourself. It may not be the next day, week, month, or year that you get whatever you desire. But it will happen if you stay the course.

You don’t have to be mean, nasty, or get in people’s faces for giving there own opinion, but you can rise above, be eloquent and poised, and accomplish your goals with dignity in a timely, peaceful manor.

www.fdlreporter.com
By Stacy Ellingen
Special to The Reporter

Is the economy ever going to get better?

Where are the jobs?

Will I ever get a job?

These are the questions going through the minds of recent college graduates.

I ask myself these same questions daily, except I have some extra concerns to worry about.

Because of oxygen loss at birth, I was diagnosed, at age 3 months, with Athetoid Cerebral Palsy .

CP affects every part of my body. My muscle tone fluctuates, which makes simple tasks seem impossible. Except for when I'm sleeping, my body is always moving. I need help with all of my basic needs (dressing, toileting, feeding, etc.) I use a power wheelchair to get around and a communication device to speak with others.

Despite having a disability, I've been able to accomplish far more than many people expected. After a couple of years of early childhood classes, from kindergarten on, I attended regular classes. A one-on-one assistant was assigned to help me in the classroom. I did almost all of my schoolwork on the computer and had accommodations as needed. Even though assignments took me much longer to do, I never took any assignment modifications. I graduated from Fond du Lac High School in June of 2003.

Moving on to college

Graduating from high school was a big accomplishment, certainly, but I knew I wanted to go on. In the fall of 2003, I started at the University of Wisconsin-Whitewater. Before deciding on UW-Whitewater, my parents and I did a lot of research. We had to look at different things other than what a "normal" prospective college student would. Things such as accessibility, academic support services and personal care services were critical when I was looking at colleges.

UW-Whitewater is nationally known for specializing in serving students with physical disabilities. There's a center called the Center for Students with Disabilities where all of services for students with disabilities are located. Services include note taking, testing services, alternative media, transportation, physical therapy, and many others. There are also in-class aides for classes that have labs.

I started out majoring in business, but after struggling through a couple econ classes and an accounting class, I switched my major to advertising with a multimedia minor. Because assignments took me longer to complete, for the first few years, I was unable to take the full number of credits. Therefore, it took me a little longer, but I graduated in May. I can't even begin to express how thankful I am that I went on to college. It helped me become so much more independent and self-confident.

After graduation, I moved back home to Fond du Lac. Currently, I'm looking for a job and working on getting an apartment set up. I'm working very part-time as an online mentor for high school students with disabilities.

Dream career

My dream career is to design publications for a company. I'm working with the Division of Vocal Rehabilitation and disability employment agency to help me get a job. With the job market as tight as it is today, it will be a challenge for me to land a job. I will have to prove that, despite my disability, I will be beneficial to the employer. This isn't an easy task.

To be fair to the employer, I'll have to explain my situation and the accommodations I will need. I'm well aware that revealing this will automatically put me at a large disadvantage, but it's something that needs to be known.

In my classes, I've learned that because of tight deadlines, some companies work in a very fast-paced environment. That will be something that I will have to discuss with the employer.

Because of my physical limitations, things take me much longer to complete. People who know me know that I'm a very hard worker, and I won't stop working until the project is done. I'll have to prove that I'm dedicated to the job.

I have a portfolio that I can show which not only includes articles I've written for the paper, but also projects I've done. This will provide the employer with a sample of my capabilities.

Eventually, I'd like to work in an office setting, but I'm aware that when I first get a job, I'll most likely be working from home. If and when I work in an office, DVR will work with the employer to provide the accommodations I'll need. I'll need accommodations such as accessible doors, an accessible restroom, an adapted computer desk and an adapted keyboard.

Hiring people with disabilities adds diversity in the workplace, which builds companies' reputations. It shows that the company is willing to work with people with disabilities. It may take awhile, but I'm confident that I will find something right for me. I'll put it this way — I won't give up until I do.

Additional Facts
Disability series
Today’s personal stories by Stacy and Deb Elligen are part of a 4-part series by The Reporter that focuses on people with disabilities.

Monday’s feature talks with employers and services that help the disabled find employment and highlights the U.S. Census Bureau latest disability figures in Fond du Lac County.Tuesday we talk with Alto resident Don Saffron, who has started his own business.

October is observed as Disability Awareness Month to help empower Americans with disabilities through awareness.

RULES FOR COMMUNICATING WITH PEOPLE WITH DISABILITIES

1) Speak directly rather than through a companion or sign language interpreter who may be present.
2) Offer to shake hands when introduced. People with limited hand use or an artificial limb can usually shake hands.
3) Always identify yourself and others who may be with you when meeting someone with a visual disability.
4) If you offer assistance, wait until the offer is accepted.
5) Treat adults as adults. Never patronize people in wheelchairs by patting them on the head or shoulder.
6) Do not lean against or hang on someone’s wheelchair.
7) Listen attentively when talking with people who have difficulty speaking and wait for them to finish.
8) Place yourself at eye level when speaking to someone in a wheelchair or on crutches.
9) Tap a person who has a hearing disability on the shoulder or wave your hand to get his or her attention.
10) Relax. Don’t be embarrassed if you happen to use a common expression, such as “See you later” or “Did you hear about this?” that seems to relate to a person’s disability.
More information is available from American Association of People with Disabilities at www.aapd-dc.org

Words by Geoff Abbott and Pictures by Steve Ford




Nik Royale climbing mountains close to his home near Llanberis


A rock climbing enthusiast is hoping to become one of the first disabled instructors in the UK.

Nik Royale is in the final stages of a training process which will allow him to instruct at indoor climbing centres.

The 36-year-old, who lives near Llanberis, Gwynedd, has a progressive form of cerebral palsy and needs to use a wheelchair at times.

If successful, he hopes to set up disabled rock climbing clubs "to break down the barriers".

Mr Royale said: "I need the wheelchair because I can't walk all the time and after I've been climbing my legs go all shaky because it puts a lot of pressure on them.


There is a lot of misconception about the sport that it's only suitable for the very fit and very strong... it's open to absolutely everybody and Nik is very passionate about the sport and wants to publicise that fact

Jude Hargreaves, Awesome Walls, on Nik Royale, pictured
"If I pass my assessment I would like to help set up disabled rock climbing clubs because it can help with balance, coordination, physical fitness, stamina and confidence.

"I would like to break down the barriers so people in wheelchairs can actually do it," he said.

He has recently started training at a centre in Liverpool as part of a requirement to climb at three different centres, and said the more challenging facilities had helped him develop.

"Awesome Walls is huge and they're constantly changing their routes," he explained.

"It's very wheelchair-accessible and the staff are friendly and they've made me feel very welcome.

Technical skills

"They've let me train there for free and that includes two friends who can climb with me.

"I've increased my technical skills and I'm climbing a grade higher now."

He is helping at the centre as an assistant instructor and has been a hit with the younger climbers.

The centre's assistant manager, Jude Hargreaves, said people could forget his disability because he was already a "very good climbing instructor".

"He knows his stuff which is essential and we're really pleased to have him on board," said Jude, who has worked at the centre for two years.

"The way it works at the climbing wall is that we like it to be open to absolutely everybody.

"There is a lot of misconception about the sport that it's only suitable for the very fit and very strong.

"That's not the case. It's open to absolutely everybody and Nik is very passionate about the sport and wants to publicise that fact."

BACKGROUND: Cerebral palsy is a condition that causes physical disability in early development. It is caused by damage to the white matter in the motor centers of the developing brain and abnormalities that disrupt the brain's abilities. Brain damage is caused by bleeding and a lack of oxygen to the brain. Perception, cognition, communication and musculoskeletal problems may also occur. Exposure to toxic substances, premature birth, low birth rate, infections during pregnancy and blood type incompatibility are some of the many risk factors for cerebral palsy. There is no cure for cerebral palsy, but treatments used early and regularly can reduce the affects of the disease. Many specialists are examining how brain cells form and make the right connections and are trying to prevent disruption of the normal development of the brain.

SYMPTOMS: Young children with cerebral palsy may not be able to crawl, walk, or sit without support or reach. Development of abnormal muscle tone or uncontrolled movements may occur. Speech problems, mental retardation, seizures, hearing loss and vision problems are also symptoms of cerebral palsy. Experts say if parents see their child develop these symptoms, they should contact their health care provider for testing.

TREATMENTS: Rehabilitation treatment involves physical activity and stretching to accomplish tasks such as walking and sitting unsupported. Occupational therapy helps address and accomplish needs in order to live the most independent life possible. Communication problems can be overcome by speech therapy. Medications such as dopaminergic drugs like Sinernet and Artane, and muscle relaxants can also be prescribed to reduce abnormal movements and help prevent seizures.

THERAPIES: Lokomat therapy uses a robotic device to help a person learn how to walk. The patient is put in a harness over a treadmill and robotic leg harnesses repeat a natural walking motion while strengthening leg muscles. Computers measure the response to the movements and also provide motivational cartoons to give the patients instruction. Before Lokomat, this therapy was done by people manually moving patients' legs. The more traditional method limited the effectiveness and duration of the therapy, but the Lokomat keeps a constant, more long-term pace. Results from a study indicated that there was an improvement in motor function and walking speed after using Lokomat therapy. Children over age 4 with neurological conditions that are evaluated by a physician are eligible for Lokomat therapy.

The principles behind neuro-cognitive therapy are two-fold. Firstly that children with developmental difficulties experience problems of sensory perception and need the provision of an appropriate ‘neurological environment' in order to correct these sensory mis-perceptions. Secondly, learning can lead development and no matter how badly affected a child is, if information is presented at the correct level and in the correct manner, any child can learn.

The regime is the brainchild of Andrew Brereton, who himself was the father of a child who suffered profound cerebral palsy and autism. Unfortunately Andrew’s son passed away from a stroke four years ago, but during his life and afterward Andrew has striven to study and become qualified in the areas of child development and cognitive psychology.

During his son’s life Andrew gained the his first degree in psychology and child development, later studying in the department of ‘Human communications sciences’ at the University of Sheffield, where he gained post graduate qualifications in ‘Language and Communication Impairments in Children.

’ Latterly Andrew gained his Msc in cognitive psychology and child development.His son’s problems initially motivated Andrew to study as he became tired of the life of his family being controlled by doctors and therapists, who often did not appear to have much of a clue about treating his son. His aim was to amass the knowledge required to free his family from this control, so that they could question the professionals who were treating his son as equals and regain their independence. However, it soon became apparent to Andrew that his studies would become far more meaningful to him than this simple ambition and he began to nurture ideas about helping other children.Andrew’s quest for knowledge led his family all over the world to various clinics who offered alternative treatments, often against the advice of his son’s medical professionals, some of whom treated the family badly, viewing the families decision to try alternatives as a threat to their competence. Despite the fact that some of the alternative treatments were helpful in helping his son make incredible developmental gains, for instance restoring his vision from being cortically blind, Andrew became disillusioned with many of the proponents of such alternatives after discovering their lack of qualifications in the field. It was at this point that he knew how he must use his own studies to help other children like his son.Andrew launched Snowdrop earlier this year and has been staggered at the response from families who have children like his son. Within just a few short weeks of the launch Snowdrop is treating children from as far afield as the US, South Africa and Indonesia, in addition to treating children in the UK.Andrew has also published two books, one on the subject of cerebral palsy and the other concerning autism, which can be obtained through the Snowdrop website.

Baby hospice seeks top spot
ZOE’S Place is determined to clinch the double by being top of the table again at the end of this year’s Wish campaign.

And with only five days to go to register it won’t be long until the tokens start mounting up.

Last year the baby hospice in Normanby collected a staggering 143,830 tokens to take home £1,403.62.

“It was the cutting and sticking I remember, we went through a lot of Pritt Sticks, it was all hands on deck,” said fundraiser Sue Fox, who is ready to do it all again and hopefully raise even more money.

Chief executive Mark Guidery said the 2008 Wish funding was used to buy a standing frame to assist youngsters who struggle to stand while they have physiotherapy.

“It’s a very expensive, specialised piece of equipment,” he said. “Without the money from Wish we would have had to sacrifice something else to buy it.”

Mrs Fox said: “We have 55 families that regularly access Zoe’s Place so we need every penny we can get.

“We know it’s difficult at the moment because of the current financial climate, a lot of people find it hard to find that extra pound to give to charity, so something like the Wish appeal is brilliant for us.”
Zoe’s Place is a home from home for babies who have life-limiting illnesses and complex needs.

It offers palliative and respite care for babies and infants from birth to five years old and can take up to six youngsters at any one time.

For the parents who need to take advantage of its services it provides a vital lifeline.

Jenny Landess, 24, of Linthorpe whose son Josh McMahon,has cerebral palsy, said she would be getting all her friends and family to collect tokens for the baby hospice which has done so much for her son.

“Zoe’s Place is absolutely excellent. They are lifesavers. It’s so good to get some respite. It costs £850,000 a year to run so every little helps.” Mike Farrell, 41, of Marton, whose daughter Megan has cerebral palsy, said: “Zoe’s Place is absolutely fantastic especially with Megan. She suffered another seizure a couple of weeks ago while she was at Zoe’s Place and the staff handled it perfectly.

“When you go into a place like this you realise how dedicated and professional the staff are - it’s a place that really deserves as much as we can give them. I would urge people to get behind Zoe’s Place, the more money it gets the better.”

This year the Wish campaign has £30,000 to give away - the more tokens the baby hospice collects the more money it will walk away with.

To support Zoe’s Place send your Wish tokens to: Zoe’s Place Baby Hospice, Crossbeck House, High Street, Normanby, Middlesbrough, TS6 9DA

ICT applications should consider handicapped users from the start,
Writer: Sasiwimon Boonruang

Nong Oay and Nong Note enjoy taking photos for visitors and editing them with the Photoshop program.

The Mattayom 1 student cannot articulate, but she is able to communicate with teachers and friends with a picture notebook and the Talking Switch speech assistive equipment, which helps her to partake in activities in the classroom.

Beside Nong Kob, at the United Nation building recently, was fellow wheelchair user Nong Oay, who has weak bones due to the inherited disorder of collagen synthesis, and Nong Note, who suffers muscle weakness.

All are students at Srisangwal School who today enjoy using not only the assistive technology, developed by the National Electronics and Computer Technology Centre (Nectec), but also computer programs such as Photoshop.

Visitors and delegates at the "ITU Asia-Pacific Regional Forum on mainstreaming ICT Accessibility for Persons with Disabilities" recently witnessed the students' capabilities in decorating and editing snaps.

"I didn't think I would look so good in the photo, thank you!" said one visitor, chuckling over a picture and inserting a 100-baht banknote into the donation box.

One woman who had Nong Kob take her photo and decorate it with a yellow butterfly was surprised when she received the photo and said even able-bodied adults could not produce such a high quality of work.

"How old are you?" she asked Nong Kob, who answered "11" on the computer screen.

These are technologies that help bridge the gap between people with disabilities (PWDs) and those without.

However, exposure to ICT for PWDs has been limited in some aspects.

Sawang Srisom, officer of Disabled Peoples' International Asia Pacific, noted that technology has progressively developed but there is still a conflict between demand and supply.

It will help, at least in the short term, if the government puts measures in place to enable PWDs to buy equipment at a lower price. In the long term, the state should have a policy for PWD employment.

In the workplace, he said, employers should install technology such as speech synthesis software for the visually impaired, or special mice designed for physically disabled people.

Sawang further encourages the introduction of closed caption or sign language options on television, adding that this would be useful not only to deaf people but also anyone trying to watch TV in a noisy environment.

Furthermore, Shadi Abou-Zahra, W3C web accessibility specialist, said graphical images on the internet are not suitable for sight-impaired people. They might be able to use screen readers for the text but the graphical information can not be output automatically. Video online will become more widely available, but captioning is rare.

If the website cannot be navigated by keyboard, PWDs may use a special mouse to do so. But the majority of websites have not been designed with the principles of accessibility and are therefore difficult for PWDs to use.

In order for the web to become truly accessible to all, it had to be coded properly, said Shadi.

The specialist noted that W3C has developed a technical standard for the web to adopt internationally recognised guidelines.

"The biggest challenge is not technology, but awareness-raising," he said, adding that people who develop websites typically don't consider the requirements of PWDs.

Training the developers, policy makers and decision makers is very important because they have to work together.

The issue of ICT accessibility for PWDs has significantly raised awareness.

Thailand recently hosted the first forum to be staged in the Pacific region.

In the knowledge-driven information age and society, it is timely to design and implement an inclusive ICT policy to provide digital opportunities to PWDs, according to Dr Eun-Ju Kim, head of the ITU Regional Office for Asia and the Pacific.

Citing the World Health Organisation, Kim said 10 percent of the world's population - or about 650 million people - have some form of disability, with the number increasing every year due to various factors such as war, natural disasters, unhealthy living conditions, and the absence of knowledge about disabilities and how to manage them.

In Thailand, there are around 1.9 million PWDs, or 2.9% of the population, many of whom encounter barriers when using ICT products and services.


Dr Eun-Ju Kim says the industry should have more R&D to come up with the right design products and services for disabled people.
ICT accessibility has been practiced to a very limited extent. Existing ICT products and services were not designed with principles of accessibility in mind and are therefore difficult for PWDs to use. The most obvious example is web accessibility.

"It costs dramatically less to implement web accessibility at the design stage than to retrofit it later," said Kim.

"Thus, it is worth emphasising the important roles of not only policy-makers and regulators but also industries, which can contribute not only to appropriate designs but also to affordable ICT products and services for PWD, taking into account the potential markets in the aged society."

The ITU Regional head urged that it is time to present PWDs with digital opportunities through ICT inclusive policy and regulations such as code of conducts in the information society so that assistive technologies, devices and applications specifically designed for PwD can be accessible and affordable to use.

She pointed out the ITU program of "Building the Capacity of Harnessing ICT for Disempowered/Marginalised Communities in Sri Lanka" from which representatives came to Thailand to exchange experiences.

They feel Thailand enjoys far more advanced technology in ICT applications and for PWDs and when they go back to Sri Lanka they can raise awareness of the issue to encourage more and better technology and applications available for their disabled people.

"I want to continue this kind of exchange program in the future as part of this project," said Kim.

"Next year, the program may be carried out with Mongolia and another countries."

Her Royal Highness Princess Maha Chakri Sirindhorn, who Kim said is a leader in the field, and who is also the one of ITU patrons, is supporting ICT in a wide range.

However, she said this is not the end, but just a beginning which still requires a lot of work to ensure equal access for all to ICT.

Kim is encouraging the industry to focus more on research and development to come up with right design products and services for PWDs to help them enjoy as full a life as possible.

Significantly, she said, many developed countries such as Japan and around Europe are seeing a rapid increase in population age, so their ICT industries are adapting to support the socio-economic needs of a growing and ageing demographic, including the different forms of disabilities that accompany the trend, such as the loss or reduction of dexterity and senses.

A decade from now, it is envisioned that these countries will have adapted so that their entire populations should be able to benefit from ICT, regardless of disabilities.

"I want to use this momentum to raise awareness for the industry, operators, and regulators," said Kim, adding that ITU will deliver appropriate training to various stakeholders, including policy makers, regulators and others interested in mainstreaming, developing and implementing ICT accessibility issues for PWDs at national, sub-regional and regional levels, and will continue implementing projects through close collaboration with various partners such as the ICT Ministry, Nectec and the National Telecommunications Commission, and others.

According to Axel Leblois, executive director, Global Initiative for Inclusive ICTs (G3ict), ICT has become a significant factor for economic and social development in all countries around the world. People's ability to use mainstream ICT applications and devices directly affects their ability to fully participate in education, employment, culture and leisure, civic or social activities.

Television, mobile phones, radios, computers, websites and multiple automated digital interfaces are used every day by billions of persons to communicate, access information in their jobs, at school, at home or to interact with government services or e-commerce.

The pervasive usage of ICTs in all aspects of society around the world thus creates a significant risk of exclusion if ICT is not accessible to PWDs.

For Thailand, the government which has ratified the UN CRPD (Convention on the Rights of People with Disabilities) is working on implementation by establishing learning centres nationwide that include assistive technologies such as braille printers and digital talking books for use by the visually impaired. There are also plans to use closed captioning for television programming to promote use by hearing-impaired users.

Friday morning came and the nurses came to sort my bed out so I asked them if I was allowed to go in the shower, I had had a good night and was feeling great, the nurse said yes it's fine we will get some waterproof dressings and then you can go in. The nurse helped me but it was lovely just being back to me doing things and I thought to myself I wonder if I would be allowed home, although didn't say anything. After the shower I got my clothes on rather than my pjamas and sat in my wheelchair to have breakfast. Mum then called me to see how I was doing and said I had just been in the shower and managed fine.

Once everything in my room had beensorted I got out of my chair and went for a walk into the ward and to speak to the Sister on duty to see what the likelyhood was that I would be allowed home, she didn't see why not but it would be up to the man himself, and that he would be coming to see me at some point in the day. I knew with it being friday, he would have clinic and therefore could be around lunchtime.

I decided to go back to my room and get in my chair so that I could get around easier and go to the shops. The Dr who had been looking after me came to see me briefly to make sure everything was fine and it was. I then spend the rest of the time whizzing around in my chair.

It is sod's law that when you are waiting too see someone they never come, but the minute you go out they arrive. This is exactly what happened I had gone off the ward for a few minutes and Mr Papastefanou had been too see me and I missed him, or so I thought because as I was heading back he was coming towards me so we stopped and had a long discussion about how I was and how things would be over next few months etc. He asked if I had any questions so I asked would I be allowed to go home now ? if your not happy then I would stay over the weekend etc, but no he was as happy as I was, the x-ray looked good, and I had done everything he had asked me to do, so off you go with my blessing.

It was really an emotional moment for both of us, because he was leaving the country and going home to greece to work, but we both left on a very happy moment, and Mr Papastefanou, if you are reading this I would like to thank you for everything you have done for me, and I will keep my fighting spirit I promise!!!!!!!!

Safe Journey

UD helps a 3-year-old with cerebral palsy get around -- while giving other kids hope

By RACHEL KIPP
The News Journal



It was late afternoon, close to dinnertime, and Julianne Harp was ready to leave the playground for home. But when Harp walked toward the exit, her 3-year-old son, Will, headed in the opposite direction, toward the sandbox.

"It's so nice to see him able to do typical age-appropriate behavior -- that outweighs your frustration at him for not listening," Harp said.

Harp clearly welcomes Will's little acts of defiance. Since he was born, there haven't been many times she has had to run after her preschooler.

Will has cerebral palsy and the neurological disorder has left him without much control of his arms and legs. Most of the time, he relies on adults to carry him or to push his stroller. Oftentimes, he sits on the sidelines while classmates at the University of Delaware's Early Learning Center race each other on tricycles.

But this summer is different. For the first time in his young life, Will is joining the chase.

With a turn of a joystick, Will zips around in a power chair custom-made by researchers at the University of Delaware. Using the chair, the brown-haired preschooler can travel in a pack of his classmates from the sandbox to the swingset and back. He no longer has to yell for friends to come to him, or bring up the rear because he had to wait for an adult's help. The research team taught him to drive, and they've been a constant presence over the past several months, watching how Will reacts to his newfound independence.

Will is at the center of a study of power mobility in young children. Researchers wondered if babies could use power chairs to move around obstacles. Now they are looking not just at mobility but at how the freedom of movement affects a child's ability to make friends and interact with the world.

"He's never been reprimanded, he's never acted out. He's the perfect student in class -- and it's horrible," said Cole Galloway, an associate professor at UD and one of the lead researchers. "There's a window right now at his age and if we don't get him mobile and social ... he's the perfect elementary school kid. He's the hidden kid."

Other researchers have conducted studies that involve children using robotic devices, but this work is unique because of the young age of the children and because it looks at the role mobility plays in developing a child's social skills and personality. Researchers hope their work could lead to young children whose immobility now hinders their social development to learning socialization skills to enable them to make friends so they are not behind their peers when they enter school.

The team at UD believes that starting young is essential because by the time a child enters kindergarten, there are fewer opportunities for unstructured play. Children don't usually start using power chairs until early elementary school; as toddlers and preschoolers, they often rely on adults to carry them from place to place. UD researchers are worried that, by age 6 or 7, children without mobility have already fallen behind in terms of learning to take risks and initiate the spontaneous interaction that is often so key to making friends.

"Will has developed tremendous focus and attention. What this helps him to do is engage in more cooperative play and to navigate his world," said Laura Morris, associate director of the Early Learning Center. "There are very few 3- and 4-year-olds who don't challenge the world in some way. That's how a child learns to take risks, how they learn to push limits and how they learn to get what they want through lots of different strategies. Will hasn't had the same kind of early opportunities to do that."

Taking it to the next level

When Galloway's team began studying power mobility in children, their work was confined to the lab and the Early Learning Center gym. There, researchers observed babies from 4 months to 15 months old as they drove power chairs with robotic brains and sensors to help them avoid walls and bumps.

To take the study to the next level, however, they had to introduce the obstacles of daily life.

"It's immensely different to be using this technology in a real community," Galloway said. "Now it's not just about the technology, it's about Will."

Will's family got involved in the research on the advice of Tracy Stoner, his physical therapist. Crawling, walking and getting in and out of different positions have always been a challenge for him, and Stoner thought he might be motivated if given the power to easily move on his own.

"He puts out so much energy when he's trying to walk; he's working so hard that he's just dripping with sweat trying to get where he's going," Stoner said. "I know he's working his little heart out. And one of the other reasons I saw Will as being a candidate for power mobility is if I have to work so hard to get 50 feet to a toy I want, if I'm so exhausted by the time I get there, I don't want to play anymore. It's sort of negative reinforcement: I won't move because it takes so much energy, and I hate walking because it's taking so much energy."

Will started working with the UD researchers when he was 2 1/2. First, he learned to drive what the team calls his rocket chair. Although the chair is one of the smallest power chairs available, it was too bulky for the classroom. Will could use it only in the Early Learning Center gym or outside on the playground.

In July, however, Will started using UD2, a power chair about the same height as his classmates' tricycles. A green and blue booster seat with a tray is attached to the robot, which has indoor/outdoor wheels and a wireless joystick. It has a robotic brain and sensors that researchers covered with a red foam swimming noodle because Will is adept enough to avoid obstacles on his own.

"It took him three months to learn to drive when he started," said Christina Ragonesi, a UD graduate student working on her doctorate in biomechanics and movement science who taught Will to drive the power chair. "The coolest part of the training was when he learned to drive away. I'd say it was time to leave the gym and he would drive away from me. It showed Will was learning to make his own decisions."

Learning to drive

Before Will began using UD2, researchers filmed him during class to see what his life was like without the power chair. It was business as usual at the Early Learning Center, a day care facility that does double duty as a living laboratory.

"He would just sit, he had to rely on teachers to move him from Point A to Point B," Ragonesi said. "He couldn't really make his own decisions unless he called a teacher over."

The power chair is only one of the devices that Will uses to get around. The researchers, his physical therapist and his parents agree that he needs to spend time each day using technology like a gait trainer that gives him the support he needs to walk.

"He needs both. He can't just have all the power and he needs to learn standing and he needs to use the gait trainer," Stoner said. "He needs to have options for both so he has time to learn and time to explore and time to walk and transition within tight spaces. Right now, no matter how small the robot is, there are places where it can't go so he needs to learn to walk."

When the researchers started training Will, they thought he would "just take off," after learning to drive the chair, Galloway said. That didn't happen. Soon after he started using the device, a group of classmates started a game of hide-and-seek. Will was "it," but after counting to 10 while the other children found hiding places, he didn't move.

"Just because Will understood how to drive in the halls didn't mean he knew how to use his mobility to play a game like hide-and-seek. He could tell you the rules of hide-and-seek but he couldn't use his mobility to interact and know that if I'm going to come seek you, I have to use the power chair to do that," Galloway said. "Even though he knew how to drive, even with the robot in class, it's taking some intervention for him to learn how to go and follow a group to a next activity."

Gradually, Will is getting used to the new circumstances. Recently, he donned a policeman's costume and drove around the classroom pretending his chair was a cruiser. He figured out the chair had enough bulk to push the classroom bookshelves along the floor. The little boy's classmates helped out by moving chairs or toys out of the way of the power chair.

While using UD2 on the playground last week, he was initially more interested in handing Ragonesi shovelfuls of sand from his pail and drawing on his tray table with sidewalk chalk than moving around.

"What color is this?" Ragonesi asked as she helped him draw a star on the tray with lilac-colored chalk.

"Purple," Will replied.

Then Will decided he wanted to drive under the playset. He careened toward the slide. His friends, twins Alexis and Arianna Mayle, ran over. Will shared the sand pail with the girls and the three wandered away together chattering, as Ragonesi shouted after Will to stay off the grass.

"I like to see this," Ragonesi said. "He never used to initiate anything."

The team studied Will's use of the power chair for 19 days. They filmed him for two hours a day and documented how many minutes he spent at each activity and how many minutes he spent interacting with other children and adults. A computer inside the chair provided raw data about Will's movements. Last week, the team was preparing to take the power chair away for three days to see how Will reacted to losing the mobility.

"If he cries and asks for it, we're going to give it to him the minute he cries," Ragonesi said. "After this week, we'll give him the robot from now on. We'll step out of the picture."

Selling the chair

Typically, children with physical disabilities don't start using manual wheelchairs or power chairs until they're about 2 years old, said Dr. Timothy J. Brei, a developmental pediatrician at the Riley Hospital for Children in Indianapolis and medical director for the Spina Bifida Association, an advocacy group. Brei said most children start out using manual chairs.

"Power mobility is very expensive and you want to make sure you give it to someone who can really effectively use it," Brei said.

Although many in the medical community believe that mobility has some bearing on other aspects of a child's development, Brei isn't aware of any studies that document the connection.

"A child at preschool age is learning about who they are separate from their parents and they're learning social skills, interacting with their peers, playing or turn taking," Brei said. "But are they also learning something about who they are and their own sense of self-competence or self-worth or self-esteem? I think that may be as valuable as any just flat-out ability to navigate their environment or cognitive learning or social skills learning."

For the UD researchers to move forward with their work, they need to get power chairs into the lives of other children with physical disabilities.

Galloway gets a call about every two weeks from families who read about his work and want to get their children involved. But the team needs additional funding to expand. Ideally, they hope to form partnerships within the business world and commercialize the power chairs.

UD2 was developed by Sunil Agrawal, a mechanical engineering professor. His group ordered the pieces of the chair, assembled it and then wrote a software program so the device could be used for power mobility. The challenge they face is developing commercially available chairs that have the same technology as Will's but can be sold at a relatively low cost. Each robot costs between $15,000 and $20,000; the researchers want to develop a chair that could be purchased for $1,000 to $2,000.

The team submitted a grant proposal to the National Institutes of Health that would fund the production of 16 power chairs -- half would be similar to Will's and the other half would be tweaked so the researchers could study add-ons. If several dozen families living in Delaware or across the country started using the chairs, Galloway said, their experiences using the devices in different environments would help the researchers continue to perfect the technology and explore mobility's connection to social development.

"We want you to see UD3 in local grocery stores, in churches and synagogues, in ballparks," Galloway said. "That's in line with our research. That's what pushes us to the next level. This kind of project, it's not just research, it's advocacy, it's policy."

The research is also focused on early education, Galloway said. By the time Will is in elementary school, he said, sitting quiet and still becomes an asset rather than something adults discourage. If the little boy doesn't venture out of his comfort zone now, he may never learn to.

Expressing himself

The adults in Will's life say he's an easygoing, "go-with-the-flow" type. But that's not necessarily good.

"He's got to be the bad boy," Galloway explained. "Luckily, he has administrators and classroom teachers who understand that they need to work for the whole range of behaviors, that a tantrum is part of normal development."

"The other piece is trying to be very careful not to turn Will into something he's not," Morris said. "This is about giving him opportunities to explore his world and being able to step back and see how he does that."

Will uses the power chairs only at school. When he wants something at his home in Newark, the little boy uses a tactic he calls "being a caterpillar:" He army crawls to get what he wants. Galloway helped his parents secure a power chair for a recent family trip to Disney World, and it was often Will who announced, "I know how to do it!" and figured out how to maneuver the device through doorways or tight spaces.

"I don't know if it's the chair or it's his age, but he's starting to express himself more," Harp said. "He'll say, 'I want that,' or 'You stole my toy.' He's much more vocal about what he wants and what he doesn't. On the downside, because he can move from one place to another, his attention span, for one thing, has become less."

While on the playground with Ragonesi last week, Will urged, "Let's go!" when she paused to talk to another adult. Without being prompted, he turned back to retrieve a forgotten sand pail. Paul Urbaniak, another of Will's classmates, grabbed the chair's joystick and Will inched a few feet forward. The little boy didn't appear to mind, but Will's teachers reminded both boys that Paul needs to ask permission before operating Will's chair.

Lately, the researchers and Will's teachers are starting to talk about how to react if Will begins using the chair to break the rules.

"We call him the 13th kid. There are 13 kids in his class, but if he's not mobile, there are 12," Galloway said. "You give him mobility and the teachers say, 'Oh no, you just gave us a new kid.' "

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Active Isolated Stretching has had impact across nation
Stretching has long been considered an important part of maintaining a limber and healthy body. However, most men and women, whether they are pro athletes or an average exerciser, neglect stretching. In addition, how one should stretch is a constantly changing issue.

Working thousands of hours to develop a foolproof stretching method, Aaron Mattes, a registered kinesiotherapist and a licensed massage therapist, created Active Isolated Stretching, or AIS.

"I heard about Aaron through a friend of mine who had tennis elbow," said Sun Valley resident Kiril Sokoloff. "I was told Koby Bryant goes to Aaron after every game for four hours."

Sokoloff said Mattes is an extraordinary physical therapist and has a passion for healing. Mattes' method is used by professional and top athletes, and has been adopted by physical therapists and trainers at Zenergy at Thunder Spring.

"It is active isolated stretching, which is very focused on breathing," said AIS-certified therapist Winston Purkiss. "It is a short stretch hold of no more than two seconds. This is the most effective stretching method ever introduced to me."

Purkiss said Mattes is based in Florida and his AIS method came to Sun Valley because of Sokoloff.

"The method has received a research grant by the National Institutes of Health," said Purkiss. "My wife had a stroke and was unable to use her right arm. Sokoloff flew her to Florida to meet Aaron and she was able to drink from a glass. It is not a miracle cure, but it is a method that continues to be effective."

The AIS method is about movement. Mattes created stretches for people to do alone and with a therapist. The AIS method is in a book for $35 available at Mattes' Web site, stretchingusa.com. In addition, Mattes has a variety of inexpensive materials and stretching apparatus available on the Web site.

"You feel more energy through this method of stretching because of the oxygen going through the body to the tissues,; Purkiss said.; AIS helps Parkinson's disease patients, people who are wheelchair bound, stroke patients, people with bunion problems, people with cerebral palsy and those who have had replacement surgery for hips and knees."

Sokoloff is working on bringing Mattes to Sun Valley next June to expose more people to AIS and to do a full training seminar presented by Zenergy.

Lots of people in the valley do a lot of running, biking and a great deal of exercise and need to stretch properly," Sokoloff said. "My wife is pregnant, and she has been doing AIS and has not had any pain. We plan to have work done on our baby too. I believe in AIS. Young children can advance mentally and physically with stretching."

Valley resident Pat Schott, 45, is a full-time painter and avid cyclist. He said he was suffering from back pain and hamstring issues and was almost crippled when he ran into AIS therapist Diane Calvero. Calvero gave Schott AIS sessions at Zenergy, which sold him on the benefits of stretching.

Schott enjoys cyclocross racing and mountain biking; during cyclocross season he is racing every weekend. He said he is up and down ladders all day and the combination of his job and cycling does not do well for the body.

"It's the same breathing as yoga but different," Schott said. "AIS is quick and the results are immediate. I highly recommend AIS."


Appointments for AIS sessions can by made at Zenergy. They cost $85 for members and $100 for non-members. To make an appointment, call Personal Services Manager Mollie Holt at 725-0595, ext. 124.

BANGALORE: Prateek (12) had developed a progressive sideward bending of the spine, and found it difficult to sit or walk.


A cerebral palsy patient, Prateek was diagnosed with neuromuscular scoliosis (sideward bending of the spine) of 100 degrees. He needed a galveston (spino-pelvic) fusion surgery, but as it is a rare surgery, involving high risk and expertise, the boy had to wait for two years for the right facility and surgeon. Finally, Manipal Hospital came to his rescue.

The surgery done by a team headed by Dr S Vidyadhara, consultant spine surgeon, lasted for eight hours. He was given six units of blood.

Now, two days after the operation, Prateek can sit straight. His post-operative radiograph shows all implants are in good position.

According to Dr Vidyadhara, cerebral palsy is quite common and affects one in a thousand children born of normal deliveries. It is the result of hypoxic damage to the brain during labour that causes muscular paralysis and results in neuro-muscular scoliosis.

Prateek's case was challenging because of the severity of the curve -- it was 100 degrees and rigid. Also, a side of the pelvis got lifted up on one side and due to which he lost balance while sitting. All this had to be corrected. He also faced risk of paraplegia (impairment in motor or sensory function of the lower extremities). The other challenges were increased surgical time and risk of blood loss, the doctor said.

Prateek can now move both his legs, and will be able to use a walker in two-three days once the operative pain is reasonably reduced.

Footsteps therapy uses trampolines to help get confidence back
Tuesday August 25,2009
Minty Hoyer Millar, 17, who has cerebral palsy, has become mobile with the aid of a strange device called the spider. Her mother Pip, 49, tells her story


Minty was my fourth child so I was aware she was not progressing as she should. I saw she was struggling to achieve the usual baby and toddler milestones. At 12 months she was assessed and we were told she was physically and mentally handicapped and would never achieve beyond the capabilities of a four–year-old. I was devastated.

Doctors weren’t sure what was wrong. Cerebral palsy, a neurological disorder affecting balance and movement was confirmed when Minty was 22 months old. I learned it leaves sufferers with little or no mobility. We were told we’d have to wait more than a year to see an NHS physiotherapist. I researched the condition to see what other help was available but it became clear we would have to do all the work to make sure she had the best life possible.


‘It gives kids a confidence boost'



As Minty got older she was very floppy. By the time she was nine she could only crawl. She couldn’t stand, had no balance and very little speech.

I felt sad when I looked at her. I wanted her to be part of everything but she couldn’t. It was frustrating and upsetting because I knew from day one that she could achieve much more. With three other children, William now 22, Thomas, 20, and Henry, 19, we just had get on with it.

I spent my spare time finding out more about treatments around the world. I heard about a therapy called Footsteps in the city of Koszalin, north-west Poland. It uses exercises that focus on improving movements such as rolling over, supporting, reaching, grasping and holding.

It also teaches patients to shift their body weight and move from one place to another, enabling greater mobility and independence and encouraging increased self-confidence. All sorts of apparatus including balls, rolls, trampolines and ladders are used. We begain travelling to Poland every other month and after a year Minty was more mobile and happier.

There we discovered a device called the spider. It is a frame with bungee ropes attached which holds the child in place while physiotherapists work on improving their muscle strength and posture. It looks like a giant spider’s web.

By supporting Minty in an upright position it allowed her to move independently. Therapists could put her body through various exercises in different positions so it could be aligned properly. This helped develop her balance. It was great fun and she enjoyed it a lot.

With it she learned to stand independently and walk a little bit. Stimulating so many different muscle groups even helped her speech.

I couldn’t help thinking it was a huge shame that so many others in the UK were missing out on the opportunity Minty had. Then in 2004, when Minty was 12, my husband Christian suggested we set up our own Footsteps centre in an outbuilding at our home in South Warborough, Oxfordshire, so that others could use the spider. I was excited about the idea. Eventually we persuaded two amazing physiotherapists Filip and Gosia to come over from Poland to work with us.

When children use the spider it can be the first time they have stood upright. It gives them a huge confidence boost and the therapists can try lots of exercises with them.

They have a new sense of freedom. The spider helps with stability and balance and the children love playing games like catching balls while using it.

Last year we set up the Footsteps Foundation charity to help families who can’t afford the treatment, which costs about £1,800 for a three-week course.


W e’ve raised more than £110,000 to date and have been thrilled to send out grants to families who would otherwise have not been able to come to us. Minty is now walking independently and is very social. Her speech is fantastic. She’s a delight and very much a teenager. She still spends four afternoons a week on the spider. It might have been hard in the beginning but once she realised how much progress she was making her motivation and determination kept her going and she’s achieved so much.


l For more information call the Footsteps centre on 01865 858 382/065 or visit footsteps.ltd.uk

l For the Footsteps Foundation charity www.footstepsfoundation.com


Interview by PENNY STRETTONDR ALISON STEWART is an Edinburgh-based GP with an interest in cerebral palsy. She says: Cerebral palsy is the name given to a group of conditions that cause movement problems. The most common type leads to stiff or rigid muscles in the limbs and can range from mild to severe. It results from damage to the brain usually before birth or from an incorrectly developed brain.

It affects about one in 400 people. Physiotherapy is the prime technique for treating cerebral palsy. It prevents muscle weakness and enhances walking and standing. Anything that improves movement and motor skills and helps to enhance a person’s life is beneficial.

A TEENAGE cerebral palsy sufferer has received a standing ovation after unveiling a self-produced video documenting his own life-threatening spinal surgery.

Tom Williams pitched Rebuilding Thomas to medical experts at the Custard Factory, in Birmingham, on Friday.

The 18-year-old sold 80 copies to a metal spine manufacturer and hopes to hear back from NHS trusts and charities in the coming weeks.

Tom (pictured) said he would now take a well-earned rest after a “whirlwind” week, during which he also discovered he had passed his A-levels.

The Newborough resident said: “It’s been a crazy week but I’m absolutely delighted to have got into Bradford University, where I’ll study to be a film producer, and to have got a standing ovation on Friday.

“I managed to change the views of those who thought the documentary would be too depressing and hope it goes on to be a success.

“I’m now going to take a year out to go to independence college, then on to uni, but I’ll always reflect on this and feel proud of what I’ve achieved.” Tom underwent a 12-hour operation to straighten his spine last year, filming his experiences before, during and after surgery.

He funded the film’s production with his disability benefits and now hopes NHS trusts around the UK will buy it to help parents, patients and doctors cope with similar operations.

During his year out, Tom will take up a new role as national advisor for the Scoliosis Society.

MARTINSBURG - Two years ago, the Kee family had never heard of a little town in Mexico called Nuevo Progresso, so obviously they didn't know what a great role it would play in their lives.

Brodie Kee, 20 months old, made his trip to Nuevo Progresso when he was only 14 months old. This wasn't a vacation to see the sights of Mexico, but a visit to a clinic called the International Stem Cell Institute.

"I had the perfect pregnancy. Nothing was wrong," said 20-year-old Kayla Kee, Brodie's mother. But two weeks before her due date, she became very ill and started having severe contractions. She noticed Brodie hadn't been moving as much as usual. The pain was so severe she decided to go to the emergency room, and after a through examination, her doctors at Ruby Memorial Hospital in Morgantown decided she needed an emergency Caesarean section because the baby's heart rate was extremely slow.

When he was born, Brodie wasn't breathing. Brodie's father, 22-year-old Adam Kee, said it took eight minutes to revive him. The doctor's recommended Brodie be immediately flown to Georgetown University Hospital in Washington, D.C., for a treatment called "total body cooling."

According to the Eunice Kennedy Shriver National Institute of Child Health and Human Development, body cooling is a procedure used to protect against brain injury in full-term infants born with birth asphyxia. The hope of body cooling is that it will increase the infant's chances for survival and possibly decrease the severity of neurological disability.

"The nurse at Georgetown told us Brodie had about a 10 percent chance of survival," said Rick Kee, Brodie's grandfather. They honestly didn't think he was going to make it.

For three days, Brodie was intubated and kept on a cooling blanket.

"He didn't move. He didn't cry. He didn't do anything," said Diane Kee, Brodie's grandmother.

After two weeks at Georgetown, Brodie was flown back to Ruby Memorial Hospital so he could be closer to home, where his parents are students at West Virginia University.

When Brodie returned to Ruby Memorial Hospital, Adam Kee said the medical staff painted a very grim picture for them.

"They gave him a 40 percent chance of living," he said. They were told that even if Brodie did survive, he may be blind and/or deaf, or never walk, talk or eat on his own."

To this day the Kees have no idea what happened to their baby - what made him so sick. They do know that whatever caused his asphyxia at birth now has caused him to have cerebral palsy.

The National Institute of Neurological Disorders and Stroke defines cerebral palsy as being "any one of a number of neurological disorders that appear in infancy or early childhood and permanently affect body movement and muscle coordination but don't worsen over time. ... It is caused by abnormalities in parts of the brain that control muscle movements. The most common (signs) are a lack of muscle coordination when performing voluntary movements; ... stiff or tight muscles and exaggerated reflexes (spasticity); walking with one foot or leg dragging; walking on the toes, a crouched gait, or a 'scissored' gait and muscle tone that is either too stiff or too floppy."

Brodie has the spasticity form of cerebral palsy, and before his trip to Mexico, he was very stiff and rigid.

What happened in Mexico? A miracle some might say.

Diane and Rick Kee are both nurses in the Martinsburg area, and during a seminar they attended in Morgantown for continuing education, they were introduced to stem cell research and what is being done to help diabetic patients.

Wondering what stem cell treatment might do for Brodie, the Kees started researching stem cell therapy and cerebral palsy.

"When we got home, we started searching on the Internet," Diane Kee said. "We saw they were doing stem cell treatment at Duke University and in Georgia, but you had to have the baby's cord blood and we didn't."

Kayla and Adam Kee said they had heard about saving their baby's cord blood after birth, but like most young parents, they didn't have the $2,000 needed to pay for it and actually never thought they would need it.

One day, feeling like they had exhausted all of their options, Diane Kee said she came across the Web site for the International Stem Cell Institute located in Nuevo Progresso, Mexico.

"A whole new world opened up to us," she said.

She read what the Web site had to say, then after speaking with the parent of a child in Florida who had the procedure, the Kees felt it was worth a try for Brodie.

"I was very skeptical," said Kayla Kee. "I thought, 'Oh my gosh - am I really about to do this?'"

Being very apprehensive, the Kees took a leap of faith and left for Nuevo Progresso with $10,000 to pay for Brodie's placental stem cell therapy treatment.

Nuevo Progress is located just across the southern tip of Texas in Mexico. The Kees actually stayed at a hotel in McAllen, Texas.

The Kees admit it was a little scary. There they were, going into a foreign country that has a violent reputation, while carrying a cashier's check.

They found that the International Stem Cell Institute is a very small operation made up of one doctor, a nurse and an office manager. Again, not very reassuring.

But once they met Rita Alexander, the office manager, and Dr. Gonzalez, they knew Brodie was in good hands.

"He was very sweet. Before the procedure, he made sure we didn't have any other questions," said Kayla. "You could see in his eyes that he really cared."

Although some of the equipment looked a little dated, the Kees said the office was very clean and the staff was very friendly.

Adam said Alexander told them that the worst that could happen was that nothing would happen, but the best that could happen was that they would see some sort of improvement in Brodie - and they have.

The entire procedure took only about a half-hour to complete. Brodie had four 1/4-inch incisions made - one in each arm and leg and one in his stomach. In the incision, Gonzalez placed placental and umbilical cord tissue containing stem cells. He then closed the incisions and the procedure was over. He used a local anesthetic for each incision and Brodie was awake the entire time, smiling and happy, his parents said.

Before the treatment, Brodie was not able to lie on his stomach. Adam Kee said his muscles would become very tense and he would arch his back, bowed up like a banana.

"I could tell he was in pain," said Kayla Kee. But ever since the treatment, Brodie has not had one episode of back arching and can even lie on his stomach now.

The Kees said they started noticing improvements in about two weeks.

"It was almost overnight," Adam Kee said.

Brodie had the procedure done last St. Patrick's Day, and his parents said he is a completely different child now.

Before Brodie had the stem cells placed into his stomach, he used to projectile vomit and couldn't keep any food down.

But now, his mother said he's eating well and has put on weight.

The Kees said they want to emphasize that the stem cells used for Brodie's treatment came from placental and umbilical cord tissue, not embryonic stem cells.

Diane Kee said the tissue used in the procedure goes through extensive testing, and because it does not have a blood type, stem cell treatment is not like an organ transplant - it is universal.

The Kees said that stem cell treatment is something that can be multiple times, depending on the illness being treated. For example, if someone has a degenerative disease, like rheumatoid arthritis, the patient must go back for follow-up treatments in order to maintain a certain level of health. If the disease is non-degenerative, like cerebral palsy, the patient can keep going back for treatment and hopefully continue getting positive results until the patient has reached full potential.

The Kees plan on returning to either Mexico or possibly Germany to continue Brodie's treatment.

Unfortunately the stem cell treatment and the trips involved are very expensive, and for two college students, it's more than just a financial stretch. That is why the Kees are planning several fundraising events in the future.

On Oct. 23, the Civitan Club is hosting a basket bingo at the Moose Lodge in Martinsburg. Diane Kee said she has a lot of Longaberger baskets she is donating to the cause.

Adam Kee said he went to high school with Nate Sowers, quarterback for the West Virginia Mountaineers, and he has given him three footballs to be signed by Noel Devine and other players on the team, that he will then raffle off.

The Kees hope the community fundraising efforts will help them pay for Brodie's treatment and travel costs.

When it comes to stem cell research, "new things are happening every day," said Diane Kee.

Even though patients might have to go out of the country at this point to seek treatment, the Kees want the community to know there are options out there for people struggling with a variety of diseases.

"I don't want people to hesitate because they're scared," said Kayla Kee.

As Diane Kee said, "We took a leap of faith," and it has certainly paid off.

PITTSBURGH, Aug. 10 /PRNewswire/ -- DynaVox Mayer-Johnson, the world's leading provider of communication and education solutions for individuals with speech, language and learning disabilities, today announced the DynaVox Xpress. The Xpress sets a new standard for hand-held speech solutions by bringing together comprehensive augmentative and alternative communication (AAC) tools with a variety of mainstream communication features.
An innovative, sleek and extremely portable device, the Xpress delivers powerful communication capabilities for individuals living with stroke, autism, Down syndrome, traumatic brain injury, aphasia, ALS, and apraxia of speech.
This integration allows for robust communication in virtually any situation, and:
Enables mobility and creates confidence. The Xpress is so small it can be held in one hand or two, and can easily be carried in a pocket or purse. With its discreet design, the Xpress allows augmented communicators to blend in with the crowd and still speak their minds. Touch screen technology never before available in a speech device creates a compelling visual experience, and allows touching or "sweeping" to access more content quickly with fingers or thumbs.
Takes AAC technology to new heights. With multiple connectivity options such as Wi-Fi for internet and email access, Bluetooth, and infrared remote control, the Xpress offers unparalleled opportunities for communication. Multimedia tools such as MP3 and video players allow Xpress users to share their personalities in new ways.
Stands up to the demands of daily life. The Xpress is made of rugged magnesium and uses Flash memory to withstand the stresses of life. Swappable batteries, or an extended battery, ensure that Xpress users have the power they need to keep the conversation going all day.
Makes every voice - and every emotion - heard. Twin front-firing speakers allow Xpress users to be heard in virtually any environment. The new voices included with the Xpress are natural-sounding and take communication to the next level by adding emotion - laughter, crying, shouting and whispers.
Preserves familiar content. Existing DynaVox customers and their care teams will recognize the powerful InterAACT language framework designed to meet the communication needs of individuals regardless of age or ability level. Thousands of pre-programmed pages minimize the need for programming.
Includes comprehensive DynaVox Mayer-Johnson support. Xpress users and their care teams will have access to the full-range of DynaVox Mayer-Johnson's pre- and post-purchase support services including funding assistance, sales support, and technical support. The Xpress also gives the user one-touch access to technical support, where DynaVox personnel can remotely access the device and assist the user.
"Our clients told us they wanted a highly portable solution without sacrificing communication functionality," said Ed Donnelly, CEO of DynaVox Mayer-Johnson. "The Xpress accomplishes this objective, and delivers a quantum technological step forward, in a device that looks and feels like mainstream technology. We are excited to be introducing the most transformative speech device ever to the AAC community."
The Xpress will begin shipping to customers in late August 2009. Funding is available through Medicare, Medicaid and private health insurance providers.
About DynaVox Mayer-Johnson
DynaVox Mayer-Johnson develops a range of speech communication and education solutions designed to help children and adults challenged by significant speech, language and learning disabilities make meaningful connections and participate in the home, classroom and the community. The company's DynaVox line of speech communication devices gives a voice to the millions of people who are unable to use speech as their primary means of communication due to the effects of conditions such as amyotrophic lateral sclerosis (ALS or Lou Gehrig's Disease), stroke, traumatic brain injury, cerebral palsy, Parkinson's Disease, autism and mental retardation. The Mayer-Johnson line of print-based and on-screen education products engage students in the learning process and support academic achievement. Driven by a strong entrepreneurial culture, the company develops technology-based products and offers an extensive customer support program to assist individuals as well as their families and support professionals. For more information about DynaVox Mayer-Johnson, visit www.dynavoxtech.com.

SOURCE DynaVox Mayer-Johnson

July 23, 2:26 AM · David Gullen - Detroit Stay-at-Home Dads Examiner

My teacherCerebral palsy, also referred to as CP, is a term used to describe a group of chronic conditions affecting body movement and muscle coordination. It is caused by damage to one or more specific areas of the brain, usually occurring during fetal development; before, during, or shortly after birth; or during infancy. Thus, these disorders are not caused by problems in the muscles or nerves. Instead, faulty development or damage to motor areas in the brain disrupt the brain's ability to adequately control movement and posture.

My daughter has cerebral palsy. My wife and I started noticing delays in her development when she was around six months old. She would not crawl, or even attempt to, she would merely drag herself a few feet and stop. My wife knew there was something wrong, and I to my shame got upset with her, I did not want to believe that anything was wrong with my little girl. We took her to a neurologist who told us she was developmentally delayed and had some muscle tightness, but he would not diagnose her. Immediately we began physical therapy at Beaumont hospital, hoping that all she needed was a little help. Finally, when she was nineteen months old we went to the University of Michigan medical center where she was finally diagnosed. I looked at my wife and felt tears welling in my eyes, we both held our daughter and assured her that she would be fine. Two days later she took her first steps; gingerly holding on to the edge of our couch she let go and stumbled forward before falling with a little thump, she looked at me, smiled and raised her little arms over her head in triumph. I in turn broke down and cried holding her for several minutes until she whacked me in the head, letting me know that she'd had enough and wanted to go play.

Children are amazing. They can break your heart and mend it all in the matter of minutes. I believe my daughter heard the diagnosis, saw our reaction and immediately had something to prove. We were told she would not walk before her second birthday; she will be two at the end of the month and has been walking steadily for four months now. I learn from her everyday, I learn perseverance and courage in the face of adversity, I learn stark determination and indomitable will, I learn that no matter how much I love her today, tomorrow I will love her even more.

My wife and my child have taught me more about living in the past two years than I had ever imagined possible. They have shown me the man I can be, and though flawed, I am proud of the man I've become. Everyday I spend with my daughter is a gift. I watch her and realize the innumerable possibilities that life has, I see a fresh world through her eyes and notice things that I have not noticed in years; the smell of a flower, the song of a bird, being mesmerized by trees swaying in the wind. Though I am busier than ever, she makes me stop and notice the small things that often get left behind. She is my strength and I in turn try to be hers, everyday she renews my faith.

Being a parent to a special needs child is difficult. We are fortunate, our daughter's cerebral palsy is mild, with physical and speech therapy she should adapt well. It's hard work, the hardest work I have ever done, but it is rife with reward; a smile, a small milestone, laughter, family. Every morning when she wakes up, she greets me with a smile and I get to start my day with a hug from the most special person I have ever known, what could be better than that? I am a lucky guy.

To learn more about cerebral palsy go to this website: www.ucp.org, it is a wonderful site filled with information that is vital to understanding this issue. It is also where I copied the first paragraph of this article.

Author
David Gullen is an Examiner from Detroit. You can see David's articles at: http://www.Examiner.com/x-15012-Detroit-StayatHome-Dads-Examiner

Elizabeth Diffin/Medill
They look like submarines or spaceships. But have you ever wondered what it's like INSIDE a hyperbaric chamber for oxygen therapy? The Midwest Hyperbaric Institute in Bolingbrook offers a peek inside a device used to help treat wounds, neurological disorders, cerebral palsy and, increasingly, autism.



by Elizabeth Diffin

It could be any after-school program or day-care center, with a set of twins playing tug-of-war with a pillow and a serious-looking boy watching a television program. But what makes this room different from the typical cookies-and-juice session is the fact that these children are encased in large acrylic tubes where they’re breathing pressurized, oxygenated air.
These children have been diagnosed as being on the autistic spectrum, and they’re receiving a controversial treatment – hyperbaric oxygen therapy – in the hope that it will improve their autistic symptoms and behaviors.
A study published in March found that hyperbaric oxygen therapy, in which air is pressurized to simulate deep-sea levels, may be a viable treatment for autism. The research showed improvements in autistic children who had the therapy, particularly in their overall "autistic functioning," such as receptive language, social interaction and eye contact.
Dr. Dan Rossignol, a family practitioner in Melbourne, Fla., who authored the study, has two autistic children of his own. In 2006, after "buzz" began to build about hyperbaric oxygen therapy in kids with autism, he and his wife decided to try it for their younger son, who had only been speaking single words. After about 20 hyperbaric treatments, the boy began to put together three to four word sentences, piquing his father’s interest in the topic.
However, when Rossignol, who has a hyperbaric chamber in his clinic, began to look into research on hyperbaric oxygen therapy for autism, he said he was surprised to see there weren’t any double-blind controll studies on the topic. So he decided to do his own and published the results in BMC Pediatrics, an open-access online journal.
Doctors at Midwest Hyperbaric Institute in the southwest suburb of Bolingbrook, have been using hyperbaric oxygen therapy with autistic children for the past five years. In addition to the traditional uses of hyperbaric oxygen therapy – such as wound healing and decompression sickness – the facility has pioneered treatment for neurological conditions like cerebral palsy, stroke, multiple sclerosis and autism.
The facility traditionally has five or six children undergoing treatments during the same time period. The children have 40 sessions, called "dives," at 1.3 to 1.5 atmospheres, take a break for four to six weeks, and then return for 40 more dives. By the end of the 80 one-hour sessions, parents, doctors – and even independent therapists – say they notice some sort of improvement in the autistic kids.
In fact, Dr. August Martinucci, the medical director of Midwest Hyperbaric Institute, said that in the years he’s been treating autistic children with hyperbaric oxygen therapy, it’s always proven effective.
"I’ve never seen one [child] with no improvement whatsoever," Martinucci said. "It might have been minor, but there have been changes."
He does caution, however, that hyperbaric oxygen therapy is not the autism cure-all and that it works best in conjunction with the other more traditional therapies.
According to Martinucci, there’s not a single "silver bullet" that will be a cure. "It’s a spectrum disease," he said. "You have to have a spectrum of treatments."
Parents admit that they’re willing to try almost anything to help their autistic child improve.
Brian McNally, whose 6-year-old son, Sean, was diagnosed with autism about four years ago, said the boy is on a variety of medications and supplements, goes to physical and occupational therapy, and adheres to a strict diet.
"We’re throwing the kitchen sink in to see what sticks," McNally said.
But he said that in the 28 sessions Sean has undergone, he’s already exhibited signs of improvement. Sean makes eye contact more often and obeys directions. He just learned to ride a bike. And next school year, he will be part of a partially-integrated first grade class, participating in classes such as art, music and lunch with the so-called "normal" children.
"They’re tiny gains," McNally said. "But all the tiny gains add up."
Skeptics say that these supposed gains may simply be a case of the placebo effect, with parents seeing an improvement only because they’re looking for one. In traditional drug studies, the placebo effect is observed when the participants taking a "sugar pill" report medical improvement.
In Rossignol’s study, a striking 73 percent of parents with children in the control group rated their child as improved, without knowing they hadn’t been given true hyperbaric oxygen therapy.
"The placebo effect is very powerful," said Dr. Alan Rosenblatt, a Chicago neurodevelopmental pediatric specialist. "I think when there is no cure, anything is a cure."
Rosenblatt said his skepticism is rooted in his own understanding of neurophysiology, as well as the success he has seen as a result of behavioral interventions in very young children. He said the research community might be better served by focusing on the more proven therapies, and their theoretical foundations, when it comes to treating autism.
"You have to have a healthy dose of skepticism even for a proven therapy," Rosenblatt, who is on faculty at Feinberg School of Medicine, said. "More understanding of the underlying mechanisms of the disease will lead to the most meaningful interventions and treatments."
In fact, no one knows for sure why hyperbaric oxygen therapy might cause the improvement so many parents and therapists have noticed. But Martinucci speculated that the increased blood flow from the hyperbaric oxygen therapy acts as an anti-inflammatory agent that soothes the swelling many autistic children suffer from in their brain and gastrointestinal tract.
Patients being treated for a variety of conditions also mention the increased "clarity of thought" brought on by the hyperbaric oxygen therapy. Jennifer, who asked that her last name not be used, is the mother of 3-year-old autistic twins being treated at Midwest Hyperbaric Institute.
"Both of my kids seemed less foggy," she said. "They were looking at me and getting it. They seemed more ‘plugged in.’"
And the energetic boys running down the hallway to "blast off" in the spaceship-shaped hyperbaric oxygen therapy chamber certainly seem a far cry from the withdrawn children their mother described.
"They love it here," she said, noting their roughhousing in the hyperbaric chamber.
Indeed, many autistic patients seem to do particularly well when it comes to hyperbaric oxygen therapy, Martinucci said. Children who benefit from deep pressure find the treatment soothing and some of them have mentioned that their heads "feel good" after the treatment.
"We have more problems with the parents than with the kids," Martinucci said. "The kids are happy to go in there."
Of course, there are bigger problems than overprotective parents when it comes to the application of hyperbaric oxygen therapy to autism. Rosenblatt doesn’t think that Rossignol’s study is conclusive enough for him to recommend to patients.
"I can’t say it’s a proven therapy for autism," Rosenblatt said. "But I do think we ought to take this study seriously and challenge people to replicate it."
Rosenblatt said that he’s happy the researchers attempted to do a double-blind study, something that is notoriously difficult with a spectrum disorder. But he said that if the research is able to be replicated – preferably by a more authoritative academic center – it’s more likely to be embraced by the mainstream medical community. But until that point, he said he would recommend parents to focus on the proven interventions, such as behavioral and speech therapies.
"My advice would be to put neurodevelopmental therapies at the center of your total therapeutic package," Rosenblatt said.
And if patients are insistent on trying other treatments, Rosenblatt said to explore them one at a time to determine their true impact.
"Many parents won’t feel comfortable until they’ve tried every possible intervention to help their child," Rosenblatt said. "My heart goes out to these parents. I don’t envy them their choices and decisions."
Many of those same parents are hopeful that increased study of hyperbaric oxygen therapy in autistic kids will have a different sort of benefit: the financial kind. Hyperbaric oxygen therapy treatments are expensive – a set of sessions can cost several thousand dollars – and many insurance companies aren’t willing to cover them because they’re considered "off-label."
Tina O’Sullivan, whose 17-month-old son, Sean, is being treated for a brain injury – not autism – at Midwest Hyperbaric Institute, said the insurance payments are a constant battle.
"Insurance covers certain things," she said. "But these treatments are essentially his first year of college."
Rossignol said he hopes that if his study is able to be reproduced, it might open the door to additional approved treatment options for autism. And he believes that in the long-run, those treatments will have a larger benefit.
"If we can come up with treatments that lead to improvements, the savings to society could be huge," Rossignol said. "If these studies continue to come out, it might become a standard treatment."
But in the meantime, he hopes that for the people who can afford to pay for hyperbaric oxygen therapy, his study provides some reassurance.
"If parents want to do this and have the money, it certainly seems to be safe," Rossignol said. "Parents can know it’s not going to be harmful."
In fact, he said that the main finding of the study was that the hyperbaric oxygen therapy was well-tolerated by most children. And he was quick to point out that although they did observe some gains, there were some kids who didn’t necessarily improve, which was expected.
"Within a study, there’s always going to be some who improve and some who don’t," he said. "We take a reasonable approach: This is a promising treatment."




Elizabeth Diffin/Medill
Sean McNally, a 6-year-old with autism, is more than a quarter of the way through his hyperbaric oxygen therapy. His parents and teachers have noticed positive results.












Research looks at hyperbaric treatment and autism
The hyperbaric oxygen treatment study for autism, published in the March issue of BMC Pediatrics, was a double-blind, controlled trial.
Dr. Dan Rossignol and his colleagues studied 62 children between the ages of two and seven who received 40 treatments over the course of four weeks. The treatment group had hyperbaric oxygen therapy with air pressurized to a standard 1.3 atmospheres (the rough equivalent of deep-sea diving to 10 feet), while the control group breathed only slightly pressurized air to mimic the other treatment.
The children, their parents and the evaluating physicians did not know which group the children were in. The hyperbaric technicians, who had no input into the treatment, were the only ones aware of each child’s status and were instructed to keep it secret.
At the beginning and end of the study, the parents and physicians filled out standardized scales rating the child’s functioning in several different areas. The evaluations were then compared to determine whether the child had improved as a result of the therapy. Children in the treatment group scored significantly better on the Clinical Global Impression scale, with the greatest improvements found in overall functioning, receptive language, social interaction and eye contact.
Analysis done after the study’s completion revealed that higher-functioning autistic children, who initially scored in the top 50 percent of the scales, showed the fastest improvement. Children over the age of five also showed greater advances than their younger counterparts.
Rossignol was quick to point out that those results need to be studied further to determine if they are a "true finding."
"We don’t know for sure why [the therapy] worked," he said. "But the nice thing about this study is that a condition that’s felt by most people to be untreatable is showing potential improvement. We’re not saying this is an answer or a cure. But it might be good in some children. It’s promising."

Posted on: Tuesday, 7 July 2009, 06:59 CDT

Deep brain stimulation may improve movement and quality of life in patients with a subtype of cerebral palsy (CP) and could be an effective treatment option. Cerebral palsy with dystonia-choreoathetosis is a common and progressively disabling disorder in children and adults for which no effective treatment currently exists.
Bilateral pallidal deep brain stimulation (BP-DBS), a surgical procedure in which electrodes are implanted to stimulate parts of the brain to reduce involuntary movements and tremors, has been shown to be an effective treatment for primary generalized dystonia. However, the effect of this treatment on a secondary dystonia such as dystonia-choreoathetosis is not clear.
To investigate the effect of BP-DBS on movement skills, functional ability, and quality of life, Marie Vidailhet and colleagues of Salpetriere Hospital, France, implanted leads in the globus pallidus internus (GPi) area of the brain of 13 patients with dystonia-choreoathetosis CP. All patients were evaluated for changes in the severity of dystonia-choreoathetosis using the Burke-Fahn-Marsden dystonia rating scale before surgery and again after 12 months of continuous neurostimulation. Quality of life, cognitive function, and mood also were assessed.
After one year, BP-DBS resulted in improvement in the Burke-Fahn-Marsden dystonia rating scale movement score in a majority of patients. Eight patients showed between 21 percent and 55 percent improvement; two patients showed little benefit; and three had no benefit or deteriorated slightly.
Importantly, functional disability, pain, mental health-related quality of life, and social interaction seemed to improve, and there was no worsening of cognition or mood.
The authors report one key factor to a good outcome is the optimal placement of leads in the GPi area of the brain. Patients with leads positioned outside the boundaries of the GPi showed no beneficial effect.
Despite promising findings, researchers note that the study involved a small number of patients and should be interpreted with caution. They call for further studies to evaluate the effect of DBS on more complex and common types of CP, particularly in children.
SOURCE: Lancet Neurology, July 2009
Source: Ivanhoe

Caroline Phillips
24.06.09 One woman has thrown away the wheelchair to which she was confined for two years.

She suffered from ME (chronic fatigue) for 15 years and now, confounding medical orthodoxy, is symptom-free.

Another patient says he endured asthma intermittently for 30 years - and is now cured.

Improbably, both say their transformation is down to yoga. They are not alone, because many major health benefits are now being claimed for the discipline.

The number of people practising in Britain has tripled in the past decade and now the first NHS yoga facility in a primary healthcare centre has opened in London's Kentish Town.

"It specialises in yoga for diabetes, back pain and breathing difficulties," says its founder, biochemist Dr Robin Monro, also founder of the Yoga Biomedical Trust, which runs clinical trials into yoga and offers lessons.

A recent study showed that yoga can significantly lower levels of triglycerides - the fats in your blood which if elevated can lead to heart disease.

Another concluded that yoga can increase brain gamma-aminobutyric levels, which when lowered are associated with depression, anxiety, epilepsy and even Alzheimer's.

It's also known to lower blood pressure, cholesterol levels and improve memory, sleep, energy, gastrointestinal function and tolerance to pain. In some instances, chronic pain can be eliminated.

Jo Manuel is a practitioner who helps sufferers of illnesses from muscular dystrophy to Parkinson's.

In 2004, she founded the Special Yoga Centre and launched Yoga for the Special Child, a unique service in Britain for disabled children.

For a small, charitable facility in Kensal Rise, it punches way above its weight - Jo's techniques have been adopted by all New York's special-needs schools.

It was to the SYC that Samantha Cameron took her and David's late son, Ivan, who suffered from cerebral palsy and epilepsy. "Sam said yoga helped her son relax and find more peace in his body," says Jo.

Last month SYC held a charity art auction and raised a whopping £100,000 - with artists from Marc Quinn to Sam Taylor-Wood personally donating works - to fund its work.

Television presenter Gaby Roslin said: "I've watched Jo working with autistic children. I'm astounded by what she achieves with kids who can't normally even make eye contact or sit still."

The centre teaches several forms of yoga, from ashtanga to kundalini, in general classes and has 40 instructors.

There are special classes for adults with everything from ME to MS and sessions for pre-natal teenagers. Jo's speciality, a hatha-based practice, is the one she uses to treat 350 special-needs children a week.

Jo believes yoga has a positive effect on even the most serious illnesses. Fiona Agombar, a former high-flying executive and author of Beat Fatigue Through Yoga, is one of the centre's teachers.

"I had ME for 15 years, I was in hospital for months with appalling fatigue and muscular pain, and in a wheelchair for two years.

"The medical view is that after five years with ME, you don't get better," she says. "With yoga, I've become symptom-free. Last year I went trekking in Nepal."

So can yoga cure any illness? "MS, for example, isn't going to be stopped by it," says Jo. "But it can slow the degeneration and help sufferers manage the pain. I also see Down's children meeting their developmental milestones earlier than those who don't do yoga."

Dr Monro believes more investigation is necessary if yoga is to be accepted as a part of everyday healthcare.

For Jo, however, success is measured in smaller steps, such as when the mother of one disabled girl who attends SYC told her recently that thanks to Jo's yoga classes her daughter had slept properly for the first time in nine years.

Special Yoga Centre, The Tay Building, 2A Wrentham Avenue, NW10 (020 8968 1900, www.specialyoga.org.uk).

Pamper Evening 26 June, 5pm-10pm, £5 entry fee, treatments from reflexology to Indian head massage.

For donations visit www.justgiving.com/syc/donate

A TEENAGE disabled girl has finally been able to tell her mum she loves her after being given a voice.

It’s changed her life massively, people won’t realise how much - mum Joanne, above with Jodie, 16, on the machine enabling her daughter to speak for the first time

Jodie Griffiths, 16, suffers from cerebral palsy and has always struggled to express herself.

But now, thanks to a £10,000 communications aid, she can finally tell the world how she feels - and release her wicked sense of humour.

Jodie, who lives in Grasmere Road, Redcar, with her mum, has wasted no time in making the most of the machine. Mum Joanne, 42, said: “One of the first things she said was ‘Mum, I love you.’ It was wonderful. I knew every part of her, just by the way she looked, I’d know how she was feeling. But now she can really communicate. It’s emotional because I didn’t think she would ever be able to say anything like that.”

The communications console, which mum Joanne boasts is better than the one theoretical physicist Stephen Hawking uses, has opened up the world to Jodie.

“It’s changed her life massively, people won’t realise how much,” she said. Simply by using her head to press a switch, she can select a word or phrase, play music or games, watch video, access the internet, and even operate the TV.

Joanne said: “She’s very outgoing, very sociable and has a wicked sense of humour.”
And it’s this cheeky sense of humour that has not only enamoured people to her but on the odd occasion landed her in trouble.

Jodie, who attends Kirkleatham Hall School, said: “I have already been in trouble at school because I kept putting my music on. My friends thought it was funny but my teachers did not.”

Prompted by mum, Jodie also admits that she told a man working at B&Q: “You’re looking very sexy today.”

The money to buy the console came via two different sources.

A panel of young people from the borough awarded Jodie with £7,000 from Redcar and Cleveland Council’s Youth Opportunity Fund.

Joanne said: “They usually don’t give out personalised grants of that amount of money but when the children on the panel heard about Jodie their reaction was, well, if we’ve got a voice then Jodie should have a voice too.”

A fundraising night at Redcar's West Two raised £2,600. Joanne said: “At the beginning, we knew we’d have to raise the money ourselves, then when we got the grant, I just couldn’t believe it.”


Jodie, a Middlesbrough FC season ticket holder, said: “Thanks to the kids on the panel my life has changed so much in such a short time. I can now tell people how I feel and what I want. In fact it’s hard to shut me up.”

Jun 22, 2009 (Lodi News-Sentinel - McClatchy-Tribune Information Services via COMTEX) --

Lodi Memorial Hospital is the only place in the greater Sacramento and Modesto areas that has a new piece of equipment available to patients seeking to improve their ability to walk normally again.

This includes those who have suffered from a stroke, an incomplete spinal cord injury, cerebral palsy or, like Linda Barnard, of Sacramento, multiple sclerosis.
After being diagnosed with multiple sclerosis 10 years ago, Barnard was steadily losing her ability to walk. The disease worsened until the former athlete struggled to walk independently from her office to a nearby restroom at work.
Barnard, a marriage-family therapist in the Sacramento area, learned about the machine through one of her clients, who saw a segment on the "Today" show. When she Googled the nearest location, she found it in Lodi.

In the last six months, Barnard has regained enough mobility to stroll around a golf course. The 59-year-old attributes her full recovery to the NESS L300, a new FDA-approved wireless electronic device.

"It really works. I can already see positive benefits," she said.
The NESS L300 is worn in two parts, a small transmitter in the shoe and a device strapped below the knee. When a patient tries to walk, the L300 sends electronic signals to stimulate the peroneal nerve which, in turn, signals under-active muscles to help patients lift their foot off the ground and get them walking again.
Barnard's physical therapist, Jason Locke, at the hospital's outpatient clinic, explained how the NESS L300 can help people learn to walk again.

How does this machine work?Basically how the machine works is, we use a cuff that goes on the lower leg, which we connect electrodes to that stimulate the muscles of the foot.

A gait sensor in the shoe acts as a switch. When the person is walking, the machine will sense the pressure and turn the machine off ... so there's no contraction of the muscle. When your foot is on the ground, you don't need that muscle.
When you lift your foot, that sensor turns the machine on.
When it comes to physical therapy, what is 'foot drop'?It's just a general term for the foot not to be able to come up for walking.

For Linda, who has MS, it's a central nervous system disorder. If you compare it to an electrical generator for our home, it sends power to turn on the lights. Our brain is very similar. It sends a message through our brain to our muscles.
How is this machine unique to others that offer similar results?We've been using electrical stimulation for a long time. (The NESS L300) is just the wireless technology that enables us to make a big impact for patients.
It's more functional for them because the physical therapist doesn't have to program anything. In the past, we would have to get the electrodes in the right place every time to stimulate the muscles.

I understand there are not many of these machines around. How did Lodi Memorial come to acquire one?We heard about the technology about a year-and-a-half ago, and we were able to acquire it by a generous donation by the hospital and the auxiliary.
They are very expensive. A take-home unit is about $6,000 and doesn't include all the auxiliary equipment we need here, including a PDA that stores all of the patient information.

How have you come to believe it can help people regain mobility?I think the biggest thing is that it provides some functional return. It makes people more functional again.

Most of these people who have foot drop are using some sort of brace. It's cumbersome and not natural at all. This unit has created a functional way to improve their lives. Lots of people walk faster, their gait improves and they can walk on uneven ground a little better, especially stepping over hills.

It also reduces tone (in the leg). It's like the idling speed in your car. The patient who has had some sort of brain injury, their tone usually runs too high in the legs. It's just more rigid, and it's hard to move. This machine allows people to move a little better.

What have patients who have used the machine said about it?I had one patient who wasn't able to walk very well because of fatigue. This machine has enabled her to walk further.

A year-and-a-half ago she was able to walk around Disneyland when she was only able to walk from bench to bench before, because she would lose her balance or fatigue.
It's been amazing to see people who have had a life change and how this has positively affected their lives. We've had some patients come from Nevada, and one from as far away as Bakersfield.

Free patient screeningWhen: Wednesday from noon to 4 p.m.
For more information: 333-3136.

By St Helens Star newsdesk »

FRANK Lees might have cerebral palsy... but that won’t stop the 20-year-old reaching for the sky later this year.

Frank, pictured right, from Prescot, enjoyed a three-day selection course at RAF Cranwell and has been given the chance to learn to fly through the charity Flying Scholarships for the Disabled.

Born prematurely, Frank now suffers from both cerebral palsy and hemiplegia, which limits his mobility.

He will be undertaking a residential four-week flight training course at Lasham Airfield, Hampshire, with the British Disabled Flying Association.

The scholarship includes all flight training and associated ground school tuition, as well as his accommodation.

The aim of FSD is to help disabled recipients restore confidence and regain self-esteem through the physical and mental challenge of learning to fly a light aircraft. The thrill and freedom of flying enables them to reach previously undiscovered potential and helps view their lives in terms of their abilities, not their disabilities.

For many past scholars, the new-found confidence that FSD has instilled in them has helped them to resume or start new careers.

The charity is financed through sponsors, charitable trusts, public donations and local fundraising.

Additional information on the FSD charity can be found on the website at toreachforthesky.org.uk Since 1983 nearly 300 disabled people have experience the thrill and freedom of flight through the scheme.

Known as hippotherapy – stemming from the Greek word “hippos” for horse – the treatment uses the multidimensional movements of a horse to treat patients who suffer from muscle or movement dysfunction. It’s said to improve balance, posture, mobility and function.
With his arms outstretched, 6-year-old Tyson Thompson concentrated Sunday on keeping his posture straight and his leg muscles strong as he balanced on the horse moving beneath him.

The boy looked miniature perched on the back of the 1,400-pound horse named April. Maintaining steadiness proved even more difficult without a saddle, especially for Thompson, who has cerebral palsy.

“It makes him very aware of his body positions,” said Ellie Giffin, Thompson’s mother. Riding 18-year-old April – a breed of draft horse known as Shire and related to Clydesdales – is also the only physical therapy Thompson does in which his symptoms don’t regress, Giffin said.

Known as hippotherapy – stemming from the Greek word “hippos” for horse – the treatment uses the multidimensional movements of a horse to treat patients who suffer from muscle or movement dysfunction. It’s said to improve balance, posture, mobility and function.

“They can’t re-create this in a clinic,” Giffin said.

Giffin and her family also are fortunate to be related to Mike and Teri Sardinia. The Sardinias own the Clayton, Wash., farm and the horse used in Thompson’s therapy. The boy has been working with the horses since he was 3 years old.

Mike Sardinia is a biology professor at Whitworth University. Two years ago, two of his former students did their research project for his animal physiology course on the effects of hippotherapy; Thompson served as their test subject. This year, undergraduate biology majors David Ellis and Aly Shaffer, both 22, took the research a step further to determine how long Thompson’s muscles benefited from each session.

The students measured the electromyograms in the boy’s muscles before, and then each day after each therapy session for a week. The electromyogram is a graphic representation of the electrical activity that occurs when muscles contract.

For most people, those muscles are in sync when they are contracting in the limbs. But for people with cerebral palsy, the electromyograms are out of sync for the same muscles, causing patients to be off-balance.

“The idea of being on a horse is that it moves in a very synchronized way; he has to use his muscles in sync with the horse,” Ellis said.

Ellis and Shaffer recently presented their research at the Spokane Intercollegiate Research Conference. Their research determined that Thompson had better muscle coordination and balance for at least two days following his sessions with horses.

Mike Sardinia said he hopes the research will be helpful in establishing more local hippotherapy options. When Giffin went looking for help, there were only two similar programs in the Spokane area, and each had a long waiting list.

In addition, Sardinia said there is much anecdotal evidence to support the benefits of hippotherapy, but very little solid research to prove it works.

“We want to spread this around to anybody that is doing this kind of work,” he said.

Already, the need is growing.

On Saturday, a newly formed group in Spokane called Free Rein held an event to raise money for similar therapy.

Founded last summer, Free Rein allows 22 children and adults with physical, mental and emotional disabilities to ride and connect with horses. The nonprofit wants the program to grow and eventually serve 100 riders a year.

But the therapy is costly, and often patients are living on limited incomes and have higher living expenses because of a disability.

The Sardinias said they have only worked with Thompson so far, but in the future would consider taking on more riders.

Giffin said that without the therapy, her son’s progress would have been slower. He no longer wears leg braces.

“The biggest thing is that he has developed strength in his torso,” Giffin said. “He couldn’t sit before without help.”

A WHEELCHAIR-BOUND teen-ager is trying to defy overwhelming odds to become Scotland's first disabled football manager.

Craig Carter, 16, has never been able to play because he was born with cerebral palsy. He took up coaching instead and was put in charge of his school's team. Now he is signed up to an official SFA coaching course and hopes one day to lead a professional team.

The teenager, from Aberdeen, said: "I never let my disability get in my way. I don't get frustrated by it and it definitely doesn't control my life."

After talking with teachers at his school, St Machar Academy, he was put in charge of a school team. He leaves school this summer but is refusing to take the route of most disabled people and end up behind a desk in an office.

As well as the SFA course he's also signed up to an HND in sports coaching at his local college.

His mother Jennifer, a nurse, said: "We spoke for a long time about what he was going to do after school and when he came up with this we didn't think for a minute that he couldn't do it."

By Sharon Sullivan

GRAND JUNCTION, Colo. — In the spirit of Jackson Pollock, local amateur artists created a painting at The Art Center Tuesday, by rolling wheelchairs across a canvas stretched over a portion of the parking lot.The Pollock Project was named for the famed late abstract expressionist artist known for painting on the ground, and flinging paint randomly on the canvas.

Although not every painter Tuesday could cut out his or her own stencil — which was then applied to a roller in front of the wheelchair — most could at least choose the shape and color they wanted to add to the canvas.“We have quite a few clients who love doing art — especially the explosive colors,” said Nikki Benning, day program supervisor at Mesa Developmental Services.“A lot of people didn't show much interest in anything until we started doing these art projects. When you mention going to The Art Center, or doing art projects, they're ready. There are lots and lots of smiles.”The Pollock Project was a collaboration between The Art Center, MDS and Very Special Arts of Colorado and their Arts for All program. The nonprofit's executive director Damon McLeese, and his daughter, Zoe, helped supervise the event.VSA of Colorado is a branch of Very Special Arts — an international nonprofit organization founded in 1974.

McLeese calls it an “Arts for All mobile art studio. With a home office/gallery in Denver, he brings adaptive art equipment to communities around Colorado at least 20 to 30 times a year for similar projects.”“The nice thing about this, everyone has added something to this,” McLeese said. “So often things are done for them, or to them. This is a much more inclusive process.”Although it may look like one huge abstract painting, there are “lovely compositions within,” McLeese said.

Clients chose all kinds of shapes, including a chocolate chip cookie, birds, fish, and big geometric shapes.Three of the canvases within the larger painting were later stretched and placed in frames to be hung at the Art Center and at MDS, 950 Grand Ave.The Pollock Project was initiated by local artist Mark Saro, owner of Unishape Adaptive Equipment, a national company that builds products for people with developmental disabilities. Saro contacted Denver's Very Special Arts to bring the project to Grand Junction. Saro began sponsoring art classes for MDS clients a couple of years ago. Since then other groups have helped provide art classes for handicapped individuals.“Our goal is to bring back art programs for the disabled,” Saro said.Tuesday was the first time The Art Center has collaborated with the nonprofit VSA of Colorado.“We'll probably bring them back. People are having so much fun,” said Art Center Director Cheryl McNab.The Art Center offers an art program once a month for the disabled. This month's event was sponsored by Wells Fargo Bank.MDS clients have a wide range of disabilities, including multiple sclerosis, scoliosis, degenerative spine disease, quadriplegia, and cerebral palsy. Jessica Snarr is a 22-year-old with spina bifida. She enjoyed maneuvering her wheelchair across the canvas, Tuesday.“I like it. It's really neat for us,” Snarr said. “I love art.” Reach Sharon Sullivan at ssullivan@gjfreepress.com.

The next generation of Great Britain's Paralympic team may have been discovered in Manchester this week after an encouraging talent identification day.

Despite great success in China - Britain won 42 gold and 102 medals in all, finishing behind only the hosts in the medal table - the hosts of the XIV Paralympic Games are not prepared to rest on their laurels, searching for future success through talent identification days.

Forty people attended the sixth multi-sport, multi-disability ParalympicsGB talent identification day at Manchester Regional Arena. It was the third such event since Beijing.

ParalympicsGB - formerly known as the British Paralympics Association - organise the try-out days to identify those with exceptional talent.

The London Paralympics, which begin in 1180 days, may come too soon for the hopefuls who were able to choose from 12 sports this week, but the 2016 Games are a real possibility.


ParalympicsGB talent officer Tabo Huntley told PA Sport: "We need to give everyone the opportunity to try out different sports.


"But this is not about participation. This is about giving those who have talent to be handpicked and placed on to programmes and high-performance environments."

Once individuals are recognised as having exceptional talent, they are transferred into their sport to hone their skills through specialised coaching.

Luke Kelly, who uses an electric wheelchair due to his cerebral palsy, was one participant hopeful of reaching the Paralympics.

The 15-year-old from Manchester told PA Sport: "I saw Beijing and I thought I really want to be a Paralympian when I grow up. This talent day was my chance and I came along."

A WOMAN with cerebral palsy has been washing herself with wet wipes for the past six weeks because she does not qualify for a new bathroom under means testing.

Jackie Payton is “losing dignity” because she has to sit on the toilet in her terraced house wiping herself down just to have a wash.

For the past few weeks she has been unable to get in the bath for pain relief or water massage because her body’s muscles have deteriorated.

The problem boils down to government means testing, which means that because of Mrs Payton’s income she would have to stump up £13,500 before she could claim a Disabled Facilities Grant.

The 48-year-old, of Rainbow Hill, contacted South Worcestershire Care and Repair (SWCR), which oversees the grant in January.

But when she was assessed she was told she did not qualify for a cash grant which would have paid for a walk-in ‘wet room’ shower fitted in her terraced home.

Bosses at Care and Repair said even they were surprised at the means test results but their hands were tied by its outcome.

Care and Repair is an independent home improvement agency, funded by several groups including Worcester City Council and Wychavon District Council, which offers advice as well as grant aid to the elderly, disabled and people on low incomes.

Mrs Payton said: “It’s decisions like this that make me a disabled person and not a person with a disability.

“It’s about independence.”

She said the figure being given from the means test showed the process was flawed.

“They take into account my husband’s work income, my weekly disability benefits and the only thing it doesn’t take account of is a small pensions payment,” she said.

“It doesn’t take any account of our outgoings.

“It’s flawed and I’ve said that from day one.”

Her husband Alan Payton works long shifts for a printer firm in Blackpole and in total with benefits the family bring in about £22,000 annually.

Mrs Payton said it was “unfair” to expect her husband to help her wash after he had been out working all day.

“It’s an odd one,” said Andy Paul, Care and Repair agency manager.

He said that because the couple were below the retirement age, the means test worked against their potential grant award. However, Mr Paul said he was so surprised by the £13,500 figure he had ordered an independent case worker to re-assess Mrs Payton but came up with the same result.

“In all there have been two re-assessments looked at by three case workers, and the results are the same,” he said.

Meanwhile, Mrs Payton is in limbo and has said it will take the couple “years” to save for a bathroom.

Her only option is to apply for help from a charity.

Although the condition she was born with is not life-limiting, a shower offers pain relief and aids her mobility by massaging the cramped spasming muscles.

“I’m sure there are others out there who will be in the same boat,” said Mrs Payton.

By SUE GYFORD
WHEN Mark Cooper arrived in the pub, he thought he was all set for a good night out.

He had no trouble getting through the door in his wheelchair, and settled down for a couple of pints with friends. It was only later he had a problem.

He explained: "I went up to the bar and said 'Where's your disabled toilet?' and they said 'We don't have one'. "I thought 'What am I supposed to do now?'"

The customer toilets were down a steep flight of stairs, so he had to leave 56 North in West Crosscauseway with friends, and go 200 yards down the road to another bar, The Native State, which he knew had an accessible toilet.

The 24-year-old was inspired to launch a campaign to improve the lot of disabled pub-goers in Edinburgh. He has the support of MSP George Foulkes and Councillor Angela Blacklock, who has tabled a motion for today's meeting of the full council calling on the city to publish a list of pubs detailing their accessibility.

Mr Cooper, who has cerebral palsy, will make a deputation to the meeting and would like to see it be a condition of receiving a licence that pubs be made completely accessible to all, with the exception of a few older buildings where it is impossible.

The Disability Discrimination Act 2005 rules that pubs cannot discriminate against disabled people, but critics say it is too easy for them to opt out as long as they can provide a reasonable excuse.

Cllr Blacklock said: "This isn't a huge ask of the council. We have licensing standards officers in place who could carry out the work. It is the very least we can do for wheelchair users."

Mr Cooper added: "When I run into problems I feel angry because it's disrupted my evening. My friends just see me as normal, so why can't I just go out for a pint instead of having to think that I can't go to bar 'X' because I can't make full use of it?

"I'm quite an independent guy, so I don't like having to ask anybody if they can help me to go to the toilet.

"I'm hoping to get out of this a kind of good pub guide so that people can say I'd like to go out on Friday to a particular pub and have a look in the book and see if it's got disabled access. Disabled people have the right to have as much fun as anybody else."

Mr Cooper, who lives in Gracemount, has launched a petition on Facebook under the campaign title, Barred!, whose membership is more than 200 and rising fast.

James Sutherland, director of 56 North, said he sympathised with Mr Cooper's situation, but the building was leased and predated the introduction of regulations.

He added: "We take access very seriously but we're constrained by the building. There's not really any scope."

A line of toys designed by Brown and RISD students in a 2006 course targets children with neuromuscular diseases and impaired motor skills.
Ask a child if he would rather do physical therapy or play with a remote control car and the answer will be obvious. But now researchers at Brown and the Rhode Island School of Design have designed a way for him to do both, by creating toys specially developed for children with neuromuscular diseases.

The toys, originally designed by students in a joint Brown-RISD course, are meant to complement the benefits of physical therapy for children with Cerebral Palsy, said Professor of Orthopaedics Joseph Crisco of the Warren Alpert Medical School.

By using the toys, the children effectively “have therapy for a much longer period of time,” Crisco said, adding that the key of the project is to disguise therapy as play.

The development of the toys resulted from a collaboration between Crisco, Clinical Assistant Professor of Clinical Neurosciences Karen Kerman ’78, RISD Associate Professor of Industrial Design Khipra Nichols and students in Crisco’s course, “Toys for Rehabilitation.”

Crisco said he and his colleagues came up with the initial concept for the product in the fall of 2006. His students designed the actual toys throughout the fall semester. The students worked on several different concepts, including specially designed walking shoes to help children with climbing disabilities and remote-controlled toys for children with hemiplegia, he said.

According to Crisco, many children with neuromuscular diseases are unable to use the same toys as their friends and siblings because these toys frequently require the use of fine motor skills, such as pulling a trigger or pressing a button. To overcome this problem, Crisco’s students pulled out the wires of common toys and redesigned them to be controlled through movements of the wrist or arm.

The result is similar in concept to the Nintendo Wii remote, Crisco said, except that the new toys respond only to movements made by the forearm — which is enclosed in a brace — rather than to full-body and arm movement.

As the goal of the project was to use the toys for “targeted joint therapy,” Crisco said, the designers did not want the toys to respond if the child were “standing on (his) head.”

The researchers’ goal is to send the toys home with the children to augment their other therapy, Crisco said, adding that the toys have data logging capabilities which can tell doctors how much the children have been using them.

In 2008, the group received a grant to develop prototypes of the toy controllers and began conducting a small pilot study. Now the researchers are applying for funding from the National Institutes of Health to upgrade the toys to commercial quality.

If the researchers get funding, Crisco said he would like to involve students in further developing the toys and researching their effectiveness.

WICHITA, Kansas – Yoga is often used for exercise and relaxation, but now doctors are recommending it for children with special needs. It’s just one example of new approaches to old medical problems. What’s meant to be a workout is just fun for six-year-old Jami. She has cerebral palsy, which caused her muscles to constrict and tighten. So, her doctor recommended yoga. "I was surprised-- I guess more hopeful that it would work,” said Jami’s mother Patty Moulds. “It kind of makes sense when you think about yoga is stretching."

Instructor Sheryl Haynes uses several yoga poses to strengthen Jami’s lower back and leg muscles. "Since she's a tippy-toe walker, getting stretched out back here, the calves and tendons back through here -- we're working on things that do that,” Haynes said. She also works with kids who have Down’s syndrome and other developmental delays. She uses nursery rhymes practice their language skills at the same time.

It’s modern therapy based on an ancient exercise. Another unusual treatment that more parents are turning to for help is at a chiropractic clinic, where the doctor claims he can cure colic. What's more, he says it only takes a few weeks. Colic affects one in five babies, causing uncontrollable crying. "Constantly from morning until night, into the wee hours of the morning,” said Rachel Murphy of her baby’s crying. “It was 24 hours she cried." But Ella was treated by Dr. Dennis Scharenberg, who believes he knows what causes colic. He says a weak valve between the babies’s small and large intestines leads to painful indigestion. "And when I strengthen that muscle, it stops leaking, and when it stops leaking, the colic is gone,” Dr. Scharenberg said. “It's gone and it doesn't come back." He simply messages the muscle for about 20 minutes several times a week. "After about three treatments, we noticed a significant improvement -- a lot less crying, more sleep at night,” said mother Crystal Jones. All of the moms say they were skeptical at first, but desperate enough to give it a try. "It's like it's too good to be true, but it is, and it works,” said mother Jennifer George. So, why don’t other doctors do it? Dr. Sharenberg says it’s a technique he developed himself and actually volunteers his services to get the word out, hoping it will bring help for the helpless and peace of mind for parents.

“What’s in a name?” Shakespeare wrote in Romeo and Juliet. “That which we call a rose by any other name smell as sweet.” I ask you, what do you think of the word Handicap? How does it affect you? How does it make you feel? And, how does it digest within your own conscious and subconscious being. Does it make you angry, hurt, enraged, or does it make you feel beside yourself? Does it leave a bitter taste in your mouth, or does it make you feel more at ease or comfortable?

There are so many definitions for this word; handicappable, disabled, cripple, and challenged; these are only a few descriptives’ that are used regularly throughout our world today. Each on there own, carry a big weight. Each, by themselves, takes on a whole new meaning, connotation, and undertone. Depending on how we see, think, and perceive things, within our own selves, lives, and the world around us. That will be the ultimate determining factor. It all depends on how we see things and look at life. Our impressions, perceptions, and concepts- This is called our belief structure. All of these factors make up conviction. Particularly, what we were taught by our own parents; friends, and family members.

Each feeling, and each judgment, based on reason or actual experience, along with specific prejudices and pre-conceived opinions and ideas can and will affect us, as well as alter how we live, and view the world and people around us. They can all vary a person’s belief system. What one person thinks is positive; another could find it down right rude and insulting. I pose this to my readers to not only open up this word for discussion, and dialogue, but to create a safe, and secure atmosphere where we all can talk freely and openly as well as acquire the benefit of each others experience, so that we can gain a whole new outlook, understanding of, and interpretation to not only encounter what that word means to us, but, what it means to each other, and all it represents.

Having Cerebral Palsy, myself, and hearing these words all my life makes me think about how others feel. It makes me want to ask questions, see how other people think, deal with, and react to these words; but it especially make me what to know how you have been swayed and molded. It is an unavoidable reality that these physical challenges and daily occurrences change how we all look and deal with life on a daily basis. They are all too real. It not only impacts other people’s lives and attitudes, but it affects those directly closes to us. It absolutely affects whom and what we are; as we can see concrete results taking hold in all areas of our daily lives. We are an exceptionally aware species, who have a six sense. We can tell when others hold back what they truly feel, when one interjects with a conniving control, and begins to assign rules and regulations of what we are and aren’t truly capable of doing and becoming.

Why, you may be asking yourself? Well, because people will be people. People well look at us and judge us thought their own prism of experience. They will look at us through their own light and transparency. They will intellectually think they know better or more then us. That is why it is so very important to analyze our own thinking, our own attitudes, and our inner most thoughts.

There are so many old fashion words, and terminologies that are still used in today’s culture and society that are derogatory, and show a critical or disrespectful, disregard for us as people. Even though out-mouted, these words are still used. They seek to limit us as individuals and our dignity as human beings. They take away all our pride to move forward. Some of these ideas and concepts sell a forced notion and an obligation of what we are and are not allowed to become. In every aspect of our lives, there is an entire set of rules and regulations written and unwritten which the general public believes and leans towards. It is imperative that each of us, in our own way, search our souls at our core root, and make a conscious choice to be visible, and communicate these feelings within our community.
The more active we communicate and share, the more confident we become. We gain a self-worth to reach out more to others, as we inspire and encourage. As we do this, we summon up hope for all. We help others to get out of themselves, as we aspire others to think new thoughts, and reach for new goals. Moreover, the more we engage freely in all activities, the more empower we become. Not just to help ourselves, but to help each other as, we breakdown the walls of isolation, separation, and exclusion. We easily and effortlessly introduce new ideas and ways to look and maneuver through life.

The more active and willing we become, the more engaged and committed we become to give back and make a difference in our community, in the things we say, and the friendships we have entrust, the more we summon up and invoke a new belief system. We initiate insightful meaning in things we share dialogue about. We have a chance to make a difference, open up new channels, and make new passages towards the way people talk, think about us, and use words from there heart. By being mindful, sympathetic, and conscientious, people will learn to treat us with dignity, and respect. By doing so, we will be passing it forward. We will be making a difference, and hopefully, change people’s attitudes. Perhaps one day they won’t utter words of contempt. Life will takes on a whole new meaning as we become a vital voice, and source contributing to everyone in our community.

In closing, I think the most important thing to remember is to retain ultimate decision making over our own lives. That is the only way we can thrive and survive in this world. That is the only way we can make a true difference. It is the main ingredient to live up to our fullest potential. This way, we will demonstrate to all those around us that our word and desires mean something and have merit. We will exhibit to the world that we want our thoughts, and our desires to be taken seriously. We will show everyone that these wishes are to be reached for and to be fulfilled. And that no one can take them away from us. No one!

By demonstrating our determination and staying steadfast to our thoughts and beliefs, we will teach the world and the people around us that our word means something and warrants respect, admiration, credibility, and is to be valued with high-regard. If we hold fast to these truths at our core the impossible will become possible!

A BOY who doctors said would not live beyond his first birthday has defied the odds to become his family’s pride and joy.
Little Alex Lever is now looking forward to celebrating his fourth birthday and friends and family says he lights up all their lives.
Trapped in a body that won’t respond to his brain, the three-year-old has been described by doctors as having the mental age of a 10-month-old baby.
But Alex’s loving family believes there is ‘much more going on’ than people realise and say he has made remarkable progress in the past year and a half.
They are trying to raise £2,000, with the support of Weymouth’s community, for specialist sensory equipment and a standing frame to improve the quality of his life.
Dad Joe Lever, 28, of Wyke Regis said: “The equipment would make a huge difference to Alex.
“The most important thing is a vibrating mattress, which connects to a stereo and moves in time to the music, and a standing frame that would allow Alex to use his legs.
“He’s incredibly active but he can’t support himself and he’s getting too big for us to hold him all the time.
“The standing frame would be a precursor to a walking frame. I’m confident he’s going to walk some day.”
He added: “All the equipment and disability aids are very expensive so we’re grateful to Ian Young and the other fundraisers like Portland firefighters who are making this possible.”
Alex, who lives with mum Danielle Williams and her family in Weymouth’s Park District, has spastic quadriplegic cerebral palsy and myoclonic epilepsy with seizure.
When he was born he registered ‘only slightly above stillborn’ and Joe said: “We’re very lucky to have him, he very nearly died.”
Alex currently takes four different medications a day and cannot walk or crawl but he never stops moving and needs to consume 2,000 calories a day.
He does not like anything put in his mouth so has to be fed a special high-calorie diet through a nose tube.
Alex can only make a few basic sounds and requires 24-hour care.
For the past two years, two care workers from Julia’s House children’s hospice have visited weekly to provide four hours of respite care.
Since September Alex has attended Wyvern School for disabled children two mornings a week, where he loves the soft room, sensory room and will soon start sessions in the hydro therapy pool.
Grandma Sylvia Williams, 54, said: “He loves his baths so we think he’ll really enjoy it.
“One hip hasn’t formed properly and is non-weight bearing, so it’s safe to say Alex will never walk unaided.
“The doctors said Alex wasn’t going to last a year and said he was a vegetable - but he’s certainly no vegetable, he’s quite happy.
“All the staff at Wyvern say Alex knows he’s loved.”
Joe works split shifts as assistant steward at the Wyke Regis Working Men's Club and spends five afternoons a week with Alex.
Alex is also visited regularly by his other grandparents, who live in Preston, Weymouth.
Grandma Jan Lever, 62, said: “He’s got a terrific sense of humour – he hits you and laughs.
“He’s definitely making progress.”
On May Bank Holiday Monday a charity football match, disco and raffle were held to raise money for Alex’s specialist equipment.
Organised by Ian Young and sponsored by local businessman Stuart Barnes, the event at Williams Avenue pitch, Weymouth included a barbecue, and bouncy castle.
A disco was then held at the Wyke Regis Working Mens Club on Portland Road, Weymouth. More than £1,000 was raised on the day.
Anybody with donations or fundraising ideas for Alex’s cause is asked to contact the club on 01305 786867

Did you ever happen to wonder or think twice about the basic, essential facts and the fundamental truths of men and women with Cerebral Palsy? Have you ever raised the question within yourself about our feelings on romantic identities, and why it is that we as challenged individuals cannot be looked at equally, talked to on an equal basis, or understood completely? We are dismissed because our disability is thought to make us stupid. Do you think it is always us? This area of dissection, which is readily unspoken about, is most difficult for the largest part to swallow. It is hard to believe, to the average person’s eye; that there indeed are some very capable people out there with disabilities such as myself.

Unfortunately, people find it to dark an area to discuss, or talk about, let alone- cope with! It is all too easy to put on our rose color glasses and hide with a false comfort. In general, people and the world around us would rather ignore the matter at hand. They would rather turn away from the neediness and the desperateness that over-shadows disabled people’s true being. They would rather continue to believe the myths, and regard us as the “cute, innocent, naive children” forever living in this forgotten bubble, who have no desires at all!

This morose and morbid fascination with our capabilities, or to be more specific, our incapability’s in the romantic arena or lack there off is ignored. The fact that we may wish, or think of having an ordinary, healthy, friendship, or even a romantic relationship with another consenting, loving, caring, human being; much less get married, is just too disgusting, too revolting, and too sickening. It is too extreme, too challenging, and too confrontational. Moreover, it is very provocative and shocking to others and the norm.

For pretty much my entire life, I unyieldingly struggled with every bated breath I have taken. Not only was it for my own core essence and being to exist, but, it was in my chosen passion, which was of the arts… It was the desire to be able to express myself freely in a world of dance, music, and literature; which helped me to relinquish and release the bars that I wore on my leg and in my brain– also, because I did not want to be looked down upon as a typical helpless victim.

Thus, I did everything in my power to strive and thrive- I had wants, needs, and desires, and I wanted to be given the same equality and chance to express myself in the areas I loved and cherished most. I reasoned… that if other men and women of my age and generation could accomplish their goals and dreams- including having a boyfriend, then why couldn’t I! I could easily work on my inner-self- my strengths and weaknesses, to become the best person I could be. I felt that that was the healthiest way to approach my life. However, too often, others where quick to judge! Consequently time and time again I was put to the test- only to searched my soul, readjusted my thoughts, and daily re-committed myself to living that healthy “normal life,” in a society, which continued to tell me “I couldn’t!”

My self-worth came from the gentle, romantic way in which I cared for myself. It was the way that I dressed, the time that I took to primp and fuss, and the way I took that extra moment to look the very best that I could for each given situation. It was the way that I nourished my body, my mind, and the way I acted. It was the honest and pro-active, empowering way I conducted myself. It was the way I looked up to those eloquent people who were positive, happy and joyfully succeeding in life. I took the good, positive; things I liked, and let go of all the rest; as I continued to develop a sense of my own inner-being. I began to see how others were attracted to me. They began to look beyond my left side hemiplegia, Cerebral Palsy, and learning disability. They began to see me for me. Thus, I embraced myself and my life even more than I already had. My romantic sense came from all this innate wisdom, insight, willingness to change, and the knowledge I read.

Yes, I have been challenged, ridiculed, stood up on dates, however, disputed all the intense examinations, crewl remarks, I have risen despite the harshest of securitization. I have found a man who loves me for me, and I have happily been married, for twenty years now. Despite my physical challenges I was able to find a love, a partner, and a life of my own, despite what the world thought of me.

By Christopher Black
Apr 30, 2009

NEW ORLEANS (BP)--"Little Randy can't complete the test, so I'm afraid to tell you that he is brain damaged," Randolph Schweinberg II said recalling the doctor's evaluation of a childhood IQ test he had taken.

From then on Randy's family was encouraged to treat him as mentally disabled. The doctor was right about one thing: Randy does have brain damage. He has cerebral palsy, or CP.

CP is the result of brain trauma often occurring during pregnancy or infancy. In Randy's case, the disorder resulted from a lack of oxygen during his birth. Although CP has affected his motor skills, it has left his mental faculties intact.

At New Orleans Baptist Theological Seminary, where Schweinberg is now a student, family nurse practitioner Mari Wirfs at the campus clinic can testify to Randy's readiness to learn.

"It's a common misperception that CP always includes mental impairment, but even with the most severe cases, there is typically no cognitive disability," Wirfs said. "With Randy, there is absolutely no cognitive deficiency."

As a child, Randy underwent four operations on each leg in an attempt to give him the ability to walk. The surgeries, however, left him with fused ankles and limited mobility outside his wheelchair.

Growing up in a non-Christian family in Florida, Randy's struggles drove him to rebel against authority and those who tried to deny him the same choices others take for granted. However, through the loving concern of a godly woman named Kendall Brown, God changed all that.

"My youth was a tough time for me," Randy said. "If I hadn't turned to God when I did, I probably wouldn't be alive today."

Living in a world where he is often labeled as mentally challenged, Randy has learned resilience, tackling Advanced Placement coursework in high school and, at Charleston Southern University, earning a bachelor of science degree in psychology in 2004.

Feeling the pull of God's call, Randy moved to New Orleans and began work on a master of divinity degree with a specialization in the psychology and counseling.

Kathy Steele, head of the seminary's psychology and counseling department, said Schweinberg "has everything he needs to be an outstanding counselor. The main struggle he faces is discrimination." Steele added that Randy has a great sense of humor. "It helps others think of him as a regular guy," she said, "and that's important -- being thought of as a regular guy."

At the seminary he experienced some challenges such as the physical layout of the grounds that made accessibility difficult for the wheelchair-bound student.

James Byrd, who works with NOBTS' facilities department, recalled the extra effort the seminary devoted to upgrading accessibility. "Randy has been a good sounding board for how we can improve our effort to make the campus accessible to all students," Byrd said. "We are always looking for ways to best incorporate the ADA guidelines for accessibility."

Another major challenge was accessibility to texts. The textbooks themselves were easily found; however, reading them proved a major challenge. One of the ways CP affects Randy is in the muscle control of his eyes, making reading a line of writing in a book very difficult. To compensate, Randy has developed extraordinary listening skills, and usually gets copies of the notes from either the professor or from fellow students.

"When Randy first arrived at the seminary he was limited in his ability to physically write exams," Steele also said. "He's overcome that, now."

In 2005 Randy was settling in for his second year at NOBTS when Hurricane Katrina hit. Like everyone on campus, he lost everything, including his $8,100 electric wheelchair. As a result, he is motoring around campus in a 10-year-old chair that is in constant need of repair.

Despite all the challenges, or maybe because of them, Randy continues working toward his master's degree. He currently is the senior counseling intern at the Bethel Colony South recovery center and halfway house for recovering addicts located near the seminary.

Mel Jones, Bethel Colony South's founder and director, holds Randy's work in high regard. "The fact that Randy has CP makes his counseling of our residents more effective. When men meet Randy, they no longer have excuses why they can't recover. He inspires people."
--30--
Christopher Black is a doctor of philosophy student at New Orleans Baptist Theological Seminary.

AN Ilminster student's dreams of playing football with his friends may soon become a reality as he undergoes surgery to help him walk correctly.
Harry Rutter, aged 16, of Blackdown View was born with cerebral palsy, a condition which in his case severely restricts movement in the left side of his body.
He has always been able to walk but with considerable difficulty, and doctors told him the way he moved would eventually lead to curvature of the spine.
In February, he had an operation on his leg at Musgrove Park Hospital, Taunton, to prevent this. The surgery left him temporarily relying on a wheelchair and mobility scooter.
There is more surgery for the student of Holyrood School, Chard, on Thursday but he remains defiant.
Harry, a huge football fan, said: "I'm not treated any differently at school by my friends anyway, but it would be brilliant to be able to play football with them instead of just watching from the sidelines.
"I'm studying registered materials, cooking, humanities and PE, but it is a pain because I leave school in the afternoons and quite often miss the double lessons.
"I'm not really allowed to play football on any of the teams, because of health and safety, which is annoying."
Harry is a firm supporter of the Ilminster Youth Football team and rarely misses a match.
In 2008, his support for them was recognised when he was presented with an award at the Rotary Club of Ilminster's Young People of the Year awards.
He is also a staunch Yeovil Town FC fan. Last week, player-manager Terry Skiverton presented him with a signed club shirt and a copy of Hendford To Huish Park.
The gifts were a "good luck" gesture from the club for Harry's future operations.
He said: "I wasn't expecting that presentation at all and it was a bit embarrassing, but a nice surprise all the same.
"I joked about selling the gifts on eBay and making a bit of cash, but really the shirt will be going in a frame to put on my wall."
Harry's drive to persist with his treatment stepped up a gear at the end of the Ilminster Youth team's season, when the referee allowed him to play for the final ten minutes. Remembering this, he is unable to keep the smile from his face.
He said: "I got hacked a lot. Being able to play, even if only for ten minutes, gave me a taste of what I really want to do; I will get through these operations so I can play again."
Harry will soon take his final exams at school and is attending Holyrood's end-of-year ceremony on Friday.
Instead of staying on at the sixth form, he has secured a place at Somerset College of Arts and Technology in Taunton.
His mother Cindy, who used to run the Crown Inn in Ilminster, said: "I took Harry up to Taunton but he did the interview and everything else on his own, he doesn't let anything get in his way.
"I think college will help with his independence but he is very self-motivated anyway, it was his decision to have the surgery to correct his walking.
"We don't really have a timescale as to when the operations will be finished, as they depend upon the success of each other and cerebral palsy is so unpredictable. But our doctor says he is pleased with the status of Harry's leg and things look good at the moment.
"A lot of people know him in Ilminster and they know how determined he is. He's certainly not shy and is able to make friends easily.
"We get a lot of support from friends and family and I would especially like to thank the Ilminster Youth team, Yeovil Town and Holyrood School, who have gone out on a limb for Harry. Also Jeff Perks, who arranged the half-time presentation.
"This has taken its toll on the family but I think 2010 will be our year."

Local Gazette

MY daughter is handicapped and has cerebral palsy and is a resident in Blenheim House, Thornaby. I live in Marton, she is still classed as a Middlesbrough resident.

We have recently been informed that Dial a Ride is combining with social care and the service will not operate from 3.30pm on Saturday until Monday morning. There seems to have been no recognition for the regular users of the weekend services.
What about the churchgoers and those who want to socialise on a Saturday evening?

My daughter receives £49.10 mobility allowance. How far will that go when the taxi fare is £16 return?

This is blatant discrimination for disabled people.

Publish Date: Sunday,26 April, 2009, at 12:27 PM Doha Time

Dr Shaarani: ‘Two to three years of age is the time to show an affected child to a surgeon

By Bonnie JamesSurgical interventions improve the quality of life of children with cerebral palsy, Hamad Medical Corporation’s consultant orthopaedic surgeon Dr Mohamed Shaarani said yesterday.“Surgery enables many wheelchair-bound children to be transferred to walkers and those who are crippled to get on to wheelchairs,” he explained to Gulf Times on the sidelines of the first cerebral palsy symposium in Qatar.

Children with cerebral palsy have spasticity (stiff or rigid muscles with exaggerated, deep tendon reflexes, for example, a knee-jerk reflex), which can interfere with walking, movement, or speech.“We elongate some muscles and cut some others to make them loose and allow movement and flexibility,” pointed out Dr Shaarani, also a consultant paediatric orthopaedic.

Between two to three years of age is the ideal time to show an affected child for the first time to a surgeon, he added.In a presentation about dental problems in cerebral palsy, Primary Healthcare Department’s senior consultant Dr Mutaz Ahmed observed that incidence of dental decay is higher in this group, mainly due to poor oral hygiene.“Dental caries, gum disease, malocclusion, enamel defects, increased incidence of dental trauma, drooling, and grinding of teeth are among the main problems,” he explained.The incidence of gum disease is three times more among those with cerebral palsy than in the general population. The affected group also have a higher rate of dental enamel defects.“The increased risk for dental trauma can be attributed to problems with balance and muscle weakness in legs,” Dr Ahmed pointed out.Giving sedation, including general anaesthesia, is a very important option when doing dental procedures on an individual with cerebral palsy, as it may otherwise be difficult to control the patient.Highlighting the significance of maintaining proper dental hygiene in those with cerebral palsy the senior consultant suggested that parents should be instructed by dentists in this regard.“Cerebral palsy patients should be seen by a dentist every six months,” Dr Ahmed recommended while observing that electric toothbrush can be very useful for them.

Radiology, seizure disorders, growth and nutrition, medical management of spasticity, roles of physiotherapy, occupational therapy, orthotic, speech therapy and dietician, and education were the other topics of presentations at the symposium.

It was 1976, a day like all others. I was 25 years old, walking out of a beige and brown stucco building from a meeting that just ended with California Department of Rehabilitation. What was different was that I had had just about all I could handle! I was infuriated, humiliated, and dishonored. As I walked out the door of the office, and took the elevator to the main level, step by step the anger grew inside of me. I felt as though I had just been whipped and tortured.
I walked to my car, opened my car door, and began to cry hysterically. I was hurt, marred, and very wounded. I was just told that I would not be able to carry out my life the way I desired. Somebody else in power was trying to impose their idea of what a “normal” life or a person with a disability should be.

I was told that I could not go to college like other “normal young adults.” I was conveniently labeled mentally retarded for a second time in my life, and my dreams of becoming a dance and recreation therapist were shattered. My dreams of learning the things I never learned in 12 years of grade school felt like they were being stripped away for good. My chance to live a life, like everyone else, and to be looked at with dignity and respect were immediately being crushed, trodden over, and violently subdued.

All I wanted was to be able to live my life like all people. All I wanted was to be accepted in this world, and society, and live a productive life; with purpose and meaning in the areas I knew best. All I wanted was a chance to move forth, to learn, and to better myself, and the conditions I was all too familiar with. I wanted to succeed and make something of myself. I did not want to fritter my life away in front of the television set becoming a vegetable of the state.
I had much, much higher goals and expectations of myself. I had far more dignity and pride than they were willing to toss me. And, what’s more, is that I had far more tenacity and courage then they could ever muster! They did not know who they were dealing with. Know body knew who Karen Lynn Hershkowitz was.

I wanted to do more. I was open, resilient, and receptive to learn. I was willing to do what ever it took. I wanted to properly be able to construct and write a clear, clean, concise, put together sentence without any help from others. Not so far fetched in this 21st century, although for the 20th century, which I was born, and raised; it was an enormous obstacle! They were not going to allow me to learn. They, the (State Department of Rehabilitation) were not going to allow “this” disabled person, with Cerebral Palsy and a learning disability to go to college. It’s very true that we are conveniently discriminated against and still are subtly.

I was not going to put up with this indirect abuse. Nor was I going to sit back on my laurels. Something snapped. Something deep within my soul told me to not give up or give in. I got in my car, drove home and began to plot. I could not sit still on this matter. Thus, the next day, I was writing letter after letter and making phone call after phone call to file a lawsuit to solve this issue at hand. What I did not know is that I would have to fight this battle completely alone. I did not know how long this would take, or how much agony I would have to go through. But I knew that I would be fighting for an entire people.

This act that I was about to take, had never been done before. It had never been undertaken so boldly, and never had such a person such as myself; from the disabled community, chosen to break out of what “the experts believed she could do!” So bold the act was, it never been dreamed of before. No one in the disabled community before me ever had the nerve, guts, courage, spirit, and bravery to challenge the system, and the established stereotypes, and all their beliefs, verbal battering, and contempt’s for our desires, efforts, and needs, were held to be meaningless.

I would not sit in an office, and surrender control of my life and being; to a perfect stranger, who sat higher on the totem pole, without any understanding of the price I had to pay. They had their degree, they had their title, and they were determined not to allow me to have either. They could handle more severe versions of my disability because those people they thought could be controlled. There was no way, heaven on earth that I was going to be controlled, manipulated and forbidden to carry out my plans or destiny in the manor I saw fit. It would take years, but I won. I got the degree, and now, twenty-eight years later, I am proudly working towards a B.A.

By Caroline Gough
A CHILD with a rare medical condition is responding well to an alternative therapy.
Tristan Forsdyke has had several sessions of Bowen Technique.

The 18-month-old has had hemiplegia since he was just five weeks old. It is a neurological condition which weakens one side of the body and affects one child in a thousand.

It is sometimes described as a form of cerebral palsy and the effects are similar to those of a stroke but it does not shorten a sufferer's life. Tristan wears a splint on his arm and an insole in his shoe to help with the weakness on the right side.

His mum Tess Forsdyke said: "He really enjoys the sessions.

"I've tried the technique myself as I wanted to know what he was experiencing.

"We have seen a real improvement in him since he started the sessions and he is making more attempts to use his weaker arm now."

The Bowen Technique is a gentle, deeply relaxing, physical therapy that frees the body to attain its natural balance and healing, addressing the body as a whole.

It often extends beyond the presenting symptom to the healing of underlying causes of illnesses.

In a session, the patient lies on a bed, wearing loosely fitting clothes and relaxes.

Tristan just sits in a chair as he is so small.

The therapists – Judith Watson and Norman Ogden – apply a series of movements along the spine and at specific points throughout the body. It is the deeply relaxed state which seems to act on the body's self-governing nervous system to enable it to regain its own natural balance. Mrs Watson said: "A very gentle technique for children was developed by Howard Plummer around 15 years ago involving moves over soft tissue – a slight variation of Bowen Technique.

"Mr Plummer has had fantastic results with children with cerebral palsy, autism and ADHD and dyspraxia.

"In some ways, Tristan has been a case study for us, his right arm and hand were badly affected and have improved.

"It's very effective for people who have had a stroke as the body is designed to heal itself."

The technique uses a high degree of physical manipulation and works with babies, children and the elderly.

Bowen is effective in treating a host of ailments including shoulder problems, RSI, back pain, sports injuries, migraine, respiratory problems, fatigue and stress.

"Clients frequently comment on how good they feel and how quickly they relax – as if they had just had a full body massage," said Mrs Watson.

Mrs Forsdyke organised an aquacise fund-raiser in December which raised £175 for the charity Hemihelp, which aims to promote the rights and well being of children with hemiplegia by providing information and support and by raising general awareness of the condition. Smart Therapies is in St Hilda's Business Centre, The Ropery, Whitby is run by Judith with Norman Ogden.

Further details are available at www.smart-therapies.co.uk.

For further information on hemiplegia visit www.hemihelp.org.uk

By JOANNA DESIRA
joanna.desira@eveninggazette.co.uk

DESPITE a lifelong struggle with cerebral palsy, Daniel Johns’ positive attitude brings happiness to all who meet him.


Even after enduring two nine-hour operations within months of each other, Daniel pulled through with a grin on his face.

His constant cheerfulness has earned the 16-year-old admiration from friends and colleagues at Kilton Thorpe Special School, in Brotton.

And he has now been recognised for the joy he inspires with the Princess Diana Award for overcoming adversity.

Daniel lives in Loftus with his mum Lynn, 43, dad Peter, a Sky engineer, also 43, sister Lacey, 13, and brothers Mitchell, 13, and Louie, four.

Lynn said: “We were over the moon when we heard. His school put him in for it and it was written in his book when he came home that he was going to receive it. I rang all my friends and family!”

Daniel was born 24 weeks early and suffered bleeding in his brain, and had to fight for his life.

“He was born so early we always thought there might be a chance he would have cerebral palsy because he had bled. He fought so hard to live we weren’t bothered what he was like and it wasn’t a shock to us,” said Lynn.

Daniel was registered as blind from an early age and the Johns family have had to make adaptations to their house to make room for his wheelchair.

As Daniel got older he started to develop scoliosis in his upper body and doctors needed to operate to repair it.

“He had slight curvature in his spine for a while,” said Lynn.

“We always knew it was there from him being young but over time it was getting worse. It got to the point where he was in so much discomfort he had to lie down.

“The specialist said he had to have a major operation because if he didn’t, over time he would just curl up that much all his organs would squash.”

He had a nine-hour operation in January 2007, but had to go back for a second in the following April.

“It was horrendous,” said Lynn. “It was such a long operation and in the second he got an infection.

“He has recuperated quite well, amazingly - we don’t know how, after everything they did to him.

“He is so much better, but now they want to do his hip, because it is dislocated. His upper body is straight but he is sweeping to one side.”

Lynn added: Daniel has such a lovely personality, he can’t speak, but he smiles and everybody who meets him thinks they don’t have it bad at all.

“He doesn’t understand that he has won the Princess Diana Award and that’s a crying shame.”

Teacher Suzanne Laver, who nominated Daniel, said: “He is the most happy and content young man, he brings joy into everybody’s life, he is no bother at all.”


Daniel received his award, in front of his family and friends, from Mike Dillon, the director of adult and children’s services for Redcar and Cleveland, during a special assembly on Friday.

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Mar 9, 2009 by Alexandra Shimo
China is not normally considered a world leader in surgical advances, but according to a number of its doctors (and the Canadian patients they’ve treated), it has leapfrogged ahead in stem cell treatments. A growing number of people are travelling to China for a $30,000 experimental treatment: stem cell injections. Most, like New Brunswicker Jean Christophe Haas, 40, decide to go because they have a debilitating illness and there isn’t much that Western medicine can do for them.

Haas has Machado-Joseph disease (MJD), a terminal neuromuscular disease that affects the body in a similar way to Parkinson’s, paralyzing it gradually. Although he was diagnosed 20 years ago, it took some years for the symptoms to become noticeable. At first, only his sense of balance and his coordination were affected. Then his speech began to suffer and he started slurring his words. In 2004, he had to stop work as an army mechanic because his motor skills were no longer up to par and, in the past couple of years, he started seeing double. His family felt an overwhelming sense of panic, especially because Haas’s mother had the same disease, and his grandmother died of it. His desperation was compounded by the sense that Canadian doctors had given up on him completely; one told him there was nothing to do but to accept his fate of an early death, says his wife, Cherie Haas. “It’s awful for a young man with a family to go in and hear that. It’s heartbreaking.”


Ms. Haas searched the Web and found stories of other MJD patients who seemed to have been helped by stem cell therapy at various Chinese hospitals. Many of these good news stories are posted on personal blogs or on the websites of the clinics offering the treatments. There are thousands of these testimonials, suggesting that hundreds of people go every year, says Timothy Caulfield, Canada Research Chair in Health Law and Policy at the University of Alberta, who has published studies on this issue.

Advertising on the Internet, these Chinese medical centres promise to treat a surprisingly extensive range of diseases and conditions, including ALS, autism, brain injuries, cerebral palsy, epilepsy, multiple sclerosis, Parkinson’s, spinal muscular atrophy, septo-optic dysplasia (which can cause seeing difficulties, blindness and mental retardation), spinal cord injuries and stroke. Foreigners are a major source of funds for the clinics. Some doctors like Dr. Huang Hongyun, a neuroscientist at Beijing Xishan Hospital, have treated many patients from outside China, including some from Canada, and he has published a number of papers in Chinese medical journals tracking patients pre- and post-procedure. And yet some North American doctors are critical of how the data was compiled, and skeptical of the treatments on offer.

Once Jean Haas decided to go, he told his plans to Guy Rouleau, a neurologist at Centre Hospitalier de l’Université de Montréal, who said there were slight risks of complications, and that it would probably be a waste of money. But otherwise he didn’t try to dissuade him. Raising the money for the trip was easier than expected: much of the town of Oromocto, N.B., pitched in to raise the $30,000, with neighbours’ kids shovelling driveways to help out, and the military and community organizations hosting breakfasts and fundraisers. In April 2007, he and his wife travelled to Shenzhen, China, and stayed a little more than a month. During that time, Haas had six injections of stem cells into his spine, and an intense program of physiotherapy, exercise, massage and acupuncture. The results were immediate, he says—his balance improved just a few hours after the first procedure. Back in Canada, his neurologist confirmed that Haas had indeed gotten better: he had about 10 to 15 per cent more movement, according to Rouleau, who examined him before and after the trip. It’s difficult to speculate why this occurred, but Rouleau believes the intense physiotherapy was the primary cause.

When the couple returned from China, they wrote about their experience on the Web. Word got around, and soon hundreds of people were calling them, Cherie says. A couple whose husband had a similar neurodegenerative disease even drove from Quebec to see them, and the man subsequently decided to make the stem cell trip. Another couple flew in from Taber, Alta., and decided to go to China after seeing the home videos of Haas’s progress. Those gains were partly due to the attitude of Chinese doctors, Cherie believes. They would tell Haas to push himself to his limit and even try to “retrain his brain,” she explains. “We saw miracles while we were over there. We put the word out because I know this works.”

Even if patients experience gains, it’s important to determine whether they are from the treatment, the exercise program or a more positive frame of mind. Any advances could be merely the placebo effect, as people often feel better after being treated, even if the procedure hasn’t worked and the gains won’t last, explains John Steeves, a professor at the college for interdisciplinary studies at the University of British Columbia who specializes in spinal cord injuries. Finding out whether any treatment really works requires clinical trials, and although Dr. Huang has published the results of his trials in Chinese medical journals, this data does not conform to international standards of medical analysis. Indeed, Steeves believes Huang deliberately flouts these standards to help his bottom line. “Dr. Huang has no interest doing a valid clinical trial because if it doesn’t give him good results, his income would dry up immediately,” he says from his Vancouver office.

Patients, like Haas, who seem to have been helped by stem cell treatments, are often eager to share their stories. They may become advocates for the Chinese medical centres; Haas’s story is publicized on the website of the company that organized his medical tourism trip. By contrast, it’s more difficult to find people who haven’t gotten better, or are worse after spending $30,000 on an experimental procedure. This might be because they feel duped, or because the Chinese stem cell treatment emphasizes empowerment—a “you can do it attitude.” Those who can’t “do it,” who go through the rigorous training program and end up no better off, may feel unlucky, cheated, or they may take the lack of success personally and feel that they have somehow failed.

Missouri resident Jeff Carneal, 38, doesn’t feel like a failure, but having spent so much money, he is frustrated and disappointed. He lost the use of his legs when he fell off a stepladder while fixing his father’s barn. He has spent the past six years working with different doctors trying to learn to walk again, even flying to Quito, Ecuador, for an experimental operation (nerves were removed from his legs and grafted onto his spinal cord, which cost a lot, but didn’t really help). When a Maclean’s reporter first met Carneal at the Beijing Xishan Hospital after stem cell treatment, he was enthusiastic and believed the operation he’d had a couple of weeks earlier had alleviated some of the shearing leg pain he’d felt ever since his accident. But when contacted a few weeks after he returned to the United States, he was more downbeat, and said the operation hadn’t really made any difference.

Negative outcomes aren’t widely reported, but they are more common than the Chinese hospitals would have you think, says James Guest, a professor of neurological surgery at the University of Miami. He visited Huang in Beijing in the summer of 2004 to sample and test the fluid being injected into foreign patients. The results were inconclusive, he says. Following this, he went a step further, and examined spinal cord injury patients pre- and post-treatment in China. The results, published in 2006 in the journal Neurorehabilitation and Neural Repair, make clear the difference between what the doctors see and what patients want to believe. Of the seven, six thought they recovered some limb movement, although in most cases the physicians measured very little difference.

A few had concrete gains: a 19-year-old had chronic, burning back pain that eased enough for the patient to stop taking painkillers. Another patient had fewer muscle spasms after the procedure and could angle his left hand a little more, although he phoned Guest six months later to say the surgery had not made any permanent difference. On the downside, there were also post-treatment complications: a 22-year-old contracted meningitis, pneumonia and gastrointestinal bleeding, which were managed with heavy medications, and another had a fever and confusion along with a drug rash. Guest is critical of the Chinese stem cell treatments: he believes some doctors are “motivated by profits” and “they place patients at risk for therapies which have minimal effect.”

Eight months after travelling to China, Haas was struggling with the symptoms of Machado-Joseph disease. He was having problems walking and was falling again. The family still had some money left over from their fundraisers, so they decided to make another trip to China, and took out a small loan. In March 2008, he and his wife went to China, this time to Qingdao in eastern China—the first hospital wouldn’t accept them since it was now prioritizing Chinese nationals over foreigners, explains Cherie. After four weeks of treatment, Haas had more energy and there were slight improvements in his balance and speech, he says. However, the gains lasted all of two months and today he’s just as bad as before the first trip. Nevertheless, despite the costs, and the dubious rates of success, the family would like to return again if they could afford it. “I would go tomorrow if we could,” Cherie says. “It gave people hope.”

By JANE E. BRODY
Published: March 9, 2009
Hyperbaric oxygen therapy was long called a treatment in search of diseases. But in recent years, laboratory and clinical studies have found more than a dozen serious diseases for which it is considered a valuable — and sometimes life-saving — treatment.

Although the administration of pure oxygen in a high-pressure chamber has been around as a therapy for more than 300 years, it is only now beginning to reach its potential, according to a report in the November issue of the journal Emergency Medicine.

At the same time, hyperbaric oxygen therapy has joined the ranks of unproven remedies for many conditions, especially incurable ones like cerebral palsy and autism. The use of the therapy in these situations often borders on quackery that exploits desperate patients and parents. One family I know spent $40,000 in a futile attempt to reverse their child’s cerebral palsy; another spent more than that and even bought a home hyperbaric unit to treat their child’s autism.

The Credibility Factor

The Undersea and Hyperbaric Medical Society, the professional organization in this field, recognizes 13 conditions for which it is legitimate to place patients in high-pressure chambers that force pure oxygen into their blood and tissues. Eleven of those conditions have been approved by Medicare for reimbursement, indicating that solid evidence supports these uses of hyperbaric oxygen.

The list includes decompression sickness (“the bends”), necrotizing fasciitis (flesh-eating disease), carbon monoxide poisoning, gas gangrene, the bone infection osteomyelitis, nonhealing wounds and delayed radiation injury to bone and soft tissue.

But nowhere in the list are cerebral palsy, autism, multiple sclerosis, stroke, macular degeneration, spinal cord injury, sports injuries, heart attack, postpolio syndrome, Lyme disease, migraine, cirrhosis, myasthenia gravis, fibromyalgia or chronic fatigue syndrome — among the dozens of conditions that independent clinics claim to treat with hyperbaric oxygen. Not to mention the claims of celebrities like Michael Jackson, who used it in the hope that it will keep him alive to 150, and Keanu Reeves, who used it for insomnia.

“Credibility is a huge problem,” said Richard E. Clarke, director of the Baromedical Research Foundation, which sponsors scientifically sound research. “We are all tarred by the same brush.”

“Although hyperbaric oxygen therapy has been suggested as beneficial in several other conditions, unfortunately, clinically valid evidence is virtually nonexistent,” he said. “This is relatively expensive and time-consuming therapy, and it makes sense to ask whether it is cost-effective and whether the benefits are long-lasting.”

Even for conditions approved by Medicare, supporting evidence is often contradictory. “A persistent criticism of hyperbaric medicine regards the lack of large-scale, multicenter, randomized studies for several of the primary indications,” noted Dr. Chris Maples and Dr. Moss Mendelson of Eastern Virginia Medical School in Norfolk, in the Emergency Medicine report. “Data are conflicting, particularly on carbon monoxide poisoning, crush injuries and some soft tissue infections. Some trials demonstrate benefit while others show no difference.”

Problems and Risks

One problem in conducting good studies is the difficulty of randomly assigning patients into treatment and control groups in a way that “blinds” them to the group they are in, Dr. Charles S. Graffeo, a specialist in hyperbaric medicine at the Eastern Virginia Medical School, said in an interview. Another problem is finding enough patients with the same condition, which is crucial in gathering statistically significant data.

Dr. Graffeo said there was “a good theoretical basis and some promising evidence that hyperbaric oxygen therapy could help treat clots on the retina, acute frostbite, recluse spider bites and thermal burns.”

“But there are just not enough scientific studies,” he said. “Conducting controlled clinical trials of hyperbaric oxygen is a bit more challenging than testing drugs.”

He cautioned patients to steer clear of independent hyperbaric centers owned by a single doctor or small medical group that is not affiliated with a major hospital or medical school. Commenting on claims commonly made by such clinics, he said: “No legitimate organization would condone treating cerebral palsy with hyperbaric oxygen therapy. I haven’t seen anything that is even potentially promising to support such a use. If I had a C.P. child, I wouldn’t even consider it.”

Furthermore, the therapy is not without risks, though most are mild and usually short-lived and there has been no documented fatality in more than 75 years of use in North America. The risks include ear and sinus pain, low blood sugar, nearsightedness that can last for weeks, and anxiety attacks resulting from confinement in the chamber. Also, the therapy is clearly dangerous for some patients, including those with a collapsed lung and those receiving chemotherapy with cisplatinum or adriamycin. The therapy may also be hazardous for pregnant women and people with poorly controlled asthma or active cancer, among others.

Established Benefits

Hyperbaric oxygen can be life-saving for patients with the bends, like divers who have surfaced too quickly. For those suffering from severe carbon monoxide poisoning, the most rigorous study so far found that three hyperbaric treatments decreased cognitive damage later. Traumas like crush injuries and thermal burns that deprive tissues of adequate oxygen also benefit from high-oxygen therapy, as do life-threatening infections called necrotizing fasciitis, if the condition is treated in its early stages, the experts in Virginia reported. The therapy may also be useful for sepsis, a potentially life-threatening bacterial infection in the blood and tissues.

Dr. Graffeo said the therapy was useful in treating diabetic foot ulcers and bone infections. It is beneficial for patients whose tissues were damaged by radiation therapy — cancer patients, for example, who can develop oxygen-deficient wounds that do not heal well. Hyperbaric oxygen promotes the release of growth hormone and helps to form blood vessels in irradiated tissue, he said.

A study published last September in the International Journal of Radiation Oncology, Biology, Physics found hyperbaric oxygen helpful for patients with radiation proctitis, which can cause bleeding, rectal ulcers and loss of bowel control. Though the costly treatment can involve as many as 40 two-hour sessions, “the net effect is reversal of the problem in the majority of patients, which in the end is cost-saving and greatly improves quality of life,” said Mr. Clarke, whose foundation sponsored the study.

Oxygen therapy is being tested in patients with new diagnoses of head or neck cancer to increase the tumor’s sensitivity to radiation treatments, Mr. Clarke said. Future studies will test benefits to patients with cancers of the larynx, skin and gynecological organs.

“The most important question to answer, in addition to cost-effectiveness,” he said, “is whether the therapeutic benefit lasts and clearly improves patients’ quality of life.”

The recent death of Ivan Cameron from cerebral palsy has raised the profile of this devastating condition.

Health Editor Barry Nelson visits a charity providing vital support for North-East children.

IN a mobile classroom on the edge of a County Durham town something remarkable is happening.

Kneeling on a floor pad and with arms outstretched, a teacher trained at the world-famous Peto Institute, in Budapest, is working with a severely disabled child. By gently guiding the child’s movements, encouraging him to stretch, reach out and grasp toys, the Hungarian “conductor” is able to gradually increase his mobility and flexibility.

Throughout the hour-long session, the conductor also talks and sings to the child, who responds with gurgles and cries of pleasure. But it is not all fun. From time to time the child grimaces as he struggles to complete a movement that an able-bodied youngster would find child’s play.

But for a youngster with cerebral palsy, just grasping a toy rattle and lifting it into the air takes a huge, unimaginable effort.

Every day children from all over the North-East are brought by their parents to the Heel & Toe charity on the outskirts of Spennymoor, so conductive education therapist Zsuzsanna Luteran can work her magic. Remarkably, the charity offers such therapy free of charge to families in the North-East who need it. With access to NHS physiotherapists strictly rationed, this has proved to be a lifeline for desperate families. In every case the 34 children who have regular conductive education sessions at Heel & Toe have benefited and made steady progress.
Now the charity is urgently appealing to the public to help them expand their services.

Zsuzsanna is an exponent of conductive education, a now internationally famous method of improving motor skills of children with cerebral palsy, spina bifida and other motor disorders. Developed at the Peto Institute more than 40 years ago, conductive education is now widely used by therapists across the world.
The institute’s website explains that conductive education is not a cure but “a method of exercises and education… performed intensively, five hours per day, five days per week, in small groups”.

ZSUZSANNA is delighted that families who use Heel & Toe keep coming back for more. “I am very happy that all of the parents of the children I teach have kept on coming back since October,” she says.

In every child she works with, Zsuzsanna says there has been progress. “I have seen positive changes in all of them, especially the younger ones,” she says.
Zsuzsanna says one of her clients, a ten-month-old baby, was like “a big piece of stone” when he was first brought to the centre. “At first he was unable to move, but now he can roll, creep and even sit up. His mum said she never expected him to do that.”

Each lesson is a mixture of group exercises and intensive, one-to-one sessions. “People sometimes think conductors are just physiotherapists, but it is much more,” says Zsuzsanna. “It covers every aspect of the person. It is everything – moving, speaking, eating, building up confidence – and they have to do this at home as well.”

A regular at Heel & Toe is twoyear- old Max, whose mother Leeann Harker comes from Crook. The very fact Max is alive is something of a miracle. “I was supposed to have twins in March,” says Leeann, “but they came very prematurely in November.
Michael died after four days and Max suffered from a massive bleed.”
After 100 days in hospital and a series of operations, she was able to bring Max home. Diagnosed with a severe form of cerebral palsy, experts warned her that he would probably be in a vegetative state. But while Max finds it impossible to perform most of the tasks a “normal” two-year-old could do, Leeann says he is making progress and can still communicate.

“He knows what he wants and he knows how to tell me. If he is hungry he sticks his tongue out. He can be very cheeky,” she says.

The conductive education sessions have been “absolutely fantastic”, according to Leeann. “He used to make little fists and hold them tight. He can now open his hands more easily.

He also tries to creep now and he can almost sit up on his own. We would be lost without this place. I just hope they raise all the money they need.”
Centre manager Doug Long says the charity is “quite unique” in the North-East in offering free conductive education. However, Heel & Toe is now “at saturation level” and needs to appoint a second conductor.

Recently the charity was awarded £9,027 of National Lottery funds to spend on specialist equipment.

That’s a big help, but the charity needs to expand.
“We need to raise £86,000 a year at the moment, but we have big plans for the future. By the end of 2012 we plan to spend £250,000,” says Doug.
The recent tragic death of Conservative leader David Cameron’s six-year-old son Ivan – who had a severe form of cerebral palsy – has raised the profile of the condition among the general public. But Doug says the charity needs to do more.
Later this month Heel & Toe is holding its first spring charity ball at The Swallow Three Tuns Hotel, in Durham City. A black tie charity night, subtitled Black Ties, Big Hearts, the event will include a fourcourse meal, guest speaker The Northern Echo columnist, Mike Amos, live music from a North-East band, followed by a disco.

Tickets – at £40 per person – are available by table or individually.
“Raising money has got more difficult for charities recently and we really need people to get behind us,”
says Doug. “Hopefully our black tie dinner will become an annual event.
We certainly could do with the money,” he laughs.

■ The charity event is on Saturday, March 21. For tickets ring 0844-335-0512 or 01388- 890775 or email info@heeland toe.org.uk

Wow the past 48 hours have been a very painful one. It all started Saturday morning, I went down to my gym in the basement and decided to do a leg workout. After I was done I felt really good. About an hour later though muscle spasms started to make their ugly presence known. It hurt so bad, I wanted to scream my guts out, my Mom and Dad spent most of the day Saturday rubbing hot ointments on my muscles to help with pain.

I was also doped up on a muscle relaxer, normally I don’t like them very much because they making you loopy. But I was more than happy to be knocked out cold. And I ate lots of food with salt and drank a ton of water, as I always do. But the salt, came from some very not so good sources for the body.

Man, I have blogged on here in awhile. A lot is going on inside of my mind and heart. What I will say though, is this here I want to reach out to our brave Soldiers who have given their bodies to make our country a better, safe place. I’m going to be doing my Re-search, a lot of it will probably be in hospitals. As I’ve said before “The Emotional Struggle” is everyones story in some form or another.
And I think its my duty and calling in life to bridge the gap between hope and despair. When hope and despair clash, hope has a way of the the pain submit to a grip, like a submission hold if you well. The more I wake up everyday, the more I realize how fragile life is. Life is something the God of the universe created and we need to honor and respect it.

I simply ask that you all keep me in your thoughts and prayers, this month has just started and I plan on it being better than the last.
Peace be with you all.
-Brandon

Recently I was sent an email from a lady about specialist children's orthopedic shoes instead of braces/walking standing frame, and I wanted to share it with you all as you might find it useful:

Ladies and Gentlemen,

I would like to inform you of a unique collection of attractive orthopedic footwear created to meet the needs of children affected by Cerebral Palsy. Designed by an orthopedic doctor the Komfo Active shoes can be used as an alternative to braces. They are the best option for children unable to wear orthotics. The Memo collection has been designed as diagnostic and corrective footwear for children. Please visit our web site www.ablegaitor.com for more information.
Another unique product we offer is the “walking standing frame” which allows people with SCI up to C5 level, Spina Bifida, MS and Cerebral Palsy walk independently. Please click on the link to watch a video. http://walkwithparalysis.blogspot.com/
Our mission is to empower people with paralysis to be upright and to walk independently, improving their physical and mental health.
Please feel free to contact us with any questions or comments.

Sincerely,
Marina Grohmann
(888) 858-5289 toll free
www.ablegaitor.com

Comedian and Extras actress Francesca Martinez refuses to be defined or limited by the mild cerebral palsy that left her 'wobbly'

Last December, I guested on the topical news Radio 4 show Broadcasting House. One of the stories up for debate was David Cameron's Christmas card, which featured a photo of his family, including his young son Ivan, who had cerebral palsy. There was talk of the Tory leader using Ivan as a political tool to make him seem more caring and sympathetic.

I felt compelled to point out that Ivan was his son and therefore should be in a family photo. I imagined that had Mr Cameron left Ivan out of this family scene, he would have been chastised for keeping him invisible. He couldn't win. I thought the only fair question was whether any of his children should have appeared and if it was right of him to place them in the media spotlight. As usual, someone's disability had made them an issue first and a human being second.

That's the huge secret about disability – anyone with experience of it knows that a disabled person is just a person they love. A disability is like hair colour, eye colour, height or weight, just another arbitrary feature that those around you cease to focus on and which, ultimately, becomes normality.

I was born with mild cerebral palsy: according to my mother, if I was like a newborn foal. I like to think that this charming comparison is because of their wobbly legs and slim frame. I like to call myself… wobbly. I admit that the doctor did not use that word as he informed my parents of my condition when I was a somewhat floppy two-year-old in my mother's arms, but I can't stand those depressing terms that someone deemed appropriate to burden a human being with for the rest of their lives.

No wonder people are still so nervous about disability, and I can only conclude that names for them are hand-picked from a tombola of words most likely to induce fear and panic. Just stick your hand in and pull one out. Syndrome. Disorder. Cerebral. Palsy. Disease. Spina. Bifida. The rest is easy. Take two words, mix them together, apply to one human being and, hey presto, you've got a ready-made freak. Labels are powerful tools that shape attitudes and tell us much about how the things they are describing are viewed. I have spent my life trying to extricate myself from the label that was plastered all over me at birth.

My parents were young when I wobbled into their world, and full of love for their first child. After hospital negligence during my birth, I did not breathe for seven minutes, resulting in starvation of oxygen to the brain. After I was resuscitated, my mum said that the only sign that "something was up" was the repeated reflex tests that were done on me before I left.

When, aged two, I was finally diagnosed, my parents did not seem fazed by the revelation. Sometimes I've asked them if they were shocked or upset at my diagnosis, but all they say is: "You were Francesca and completely normal to us." This attitude shaped my childhood and allowed me to be happy and confident, totally unaware of difference.

At school, I was popular and naughty, a real tomboy who had her first boyfriend aged five. My brother came along and, to him, I really am normal, and when his friends asked him why his big sister "talked funny", he'd reply with a puzzled: "What do you mean?"

At secondary school I lost all my confidence and, for the first time, became aware of my difference. Getting a main part in the TV show Grange Hill was a dream come true. Yet, despite five happy years on it, I hit 18 feeling isolated and insecure.
Thankfully, my father Alex, who is a playwright and novelist, wrote a film script for me, as I was being offered so few acting parts. I loved it, except for the fact he'd made my character a stand-up comedian, the most terrifying job in the world. I dragged myself to a comedy workshop in the name of research and, 18 months later, was on stage at the Edinburgh Festival winning an award for best new comic.
That moment was 10 years ago. Stand-up comedy has changed my life. Standing on stage and being honest about who I am allowed me to embrace my so-called imperfections and, amazingly, allowed the audience to get past any initial fears or nerves and see me as a person. Humour is a great way to challenge attitudes on difference and normality.

Being a wobbly comedian has meant I've had extra press and attention, but I've also come up against fear and prejudice. In 2002, the Perrier judges were told not to come and see my Edinburgh show because I was just a "novelty act", a BBC TV stand-up show would not book me because they thought I would make the audience "nervous",and I wasn't allowed on a BBC radio show because of my "funny" voice! Luckily I've been supported by other comedians such as Frank Skinner and Ricky Gervais, who have either given me parts or had me on their shows.

The media does not represent society truthfully and keeps "difference" largely invisible, and this means it is not seen as a normal part of life. Anyone can become disabled - the fact is, we will always be people first, with things we can and can't do second. I think everyone in life has their own "disability" - something that challenges them - whether it is visible or not.
Francesca Martinez is performing in aid of War On Want on March 5, 2009, at Shepherds Bush Empire, www.waronwant.org/comedygig

by Insciences

EVANSTON, Ill. --- Two compounds developed by Northwestern University chemists have been shown to be effective in pre-clinical trials in protecting against cerebral palsy, a condition caused by neurodegeneration that affects body movement and muscle coordination.“The results were just stunning, absolutely amazing,” said Richard B. Silverman, John Evans Professor of Chemistry in the Weinberg College of Arts and Sciences at Northwestern, who led the drug development effort. “There was a remarkable difference between animals treated with a small dose of one of our compounds and those that were not.”The findings, which are published online by the journal Annals of Neurology, suggest that a preventive strategy for cerebral palsy may be feasible for humans in the future. (The paper also will appear in the journal’s February issue, in print the week of March 2.)

Richard Silverman None of the fetuses born to animals treated with the two compounds died; more than half of those born to untreated animals died. Eighty-three percent of animals treated with one of the compounds were born normal, with no cerebral palsy characteristics. Sixty-nine percent of animals treated with the other compound were born normal. There was no sign of toxicity in the treated animals, and their blood pressure was normal. Cerebral palsy is caused by an injury to the brain before, during or shortly after birth, although it typically is not diagnosed until after the age of one. Approximately 750,000 children and adults in the United States have a form of cerebral palsy, with the majority having been born with the condition.

The new compounds Silverman and his team developed inhibit an enzyme found in brain cells that produces nitric oxide, thus lowering nitric oxide levels. At normal levels, nitric oxide acts as a neurotransmitter and is important to neuronal functioning, but at high levels it has been shown to damage brain tissue. An overabundance of nitric oxide is believed to play a role in cerebral palsy.After a lengthy drug development process, Silverman went to his collaborator Sidhartha Tan, M.D., a neonatologist from NorthShore University HealthSystem, to test the two best compounds on Tan’s cerebral palsy animal model. A diminished supply of oxygen (hypoxia) from mother to fetus causes an increase in nitric oxide levels in the brain, which leads to brain damage and newborns with cerebral palsy characteristics. Silverman and Tan wanted to see if they could prevent brain damage in the fetuses by administering one of the compounds to the mother before the hypoxic event. They expected some degree of success but were surprised by how effective the treatment was.

The researchers attribute the protection from cerebral palsy to the decrease in the brain enzyme and the nitric oxide that is produced.“We still have to bring the phenomenon to humans, which would be very exciting,” said Tan, who has been investigating the impact of nitric oxide on neuronal damage. “There is such a dire need. If we could safely give the drug early to mothers in at-risk situations, we could prevent the fetal brain injury that results in cerebral palsy.”

In developing the potential drugs, Silverman and his team were able to produce something that pharmaceutical companies so far have not: highly selective compounds that inhibit the enzyme found in brain cells that produces nitric oxide but that do not affect similar nitric oxide-producing enzymes found in endothelial and macrophage cells. Endothelial cells regulate blood pressure, and macrophage cells play an important role in the immune system. Reducing their production of nitric oxide would have deleterious effects on an animal, such as increasing blood pressure or compromising the immune system.“The challenge was to lower only the nitric oxide in the brain and not in the other cells where the nitric oxide is very important,” said Silverman, a member of Northwestern’s Center for Drug Discovery and Chemical Biology. “Early compounds developed by drug companies to target the brain enzyme actually bound to all three nitric oxide enzymes,” he said. “This made me think that the three enzymes must be very similar in structure. We decided to look for differences away from the normal binding site to get selectivity for only the brain enzyme.”This approach paid off. Silverman and his team started with a molecule that showed good selectivity of the brain enzyme over the macrophage enzyme but with no selectivity over the endothelial enzyme.

The researchers then made modifications to the molecule and built a library of 185 different compounds that could be tested for the selectivity they wanted. They found 10 good ones. More modifications were made until they had a few compounds that were very selective and very potent for the brain enzyme.Silverman then started collaborating with Thomas Poulos, Chancellor’s Professor of Molecular Biology and Biochemistry and a crystallographer from University of California, Irvine, who had been working on the structure of the neuronal brain enzyme. Silverman sent him several potent and selective compounds, and Poulos produced crystal structures showing each compound bound to the brain enzyme.“Thanks to the talents of Tom and his associate Huiying Li we could, for the first time, see visually why these compounds were selective and also see the difference between them,” said Silverman.Haitao Ji, a postdoctoral fellow who is an expert in structure-based design, joined Silverman’s team. Ji took the crystal structures of their molecules bound to the enzyme and, using computer modeling, designed new structures with even better properties.These compounds were more potent and much more selective than earlier ones. Poulos produced crystal structures of the new compounds.

These are the compounds that Tan tested on his cerebral palsy animal model with such promising results, as reported by the research team in the Annals of Neurology paper. “This is a great example of a multi-institutional collaboration that could not have been done without each of the parts -- we each contributed something different,” said Silverman. “Science is going in that direction these days.”The researchers caution that taking the compounds to human clinical trials is a lengthy and complicated process. Silverman says they next plan to make the compounds even more potent, selective and bioavailable and then envision partnering with a company that would want to develop the drugs further.

The work was supported by the National Institutes of Health and the Robert A. Welch Foundation.Silverman, Tan, Poulos, Li and Ji (lead author) are all authors of the paper, titled “Selective Neuronal Nitric Oxide Synthase Inhibitors and the Prevention of Cerebral Palsy.” Other authors are Jotaro Igarashi, from the University of California, Irvine; Matthew Derrick, M.D., from NorthShore University HealthSystem (formerly Evanston Northwestern Healthcare); Pavel Martasek, M.D., and Linda J. Roman, from the University of Texas Health Science Center; and Jeannette Vasquez-Vivar, from the Medical College of Wisconsin.

The Times
February 26, 2009

In an extract from their book, David Cameron's biographers explain the impact of Ivan
Francis Elliott and James Hanning

Ivan Cameron was born in Queen Charlotte's Hospital in London on Monday, April 8, 2002. The birth was by a Caesarean section, made necessary at the last minute because Ivan was the wrong way round in the womb. Otherwise it was a normal delivery of an apparently healthy baby boy. It was a joyful event but even then a period of mixed emotions: in nearby Hammersmith Hospital at the same time, David Cameron's godfather Tim Rathbone, Ian Cameron's schoolfriend and a significant personal and political inspiration, was having tests for cancer. He visited Samantha in hospital but was to die some weeks later. “The fact that he was dying while my son was being born seemed to have some kind of symbolism. It made his birth all the more poignant and moving,” Cameron later told a friend.

Although Ivan was their first child, they quickly sensed that something was wrong. At Queen Charlotte's he seemed to have occasional spasms. Otherwise he seemed a very sleepy child and Samantha struggled with breast-feeding. But the health visitor paying the routine postnatal call to Ginge Manor, where mother and baby had gone after leaving Queen Charlotte's, saw no reason to be alarmed.

Within a week of his birth it was clear that Ivan, still very sleepy, was losing weight. Sometimes his hand would spring open in a series of small but repetitive impulses. As first-time parents, David and Samantha Cameron had nothing to compare their son's behaviour to and, reassured by the advice of the health visitor, showed off their son to Dominic and Tif Loehnis that weekend.

But, as Ivan entered his second week, the jerks were becoming more pronounced. Annabel Astor had become sufficiently concerned to drive her daughter - on her birthday - and grandson to the local GP.

The doctor's initial diagnosis was that the newborn was suffering from a kidney malfunction. He directed them to the accident and emergency department of the John Radcliffe Hospital in Oxford. It was here that the baby had his first major seizure in front of a doctor.
The nature of Ivan's condition was beginning to be shockingly apparent.

David Cameron, joining his wife at the hospital, shared her distress as their tiny child was subjected to 48 hours of blood tests, brain scans and lumbar punctures. Of all the tests, the one that was picking up the most identifiable evidence of Ivan's problem was the electroencephalogram (EEG). The EEG records brainwave patterns from electrical signals emitted by the brain. This showed the high-voltage “spikes” that occur in epilepsy, but they were followed by very little activity.

After one last confirming EEG, Mike Pike, a paediatrician, took the couple into a side room to talk. With ominous purposefulness, he placed a box of Kleenex beside them. He told them that this was very serious, that the pattern he had seen was consistent with “a very poor outcome and severe disability”. Ivan, he said, would have “very serious difficulties”. Cameron, struggling to take the gravity of the diagnosis on board, said: “When you say he's got serious difficulties, does that mean he's going to have trouble doing his maths, or does that mean he's never going to be able to walk and talk?” Pike said simply: “I'm afraid it means he probably won't walk or talk.” Within a few days they had a name for Ivan's condition: Ohtahara syndrome.

The National Institute of Neurological Disorders and Stroke (NINDS) provides the following definition: “a neurological disorder characterised by seizures ... most commonly caused by metabolic disorders or structural damage in the brain, although the cause or causes in many cases can't be determined”. Most infants “show significant underdevelopment of part or all of the cerebral hemispheres. The course of Ohtahara syndrome is severely progressive. Seizures become more frequent, accompanied by physical and mental retardation. Some children will die in infancy; others will survive but be profoundly handicapped.” Unsure whether Ivan would live for weeks or years, Cameron ensured that his son was christened at the earliest opportunity.
Cameron has said that the news hit him “like a freight train”. A friend observes that the couple entered “a very, very grim and difficult period” Emotionally, they had to overcome the discrepancy between the elation they had felt at the birth of their first child and the reality of what lay ahead. “You are depressed for a while because you are grieving for the difference between your hopes and the reality,” he has said.

There were immediate practical issues to address, the most pressing of which was how best to manage his condition. Ivan went through further tests at Great Ormond Street and Queen Mary's hospitals in London as doctors experimented with cocktails of drugs. David and Samantha Cameron, taking it in turns to sleep beside their son on hospital floors, were given a brutal lesson in the reality of life as the parent of a disabled child. After his initial shock Cameron has described how he began to surface. “There was a moment driving home from hospital and just thinking ‘We are going to get through this. If we can't do a good job and look after him, then we have failed'.” Initially the Camerons tried to look after Ivan themselves, without the support of their local authority's social services department. For a year the couple struggled with the situation largely on their own, although they had help from a special-needs-trained nurse during the day. Three and a half months after Ivan was born, Samantha had returned to work - as planned - for two days a week, and after five months she was back doing nine-day fortnights. It was a difficult decision.

On the one hand she worried inconsolably about Ivan's minute-to-minute care, but, on the other, her career was important to her and she had always intended to carry on working.
Childcare was shared between them. Journalists spotted Cameron bottle-feeding his son in Westminster that summer and cited it as evidence of the changing nature of the Tory party, not knowing the fullness of that truth. The young Tory MP also took Ivan to meetings at Carlton, where he remained a consultant. Former colleagues could hardly fail to notice the difference in him. At Edwina Paine's engagement party, one said he seemed a “different man ... he seemed much less frivolous”. Another senior colleague said: “He'd walk around with that baby in a basket, he'd come to every meeting.” Where previously Cameron had appeared “arrogant”, “this was a real leveller”.

Giles Andreae has said that Ivan's handicap had given Cameron “more humility”. Cameron has admitted as much himself. “Having a severely disabled son does bring you into contact with a lot of other elements of life. You do spend a lot of time in hospitals, you meet a lot of other parents and families in the same situation. It's an eye-opener.” At one point, Ivan's blood pressure shot up and he had to be rushed to the renal unit at Great Ormond Street. Cameron found that hospital visit in particular a strange experience. “He was struck by the fact that there were all these kids there who had been on dialysis for months, being incredibly courageous with these awful, awful problems,” says a friend. “I think it made him realise that there are other people in similar situations. On one occasion he was there all night, and at about 4am he was reading Jack and Jill to someone else's kids, and then had to go to Parliament early the next day to carry on with life as normal.”

© Francis Elliott and James Hanning 2007. Extracted from Cameron: The Rise of the New Conservative (Fourth Estate, £18.99) Available from Times BooksFirst for £17.09, free p&p. 0870 1608080, timesonline.co.uk/booksfirst. The Times, on behalf of the authors and the publisher, has made a donation to Mencap and St Mary's Hospital

- Health News, Health & Wellbeing - The Independent

The Camerons make appeal for carers and charities that helped their eldest child
By Amol Rajan

Hours after their six-year-old son Ivan died on Wednesday morning, David and Samantha Cameron asked well-wishers not to send them flowers. Instead, the couple said, donations should be sent to one of the many institutions which had helped Ivan, who suffered from a combination of severe epilepsy and cerebral palsy known as Ohtahara syndrome, throughout his brief and difficult life.
If it were possible for good to emerge from the death of their eldest child, the Camerons felt, it would be that these care centres, which have been pillars of hope in the lives of thousands of parents, received the recognition they deserve.
Among them are two hospices linked by an unlikely meeting 14 years ago. Sister Frances Dominica, the British nurse who in 1982 opened the world's first children's hospice, Helen House, in Oxfordshire, was invited for coffee by Kathryn Turner, a 55-year-old administrator working at the React children's charity.
Inspired by Helen House, and galvanised by her meeting with Sister Frances, Ms Turner set about trying to create a similar institution in Hampton, Middlesex. It took her 10 years to raise the funds – £3m – with donations ranging from 10p to £100,000.
Eventually, in 2005, the Shooting Star Children's Hospice was founded. At the time it was one of only eight such hospices in the world; today, it is an international standard-bearer. The Camerons, who spend weekends in the Tory leader's constituency of Witney, in Oxfordshire, used Helen House extensively when away from London. But during the week, they relied even more heavily on the outreach services – meaning nursing visits to the family home in Kensington – provided by Shooting Star.

Open 365 days a year, the hospice offers several types of service, entirely free of charge, to parents of children with disabilities. Aside from outreach staff and day care, it provides "end of life care" to support parents in the final stages of children's lives.

As well as family rooms, children's bedrooms and therapy rooms designed to provide relaxation, Shooting Star has an arts and crafts room, a sensory room with soft furnishings and music, outdoor play areas and a peaceful garden for grieving parents. Its hydrotherapy pool and spa is hugely popular because it gives children freedom they otherwise don't have.

"David and Samantha would have outreach nurses visit them quite regularly," said Dalton Leong, a former Barclay's banker who now works full-time as chief executive at Shooting Star. He added: "They also came to us regularly on our short break scheme, where they would drop Ivan and his brother and sister off with us while they recharge their batteries. Sometimes this would be for a few hours; at other times it would be for a few days."

Mr Cameron has said repeatedly that his political outlook has been conditioned hugely by his experience of hospices, which he as Prime Minister would seek to give greater prominence. With growing demand – the paucity of such facilities means they are hugely over-subscribed – comes growing needs too. The centre, which receives only 8 per cent of its funding from the Department of Health, costs £8,000 per day to run. Its annual fundraising target rose last year, from £2.5m to £3m. With a third of its funding coming from local community donations, Britain's recession is going to make hitting that target difficult this year.

Campaigning from some well-known patrons has helped. These include Sir Cliff Richard, Sir Trevor McDonald, Joan Collins, Richard E Grant, Vince Cable and Laurence Llewelyn-Bowen, the last of whom donated £500,000 he earned from a Valentine's Day edition of Who Wants To Be A Millionaire? But few people realise the fragility of these centres' finances, the Spandau Ballet singer Tony Hadley told The Independent yesterday. Hadley has played in several fundraising concerts free of charge for the hospice.

"I was so upset by what happened to Ivan, so upset, as was my wife and everyone we know," he said. "Before I got involved with Shooting Star, I had no idea they received hardly any help from the Government. These places are so fundamental to their communities, and so much good comes of them, that it's just pure scandalous that they struggle for cash. Nothing will bring Ivan back, but if Shooting Star can keep going that will be a wonderful legacy for him to leave."
Wellwishers should sent donations to Mencap, the Friends of St Mary's Hospital or one of three other charities – the Friends of Jack Tizard School; Helen and Douglas House, in Twickenham, and the Shooting Stars House, in Hampton, Middlesex.

Cameron's Son Dies

Tragedy of disabled Ivan, six
TORY leader David Cameron’s disabled son Ivan has died, it was announced today.

FAMILY MAN: David Cameron with wife Samantha, disabled son Ivan, daughter Nancy and little Arthur on a walk near his Oxfordshire home in 2007. Ivan died early today

A Conservative Party spokesman said: ‘‘It is with great sadness that David and Samantha Cameron must confirm the death of their six-year-old son Ivan.

‘‘Ivan, who suffered from cerebral palsy and severe epilepsy, was taken ill overnight and died at St Mary’s Hospital, Paddington, early this morning.

‘‘David and Samantha would ask that their privacy is respected at this terribly difficult time.’’

Ivan was the Camerons’ first child, born at Queen Charlotte’s Hospital in London on April 8, 2002. He suffered his first seizure within weeks and was in and out of hospitals all of his life.