By Gerry J. Gilmore American Forces Press Service
Innovative therapies that have assisted previously comatose patients regain consciousness may be incorporated on a greater scale to treat troops diagnosed with traumatic brain injuries, a brain injury expert said Mar. 23.

Dr. Philip A. DeFina, chief executive and scientific officer at the not-for-profit International Brain Research Foundation Inc., in Edison, N.J., said that, over the past four years, electronic brain stimulation, oxygen-induction, drugs and other therapies were used to bring 43 people, including five injured soldiers, out of minimally-conscious or vegetative states. DeFina, an Army veteran, is also the chief consultant for the brain injury program at the Kessler Institute for Rehabilitation, a for-profit hospital in West Orange, N.J. He was one of several civilian and military guest speakers who attended March 23’s Reserve Officers Association-sponsored seminar in Washington, D.C., on mental health care. Brain injuries can occur because of blunt-force trauma to the head, explosions, and penetrative wounds, DeFina explained. Such injuries, he said, cause oxygen starvation in the brain, from which damage ensues. “There are a number of different types of (brain) injuries that we’ve been dealing with -- all of which have been responding to the protocols,” he said. “What we’re doing proactively, with our consortium of doctors and scientists,” he said, is “to electrically and chemically stimulate the brain.

” Other treatments employed, he said, include drugs and oxygen-inducing regimes, such as hyperbaric oxygen therapy, where the brain is inundated with oxygen. The goal, he said, is to balance the electrical and chemical activity in the brain. “Once we can stabilize electrical-chemical activity, we can optimize what the brain’s capability is at that point,” he said. Doctors can employ functional imagery techniques to examine the state of a person’s neural markers, which are the chemical and electrical patterns within the brain, he said. “We can then use that to guide us for treatment and to predict recovery,” he said. The prognosis for recovery for the five injured soldiers was “close to zero,” he said, before they underwent the treatments at the Kessler institute.

“The brain heals,” DeFina said, noting there are “different levels of improvement” among patients who’d formerly been minimally conscious and/or unresponsive. After treatment, some people “wake up and some people can communicate,” DeFina said. Other people, he said, may be able to perform simple tasks or return to work. “So, we have different levels of the ability to recover,” he said. And, applying such innovative therapies to patients with mild to moderate forms of traumatic brain injury, he said, produces “dramatic results.” Congress has set aside about $6.4 million in Fiscal Year 2009 appropriations funding, DeFina said, so that the foundation can conduct continued research and development of the new therapies in cooperation with military health care organizations. “We’re in the process of accessing those funds,” he said. The foundation has developed close relationships with several Defense Department healthcare components, DeFina said, including the Defense Centers of Excellence for Psychological Health and Traumatic Brain Injury, headed by Army Brig. Gen. (Dr.) Loree K. Sutton. “Within the last year, we’ve had probably about 30 military doctors from the Army and Marines come visit Kessler to look at the program, including General Sutton,” DeFina said. “We’ve briefed them, we’ve given them formal presentations on all the science, and then showed them the patients that are there. “We’ve gotten a really good response from that,” he said. Many innovative therapies, DeFina said, have been used in a “stand-alone” manner to successfully treat patients with brain injuries. Yet, using those therapies in combination “is even more powerful,” he said.

A new door / venture opened for me early last week to take part in the Disability Advisory Group for Stockton on Tees, when this opportunity came up I jumped at the chance because I could see a chance for me to be able to help people through my own experiences and gain an insight and further experience from other disabled people from within the group, I also let it be said that I didn't know that Stockton had a disability advisory group in the first instance. All in all this has been my ethos thoughout my life to push the boundaries and this is the main structure of our website also, so you can see why I signed up as it is exactly what I want too do to be able to speak out in public and raise the awareness.

What is the Advisory Group

The activities of the group will be co-ordinated by Stockton-on-Tees Borough Council’s Diversity Team, who will be available to offer support to the group and its members.

Network Meetings

The whole group meets up on a regular basis to make sure that everyone up to date with what is happening around disability issues and to provide information about things that are planned for the future.

Working with Council Officers

Members of the group will be asked to use their expertise as users of council services to work closely with officers to advise them about the difficulties they have and how we can improve access. This will involve members of the group having meeting with the officers who look after different services or visiting sites or buildings with them to help us build in the needs of disabled people.


I will keep you upto date with how I get on within the group

By Judy Winter; 258 pages. Subtitle: Raising the Bar of Expectations




Winter combines her talents for journalism and parenting in a book that is part inspiration, part how-to, and wholly optimistic about your family's survival as you take on the challenge of raising a child with special needs. It's a particularly useful guide to those just starting out on the journey of dealing with special needs, and hearing from everybody that it's too hard and their life is over and their situation is tragic. Breakthrough Parenting offers a much-needed antidote to all that gloom and doom.


Pros
Takes an upbeat approach to the challenging task of special-needs parenting. Gives parents of children newly diagnosed a voice of experience to guide them, Full of specific tips for a variety of situations and relationships. Includes inspirational stories of individuals with disabilities succeeding. Offers listings of resources with every chapter

Cons
More useful to those just starting out than those who've been at it a while. May seem too upbeat if you're really struggling. Book was published in 2006, so some resources may not be up to date

Description
Part One: Welcome to Breakthrough Parenting for Children With Special Needs

Chapter 1: The Perfect-Baby Dream
Chapter 2: First You Cry
Chapter 3: No Labels, Yes Hope
Part Two: Guidelines for the Preschool Through College Years
Chapter 4: The Pre-K and Elementary Years
Chapter 5: Middle School, Junior High, and High School
Chapter 6: Advocating for Techniques and Programs That Work
Part Three: Focusing on the Family
Chapter 7: Embracing a New Definition of Family and Planning for the Future
Chapter 8: Preserving Your Marriage, Caring for Yourself, and Surviving the Death of a Child
Chapter 9: Meeting the Needs of Siblings
Part Four: Honoring Special Needs Excellence
Chapter 10: Honoring Special Needs Excellence
A Conversation With Timothy P. Shriver, Ph.D.
A Conversation With Dana Reeve

Guide Review - Book Review: Breakthrough Parenting for Children With Special Needs
Learning that a child has special needs can be traumatic for parents -- in no small part, because professionals tend to present it as the End of the World. They'd do a much better service by passing on this book, which acknowledges the grief that must be processed but also provides an action plan for getting on with your life and your child's.

Each section of the book starts off with a "Bill of Rights," including one for children and young adults; parents; siblings; and professionals. Among the rights Winter bestows on parents are the right to "Grieve the loss of a child with special needs" and "Ask tough questions, including Why? -- but also to "Celebrate your child's birth," "Move about freely in society with your child," and "Be proud of your child's accomplishments." Since our children are so often looked upon as nothing but tragic, I appreciated the balance.

Illustrating the points on hoping for the best for your child are stories of individuals with special needs and their families breaking expectations and living their lives. Also helpful are lists of resources at the end of each chapter that can send you off in pursuit of information for your particular situation.

If you've been a special-needs parent for a while and found your way to advocacy and empowerment and favorite resources of your own, the tips and pep talks here may be less useful than if you'd found them in the early days. Still, as your child grows and changes and moves on through school, there are always new suggestions that can help. And it may inspire you to think about how you can pass on your experience to parents starting out with trepidation, in a support group, a blog, or even a book of your own.

The Bottom Line
By Kim Aumann and Angie Hart; 223 pages. Subtitle: Resilient Therapy™ for Parents and Professionals.
What makes a child resilient? How can we help our challenged children find a happy life, and maybe grab a little bit of that for ourselves? Resilient Therapy™ seeks to identify the elements that lead to resiliency in children and adults, and teach parents how to pass those on. For those stuck in despair, it's a cheerful helping hand; but if you've been adjusting to your child's challenges all along, it may serve as nothing more than an encouraging pat on the back.

Pros
A positive look at parenting children with complex special needs. Offers a useful way to think about resilience, and foster it. Also takes into account parents' needs for resilience, and helps them get some. Permission given to skip whatever parts of the book are not useful to you
Exercises throughout help you apply the advice given

Cons
Like the critics mentioned at the end of the book, I wouldn't call this "therapy". Much of this you may already know -- though it's never bad to have a reminder. If your child is very challenging or you feel very challenged, this may be easier read than done

Introduction
Chapter 1: Basics
Chapter 2: Belonging
Chapter 3: Learning
Chapter 4: Coping
Chapter 5: Core Self
Chapter 6: Let's Get Real - It's Tough But So Are You

Guide Review - Book Review: Helping Children With Complex Needs Bounce Back
Here's a nice surprise I got while reading Helping Children With Complex Needs Bounce Back: Though I'd never heard of "Resilient Therapy" before picking up this book, it turns out I've been doing it all along. Whether that means this therapy is really just a collection of common-sense wisdom about pulling yourself up by your bootstraps, or that I'm intuitively brilliant at special-needs parenting, I can't say -- I'd tend toward the latter, don't you know, but I rather suspect the former is more like it.

If you've found a way to be happy, and raise happy kids, despite significant challenges, this book may feel like a confirmation of everything you've ever figured out, and that's got to feel good. You may even pick up a few more tips and ideas along the way. The book is probably more useful, though, for parents who know they have to pull themselves out of basic survival mode but don't know how to do it. The authors are cheerful and friendly, the text is easy to read and structured so that you can easily skip over parts that don't interest, and the advice is solid and helpful. There are exercises to help you think through how the suggestions will work in your family, and encouraging quotes from families who have put them into practice.

Though the title says it's about helping children, the book puts at least as much emphasis on helping parents learn how to bounce back. That seems right, in a "put your oxygen mask on first so you can put your child's on" in a sort of way. But also, I suspect that many parents of children with special needs marvel at how much more resilient their kids are than they themselves feel. Since your child's unlikely to explain it all for you, this book steps in.

We are a new printing design business, based in Newcastle Upon Tyne; we are hoping to offer you a very quick and smooth service.

We design things such as business cards, celebration cards, flyers, posters, invitation cards and much, much, more at very reasonable prices as you can check out on our price list page; which has just been updated.

Find out more here

My name is Helen Convery, I’m 35 years old and I have a disability called Athetoid Cerebral Palsy (dyskinetic), which causes unwanted movements in all my limbs.
This doesn’t stop me from doing the things I love such as painting and drawing. I only got back into doing my paintings and drawings again last September when my husband bought me this program called Serif Drawplus x2. I did a lot of drawing when I was a child, but I always had someone near by to clean up the mess, so when I found this program I could use without making any mess I was over the moon because I found the thing that I’d been looking for for years. This is something that I am really passionate about and enjoy doing. I have also found some sort of self belief and worth as for years I often wondered what was the point to my life apart from being with my wonderful husband Aidan.

I tried writing a book in the past, but for some reason I never managed to finish it as I thought no-one be interested in my life. But when I’m drawing I know I’m expressing myself to others without even having to say a single word and that where I get my enthusiasm from. To do my drawings I use the number pad on the keyboard as my mouse, paint brush, pencil, or whatever else I’m drawing with at the time.
As for the parachute jump its always something I’ve wanted to do; I think with being stuck in a wheelchair twenty-four hours seven day a week its just the idea of flying through the air from 13,00ft that gives me a sense of excitement and danger. I know people think I’m mad but if your going to do something crazy you may as well go the whole hog and do something totally outrageous and stupid! So, why have I chosen to do the jump to raise money for the Paralympics?

Firstly, when I was younger I use to take part in CP Sport, and if I had been given the encouragement and support from others maybe it could have been me heading towards the 2012 games as I won plenty of gold’s in my time.Secondly, I watched the paraylmpic games last year on the television and was glued to it as the alethes put their heart and soul into everything they did and you felt the pain and determination that they were going through; for the first time in 34yrs it made me feel proud to be British and disabled. So that’s why I have decided to do a parachute jump for them; it’s my way of saying I can do whatever I want and help others at the same time!

You can sponsor me at http://www.justgiving.com/helenconvery or visit my website at http://www.crazyhelen.com/ to learn more about the jump and other ways you can help.

Food garnishing is an art - one that you can master. With the help of these step by step instructions, you'll be able to make an edible butterfly to garnish your dish.





Food garnishing and thai carving instruction

Cut a slice from a green radish, but do not cut it off completely.

Cut off a second thin slice next to it. They should be attached at the base. Cut them away without separating them. These are butterfly wings.

Cut a small piece off of the base. It should be enough to flatten that edge, but the wings need to remain attached to each other. If you cut off too much, they will separate.

Make the horns.

Trace the edge on the right side of the circle (when the base is at the bottom).

Remove a sliver next to the line you just cut.

The horns are ready.

Cut a wing shape as shown.

Carve out a pattern onto the wings.

Circles can be tricky...



This is the end product. Enjoy!

A dog described as a "lifesaver" by a disabled Devon woman is being given money by a local council to help with its upkeep.

Wendy Hillings, 59, from West Yelland, near Barnstaple, suffers from a condition which leaves her skin very fragile and prone to blistering badly.

Two-year-old Edward, a golden retriever, helps her with tasks to prevent her skin from being damaged.

Devon County Council gives Mrs Hillings ÂŁ30 a week to help with his costs.

Carer pressure

Mrs Hillings' condition, dystrophic recessive epidermolysis bullosa, means that contact with many objects causes it to blister, restricting the use of her hands for everyday chores.

She also has throat problems which can lead to her being unable to breathe.

Edward has been with her since he was nine-weeks-old and has been trained to obey more than 100 commands.

They include helping her take her coat off, emptying the washing machine, retrieving money from a cash machine and fetching help if she has breathing problems.

She said he had transformed her life.

She said: "He has gone for help before if I need it.

"If I stop breathing in the middle of the night and my husband and I are both asleep, Edward's worrying my husband's pillow, saying: 'She needs help'."


She said that Edward had also taken much pressure off her husband, Peter, because he was no longer her sole carer.

She said: "If we go out, Peter's not going as my carer, he's going as my husband, and that is so important for the relationship."

Edward's work means Mrs Hilling is getting direct payments from Devon County Council to help pay for his food and toys.

The council said: "Mrs Hilling does receive direct payments for his upkeep.

"Providing money in lieu of social care services gives people like Mrs Hilling greater flexibility, choice and control over their lives, and enables them to make their own decisions about how their care is delivered."

Edward was provided by the charity Canine Partners.

The charity currently has 300 people on its waiting list for its dogs.

Watch film



Story from BBC NEWS:

20,000 severely visually impaired people will be entitled to receive the higher rate mobility component of Disability Living Allowance, James Purnell, Secretary of State for Work and Pensions has announced.

From 2011, the real help will support 20,000 severely visually impaired people with additional mobility costs, allowing them greater freedom to get out and about, either socially or to find work.

At current rates this will mean an additional payment worth ÂŁ29 a week to those who qualify (ÂŁ1,508 per year).

James Purnell said: "This additional money could make a real difference helping people to go out to find a job, for instance having the extra cash to pay for a taxi to a job interview. Whether it is assistance getting out and about socially or to find work, ultimately it will transform the lives of severely visually impaired people and their families.

"The Government has always been supportive of this change so we are delighted that we have been able to include it in our Welfare Reform Bill.

"We are fully committed to making this change happen which will make a real difference to the lives of severely visually impaired people across Great Britain."

Jonathan Shaw, Minister for Disabled People, said: "I know many severely visually impaired people have been waiting to hear this good news and will be very happy with the outcome. The Government has been working closely with the RNIB to make this possible so I'd like to especially thank them for all their support."

The Welfare Reform Bill builds on the White Paper, Raising Expectations and Increasing Support, which was published in December.

The Bill will provide the additional powers to ensure that people make use of the help made available to them and maximise their employment prospects for the future.

Well yesterday I went to James Cook Hospital for my MRI scan, and for those who don’t know me, let me tell you I hate those machines I get so jumpy because they are so noisy. Therefore to my instant relief when I was told I could have a General Anaesthetic I was happier to have one, and when I say happier I don’t mean I was over the moon believe me, because having an anaesthetic makes me sick for hours if not a couple of days, so you can imagine my apprehension facing me yesterday morning, but I thought well I have to have it done so might as well get on with it.
6.30am came and I got up and sorted waiting for my taxi to pick me up at 7.15 and off we went said bye to mum (it was like the middle of the night for us lol) anyway got to the hospital in good time and I made my way to the day unit ward only to find the door was locked and I couldn’t reach the intercom (why doesn’t that surprise me!!!! In a hospital of all places!!!)

Anyway I managed to find a member of staff who kindly took me to the main x-ray dept, I was booked in and taken through to the small ward to complete all of the paperwork and wait for the anaesthetist, who was very nice and explained everything to me, because I had a couple of questions with regard to the metal in my spine and the magnets in the MRI, my understanding was that when the scan hit the metal part it would bounce off the magnet and distort the image, if not corrupt it all together and to all intensive purposes I was right, but they said that they should be able to get enough of an image to see what’s going on before I have the artificial disc surgery.

I then waited for a couple of hours for my turn and then I was allowed to go down, I was put to sleep really quickly and for the first time in I don’t know how many years I wasn’t sick when I came round, I don’t know what he gave me but whatever it was I will be asking for it when I have my main surgery. As far as I know the scan went well and I was allowed home on the afternoon where I slept it off and tried to eat a little bit, I didn’t think green jelly could taste so nice lol but there you go!!! I now just have to wait to get the results, hope it won’t be too long.

Young man undaunted by developmental disabilities

By Pam Mellskog
2009 Longmont Times-Call

LONGMONT — Though blue jean-clad and just 20 years old, Kyle Sanchez talks and acts like a gentleman.

He criticizes rap music for lyrics that “disrespect women” and holds his mother’s hand in public if she — a 42-year-old widow disabled by multiple sclerosis — becomes unsteady on her feet.

Sanchez — who lives with her and his younger brother, Andrew — got a job last year to help pay the family’s bills. But his helpful attitude earned him more than a paycheck.

Sanchez received the Governor’s Summer Job Hunt Award from 400 nominees statewide in August. In March, he became the 2009 Direct Support Professional of the Year in Colorado — recognition bestowed by the Virginia-based American Network of Community Options and Resources, a nonprofit, national trade association.

The kudos means more given his once-desperate survivor status as a baby born 16 weeks early on May 18, 1988.

His family waited two months to touch him. Eventually, they dressed him in Cabbage Patch Doll clothing and made tiny diapers with gauze.

Dolores Sanchez, Kyle Sanchez’s maternal grandmother, put down her knitting and held up her hand to describe the situation.

“He fit in the palm of my hand. ... And there wasn’t a part of his body that wasn’t attached to something,” she said, referring to the ventilator, monitor wires, intravenous lines and feeding tube. “I didn’t know how God was going to work this miracle, because I didn’t see it happening.”

The Children’s Hospital in Denver, where Kyle Sanchez lived until age 7 months, gave him a 20 percent chance of survival and a 10 percent chance of survival without serious disability.

No one except his mother, Maria Sanchez-Trujillo, expected him to live, much less to walk or talk.

Kyle Sanchez survived and then got help from age 3 on at the Lafayette-based Imagine! center for people with developmental disabilities. In 2007, he graduated from Skyline High School in Longmont.

“But he said it had always been his dream to work,” said Heather Hine, his supervisor in Imagine!’s Out and About program.

She hired him last May to work full time last summer as an assistant in this recreation therapy program for Imagine! clients. Participants include people ages 7 to 21 living with developmental disabilities such as autism, cerebral palsy and Down syndrome.

Kyle Sanchez now works part time in Out and About’s after-school program.

Hine remembers him arriving for the interview wearing pressed slacks, a dress shirt and a tie. After he interviewed well, she offered him the job.

“You should have seen his face. It was one of shock and just sheer joy,” she said. “He kept saying �Thank you,’ and �I’m going to work so hard.’”

Kristen Erby, a career counselor with Workforce Boulder County in Longmont, applauded him for landing a competitive job.

“Nobody with disabilities wants to be put (to work) in the back of a warehouse,” she said. “He’s compassionate and a great role model to the camp participants because he’s overcome his own barriers to employment.”

For instance, Kyle Sanchez struggles to understand time. To get to work or to his desk at Life Strategies University — the St. Vrain Valley School District’s two-year life skills program in Longmont — he stands by the family’s mailbox and waits until his cell phone’s digital clock reads 7:59 a.m.

Then, he knows to head for the bus — a service with time-sensitive schedules he worked for years to understand.

His prematurity also affected his fine motor skills. Tying shoes and opening potato chip bags remain a challenge.

But Kyle Sanchez can do nothing more than take medication for the worst consequence of his early birth — a weak heart. His ticker may fail to give him the years he wants to work, start a family and enjoy his surprising life.

“The attitude for me would be, �Keep on goin’ ’til you can’t no more,’” he said.

Pam Mellskog can be reached at 303-684-5224 or pmellskog@times-call.com.

Take a break from the usual overseas holiday this summer and inspire your family with all that England has to offer!

Planning the family holidays this year could present us all with some exciting challenges. The economic downturn not only makes the working week a little more worrisome but when you do have the chance to take a break, you feel like you still need to save money.

A recent survey suggested that more than half of us will stay in the UK this year and whilst this may not initially seem like the most appealing prospect, for families with children there is a world of adventure and hidden gems to be found on English soil – and a great deal of them are free of charge!

You don’t have to opt for the traditional seaside holiday either. Stay in your local areas of Yorkshire, Durham or Cumbria for example and discover a wealth of beautiful countryside and little known attractions.

There are literally hundreds of ways to be thrifty without compromising on fun! Whether you stay for a week or just for a day you can find exciting activities, whatever the weather and whatever the budget.

The brand new �Let’s Go with the Children’ Guide books cover 14 regional areas of England and offer endless ideas on places to go and things to do with the family this summer. Your biggest problem will be deciding where to go first!

Here are a few suggestions on how to nurture your child’s hidden passions or talents, whilst ensuring the whole family has hours of fun for less this summer, whatever the weather and whatever the budget!

Yorkshire, North East & North West - Free Places to Visit...

Hexham Park 01434 652121.

Small but perfectly formed Green Flag award winning park beside stunning Hexham Abbey with play and picnic areas, boarding and BMX facilities.

Newcastle Discovery Museum 0191 232 6789 www.twmuseums.org.uk.

Discover all about life in Newcastle and Tyneside, from maritime history and world changing science and technology through to fashion through the eras and military history. The museum is bursting with interactive displats; the perfect place to learn and have fun.

National Glass Centre, Sunderland 0191 515 5555 www.nationalglasscentre.com.

Take a fascinating tour, see glass artists at work and walk across the glass roof. Children’s workshops during school holidays. The National Glass Centre promotes the art, history and science of glass in a context that is relevant to place, through a programme of exhibitions, new commissions and education that is international in its scope and vision, and fosters meaningful debate and participation between artists, audiences and educators.

Hamsterley Forest 01388 488312 www.forestry.gov.uk/hamsterleyforest.

2000 hectares of mixed woodland lying between the Wear and Tees valleys on the edge of the North Pennines Area of Outstanding Natural Beauty.Hamsterley is a delightful oasis of broadleaved and coniferous woodland, sprawling along the sides of a sheltered valley. With way marked walks, cycle routes and horse riding trails, all levels of fitness and ability are catered for.

Consett to Sunderland Railway Path 0845 113 0065 www.sustrans.org.uk.

Part of the award winning C2C route, this popular traffic free cycle route is 21 miles long using former railway lines with lots of fascinating flora, fauna and public works of art along the way. There is plenty to visit along the route. Between Stanley and Beamish you pass the intriguingly named Hell Hole Wood, managed by the Woodland Trust and part of the Great North Community Forest.

Captain Cook Birthplace Museum, Middlesborough 01642 311211 www.captcook-ne.co.uk.

Experience life below the decks and find out about the world famous navigator through interactive displays. It is housed in a purpose-built building close to the granite urn marking the site of Cook’s birthplace cottage in Stewart Park, Marton, and Middlesbrough. The museum tells the story of one of the world’s greatest navigators and mariners through themed display galleries, temporary exhibitions, associated activities and events and a lively education programme.

Wynyard Woodland Park 01740 630011 www.wynyardwoodlandpark.org.uk.

Enjoying a beautiful woodland setting, this 180 acre park has many historical features. Facilities include a visitor centre, Planetarium, observatory, cycle ways, picnic spots, sculpture trail and play area. There is a railway carriage which acts as a classroom, a Virtual Visitor Centre Project and a new sculpture trail.

Robin Hood’s Bay, Whitby www.robin-hoods-bay.co.uk Take a net and a bucket to hunt for fossils on the rocky shores between Robin Hood’s Bay and Boggle Hole. Children must be supervised. Whether you are on a day trip or a weekly holiday to Robin Hood’s Bay, in a family group, finishing the coast to coast or simply getting away from it all, there is much to indulge in and certainly something for everyone. In addition to simply soaking up the scenery and relaxing in the surroundings, let your taste buds be tickled and your creative side tempted!

Lotherton Hall Estate, Leeds 01132 813259 www.leeds.gov.uk.

Explore the stone circle within the Boundary Trail, wander through one of Europe’s largest walk-through aviaries, admire the red deer or simply run off steam in the delightful grounds. Enjoy a great day out at Lotherton Hall and Estate and explore the fine country home within extensive grounds, including a red deer park, bird garden, nature trails, café and extensive family play area.

Manor Heath Park Jungle Experience and Walled Garden 01422 365631.

The Jungle Experience at Manor Heath Park, Halifax is a tropical oasis packed with fish, quail, terrapin and butterflies as well as a collection of plants from all over the world, where visitors can enjoy the all year round tropical atmosphere. The walled garden has many traditional and modern designs of planting, and the well kept park has a children's play area, picnic tables, mature trees and well kept gardens. A must for all the family!

Cusworth Hall Museum and Park, Doncaster 01302 782342 www.doncaster.gov.uk.

Discover lots of traditional toys in the childhood room and enjoy a picnic in the grounds. Cusworth Hall, Museum and Park re-opened to the public in May 2007, after several years of extensive restoration work.The Hall and its surrounding parkland have been transformed, stunning ceiling paintings in the Italianate Chapel have been revealed and restored, after being hidden under layers of paint for 50 years.The Great Kitchen, Bake House, Still Room and Laundry are also sometimes open to the public, giving a glimpse of what life was like 'below stairs'.

Graves Park Animal Farm, Sheffield 01142 582452 www.gravesparksheffield.info.

Get close to cuddly baby animals, domestic and rare breeds. In the park take the bird and sculpture trail and check out the play area. The farm has three distinct sections, just off the Hemsworth Road Car Park is a farmyard which houses the collections small animals such as Specialist Chickens, Guinea Pigs and Rabbits, the area is tarmac and accessible for disabled people. The farmyard is also home to the main barn where there are often baby animals, including piglets and lambs which is particularly popular with families.

Old Penny Memories Museum, Bridlington 01262 608400.

Old Penny Memories is one of the biggest collection of antique slot machines in England. Visitors to the museum can actually play the slot machines with the exchange of their money into old pennies. Admission is free, so you only pay if you play. Those visitors who are just wanting to look around are welcome to. The collection of machines and memorabilia dates from Edwardian 1920s up to the swinging 60s. You can feel the atmosphere of the era with the seaside organ music playing.

Spurn Lightship, Hull www.hullcc.gov.uk.

See how the crew lived aboard the ship which guided others into Hull’s port. Built in 1927, the 'Spurn' served for almost 50 years as a navigational aid in the treacherous River Humber. Now enjoying a leisurely mooring in Hull's attractive marina, she and her knowledgeable 'crew' are prepared to receive and welcome boarders who wish to explore.

Low Barns Nature Reserve, Durham 01388 488728.

Discover acres of beautiful woods, lakes and meadows including a visitor centre and observatory. Low Barns Nature Reserve is a 50 hectare wetland site with areas of mixed woodland and grassland. The Reserve is situated on an ex-gravel extraction site, which has been managed by Durham Wildlife Trust since operations ended in 1964.Wetland features include three lakes, interconnecting streams, a number of mature ponds, and a wet pasture. The River Wear also flows through the reserve.

Bowlees Picnic Area, Teesdale 0191 383 3594 www.durham.gov.uk.

Charming spot on the River Tees from where you can explore Gibson’s Cave, Summerhill Force and Low Force. There is a Visitor Centre run by Durham Wildlife Trust over the Bowlees Beck. One of the most attractive sections of the Pennine Way is only a 15-minute walk away. This section follows the River Tees midway between Middleton and Cauldron Snout. It can be reached by crossing the Tees on the Wynch Bridge, near Low Force.

Bowes Castle, Durham 0191 269 1200 www.bowes.org.uk/castle.

Explore the vast ruins of this open-access, three-storey, 12th century keep overlooking the River Greta. The present ruins of the castle are fifty-three feet in height, the remains being of the keep, surrounded on two sides by the remains of an original inner moat. There are few remains of the original bailey wall but it is possible to climb up part of the inside of the keep itself.

Locomotion: The National Railway Museum at Shildon 01388 777999 www.locomotion.uk.com.

Open-air museum with vehicles and interactive displays to explain the life of Timothy Hackworth and the development of railways. There’s a fun packed programme of special events throughout the year. For a fabulous day out, try their exclusive package culminating in driving a steam engine. There is an Easter Fair for all the family and events through school holidays.

Brimham Rocks, Harrogate 01423 780688 www.brimhamrocks.co.uk.

Take sturdy shoes to explore these spectacular rock formations including the Dancing Bear and Druid’s Writing Desk. Tracker packs available for over 5s. The curious rock formations at Brimham in Nidderdale are scattered over some 50 acres on Brimham Moor and provide a great variety of weird and wonderful shapes. Many of the gritty monstrosities suggest all manner of things, including elephants, hippos, bears, mushrooms and some are said to have associations with druids, Mother Shipton and even the Devil himself.

Whinlatter Forest Park 017687 78469 www.forestry.gov.uk.

Explore the mountain forest on foot or two wheels, orienteering, playground and picnic area. From April to August annually watch the Bassenthwaite Ospreys through the live nest camera or visit the Lake District Osprey Project and see the ospreys from the outdoor viewpoint or visit the exhibition and live video camera at Whinlatter.

Talkin Tarn Country Park, Cumbria 01697 73129 www.visitcumbria.com.

Stroll around this delightful glacial tarn, hire a boat in summer or enjoy the Boathouse Tearoom all year round. The tarn is glacial in origin, being formed about 10000 years ago, and is fed by underground streams. You can sail, windsurf, canoe or hire one of the wooden rowing boats. Fishing is available at the Tarn. There is a small camping and caravan site, and a permanent orienteering course is laid out around the park. The shop hires mountain bikes and there are suggested routes taking you through beautiful countryside. There is a 1.3 mile path round the tarn which is suitable for wheelchairs. The Boathouse Tea Room has superb views of the tarn, and a blazing log fire.

Aira Force Waterfall, Cumbria 01768 482067 www.visitcumbria.com.

A magnificent beauty spot, Aira Force and the Ullswater Valley are home to a large variety of wildlife, including Wordsworth's famous daffodils. Probably the most famous of the Lake District waterfalls, the main force falls 70 feet from below a stone footbridge. Aira Force provides a glimpse of a landscaped Victorian park with dramatic waterfalls, arboretum and rocks scenery.

Low Sizergh Barn, Lake District 015395 60426 www.lowsizerghbarn.co.uk.

There is a farm shop, tea room, craft gallery and farm trail on this organic dairy farm near the Lake District national park. The farm shop is filled with one of the best selections of local and speciality foods in Cumbria, with farm products -- our own organic Kendal cheese, organic eggs and ice cream made from our milk -- taking pride of place. Watch the milking from the gallery between 1.15-3.15pm.

Lancaster Canal Trust 01524 735504 www.lctrust.co.uk.

Run by enthusiasts, experience their narrow boat "Waterwitch" for a trip along the pretty northern reaches of the Lancaster Canal.

Abbott Lodge Jersey Ice Cream, Penrith 01931 712720 www.abbottlodgejerseyicecream.co.uk.

Meet the Jersey cows at this working farm, try the ice cream and work up an appetite in the indoor and outdoor playgrounds. The farm offers a tea room, function room for educational visits and you can watch the calves at their computerised feeding station. Sampling the ice cream is a must!

Alderley Edge, Cheshire 01625 584412 www.nationaltrust.org.uk.

Dramatic wooded hill rising out of the Cheshire plain. Legend says that kind Arthur lies sleeping underground. Explore mysterious trails and seek the wizards well. Alderley Edge is designated an SSSI for its geological interest. It has a long history of copper mining, going back to Bronze Age and Roman times. The mines are open twice a year, organised by the Derbyshire Caving Club. There are views across Cheshire and the Peak District and numerous paths through the oak and beech woodlands, including a link to Hare Hill.

Cheshire Workshops, Buwardsley 01829 770401 www.visitchester.com.

Discover candle making and watch working craftsmen. Lots of activities for children at weekends and school holidays including candle dipping, badge making, card making and pottery painting. Open 10-5pm Delamere Forest Park, Cheshire 01606 882167 Take a picnic and explore this extensive forest. Visitor centre and ranger-led activities throughout the year, with extra events during school holidays. Good network of cycle paths.

Delamere Forest Park is Cheshire's largest area of woodland and is a place for families to let off steam, escape the crowds and find peace in the heart of the forest.

Ainsdale on Sea Beach & Discovery Centre, Southport 0151 9342967.

Explore this extensive, clean beach and the maze-like sand dunes. Hire a free bicycle from the centre or take part in extreme kite activities.. Ainsdale-on-Sea is an ideal starting point for exploring Sefton's Natural Coast. A mile from the village of Ainsdale, it is Southport's main bathing beach with Lifeguards on duty during the summer season.The beach is one of the most popular on the coast and achieves the Seaside Award annually.

Wirral Country Park, Cheshire 0151 327 5145.

From the restored Hadlow Station, walk or cycle along 12 miles of footpaths, with shorter pathways into other areas. Fantastic bird watching, with great views over the Dee Estuary to North Wales. Visitor centre and guided walks. Wirral Country Park is a place of contrasts. Badgers and Foxes hunt the quieter parts, birds nest in the dense hedges or feed on the berries in winter, and you may see up to 10 kinds of butterfly in summer. Head for the 60 feet high, boulder-clay cliffs and look out over the Dee Estuary and you'll smell the tang of mud and salt, feel the sea breeze and get a sense of space quite unlike the enclosed, inland Wirral Way.

Greater Manchester Police Museum 0161 856 3287 www.gmp.police.uk.

Step back into unruly Victorian Manchester, see the wooden pillows in the Victorian cells, plus uniforms and equipment. Learn about forgery and forensic science.

Three Owls Bird Sanctuary & Reserve 01706 642162 www.threeowls.co.uk.

Relying heavily on donations, this sanctuary takes wild distressed birds, rehabilitates them and returns them to the wild. Between 300 and 1600 birds can be seen depending on the season.

Stockport Hat Works 0845 833 0975 www.hatworks.org.uk If you have ever wondered how hats were made, then this is the place for you. View the history of hat making from its origins through to mechanisation in the mills with working machines in action.

National Football Museum, Preston 01772 908442.

Investigate all aspects of the beautiful game including displays and Hall of Fame, Match of the Day Interactive and the Goalstriker Experience. Discover the best football museum in the world. Exciting moments, unforgettable memories, world famous objects, legendary players, 'hands-on' fun for all the family ... best of all it's FREE Hadrian’s Wall World Heritage Site 01434 332002 www.hadrians-wall.org.

This famous frontier was built by the order of the Roman Emperor Hadrian. Along its length are many museums, forts and temples. Follow the national trail, an 84 mile trail from coast to coast with links to 40 short walks. Steeped in history there are 14 major Roman sites, forts and museums and countless milecastles and turrets to explore, as well as many great non-Roman places on offer. Explore the stunning landscape of the World Heritage Site on foot, or cycle, at your own ease �Let’s Go with the Children’ Guide Books are published by Boomerang Family Ltd.

On Sale Date 23rd March 2009 Price: ÂŁ3.75 Exclusive Offers from: Boden, Billy Elliott, Wicked, Grease, Fitness First, Fit for Sport, Sea Life Centres, Babyworld, Chiquito Restaurants.

Available from; Morrisons, Waitrose, Asda, Tesco, Sainsbury’s, Co-op, Martin McColl, WH Smith and Waterstones.

Feb 24 2009 Liverpool Echo

FOURTEEN-year-old Boccia star Adam Munroe is targeting Olympic glory - after being voted Belle Vale’s Most Improved Young Sportsman.

The Springfield Special Needs School pupil, from Huyton, is now targeting a medal at this summer’s Special Olympics which take place in Leicester in July.

Success in the east Midlands would cap a remarkable rise for the teenager who took up the sport eight years ago.

“We’re delighted,” said dad Rob.

“The �most improved’ award is something that he really does deserve because he has done so well.

“And he’s looking forward to Leicester now.”

Boccia is a sport similar to indoor bowls.

The sport is one where the competitor aims to roll their ball as close to the target ball, or �jack,’ as possible.

Adam, who has cerebral palsy, uses a ramp to aim the ball as close to the jack as he can, a skill that requires a lot of concentration and precision.

“Adam’s award is fantastic,” said Joan Bateman, his coach at the Kensington and Fairfield Sports Club.

“And it is all the more remarkable because he only started using the ramp two years ago when he became too weak to throw.

“This is a huge ego-boost for Adam, and if anyone deserves it it is him.”

The Special Olympics in Leicester will bring together hundreds of the best disabled athletes from around the globe, and Adam can’t wait to compete.

“He received some money as part of his �Most Improved’ prize,” said Rob.

“He has already spent it on a new pair of training shoes for himself and his mate for the Special Olympics, which sums him up.

“He’s excited about going, but is also thinking of his mate who’s competing as well.

“We’ll be going to Leicester for about eight days for it in July, and he can’t wait.

“He’s enjoying being famous!”

Years of pain - but Neurofibromatosis sufferer Kirsty Ashton just wants to help our kids

By Mandy Appleyard

Kirsty Ashton has had years of surgery to battle an incurable disease. But instead of feeling sorry for herself, she raised £75,000 to make other children’s wishes come true.

Like any 18-year-old, Kirsty Ashton is full of dreams for the future. She’s hoping to go to university soon, then to become an actress, a model or a TV presenter.
But Kirsty has already seen more of life and confronted more of its challenges than most of us ever will.

Kirsty needs crutches to walk far. She has been in hospital countless times, undergoing surgery every year since she was 14.

A lot of the time she’s in severe pain and her body bears the scars from operation after operation to remove tumours from her neck, legs, knees, ankles and feet.
She takes a cocktail of drugs every day, has physiotherapy every week and has some learning difficulties.

But Kirsty shows not a trace of self-pity. In fact she finds time to raise thousands of pounds so that other children with serious illnesses, often terminal, can visit special places like Lapland and Center Parcs.

She says: “I just want to do something for other people. Helping others is what makes me happy.”

Kirsty, who lives with her family in Wythenshawe, Manchester, has every reason to be angry at life, but she isn’t.

She was 11 weeks old when she was diagnosed with neurofibromatosis (NF) – a genetic disorder which can cause multiple tumours to grow on nerve endings on or inside the body.

It affects the nervous system and can even lead to an earlier death.
Her mum Julie, 49, explains: “I have NF but less severely than Kirsty. I knew there was a 50-50 chance of passing it on so when my first child Christopher was born, it was a relief that he was clear.

“But as soon as Kirsty was born I noticed brown patches on her skin, which is a symptom, and a small tumour on her back.”

Despite the diagnosis, life went on as normal until Kirsty was eight, when a check-up revealed curvature in her spine and she was diagnosed with scoliosis. Tumours growing on her spine were pushing it to one side.

It was bad news. But Kirsty and her family didn’t give up.

“In fact my brother Chris knew I’d always wanted to go to Lapland,” Kirsty says. “He said I had been so brave that he wrote to When You Wish Upon A Star – a charity that makes dreams come true for children with life-threatening illnesses – and told them about me.

“I had a great day and I met a girl there that I really liked but she passed away not long after we got back. That’s when I realised that without the charity she would never have got to see Lapland in her short life.”

Julie adds: “The trip really moved Kirsty. She went with her dad John and saw children with cancer and terrible conditions.”

Kirsty decided to start helping local charities, selling bric-a-brac and giving the money to charity.

Meanwhile she still had to deal with her own disease.
When she was nine she started wearing a Boston Brace 23 hours a day to help support her back and ease the pain.

A hard “jacket” reaching from the top of the chest to the bottom of the hips, it was hot and uncomfortable. But Kirsty amazed doctors with how quickly she got used to it, and she wore it permanently for the next six years.

“Kirsty had to have major surgery at 14, where the surgeon put titanium rods into her spine to straighten it,” Julie says.

“Removing the tumours was too risky because of the danger of paralysis so the rods were seen as the next best thing. But even the surgery could have paralysed her.”
She spent two weeks flat on her back and three months in hospital – yet still she stuck to her mission to make life easier for other sick children.

In the past three years she has raised an incredible £73,740 for When You Wish Upon A Star. Kirsty explains: “I organised a charity ball which raised £24,801 and a Valentine’s ball which raised £23,000. I did a sponsored spell – because I’m dyslexic and thought it would be a challenge – in my lunch hour and raised £170.”
She’s also sold home-made Christmas cards, organised a rugby tournament and sold more than 800 pin badges.

A total of 94 children have been able to travel to Lapland in the last three years as a result of Kirsty’s fund-raising.

But Kirsty, who has written a book about her struggle with NF and is now looking for a publisher, has no intention of stopping there.

“I want to raise a further £75,000 in the next year to send 30 to 40 families to Center Parcs with children who are too poorly to fly.”

Maria Moseley, the charity’s events manager, says: “Kirsty is an amazing young lady. She is our own fairy godmother – and she’s a fantastic role model to other young people. She helps make magical memories for some courageous children.”
And Kirsty’s own battle goes on. She has endured serious surgery every year for the last four years.

Each time she’s had five tumours removed and has been left with three particularly severe scars on her back.

Her mum says: “Neurofibromatosis can be very cruel and we don’t know whether her life expectancy will be impaired.

“But Kirsty’s a very bright and happy child in spite of all the
challenges she faces.

“She never complains and is always thinking of other poorly children.
“She’s one in a million – I love her more than words can say.”

Kirsty’s wish... to be a model
We treated Kirsty to a day living her dream – to be a model.
Courtesy of the Mirror, the young campaigner was whisked to our photographic studios in London, where a top stylist was waiting to meet her.
She was given a luxury makeover before strutting her stuff in front of the camera – producing a portfolio of shots.

She says: “I loved every minute of the day, it was brilliant from start to finish.
“Having my make-up done, and trying on all of the clothes made me feel like a real model.

“The photos are great and I’m just so pleased I had a chance to do it.”
In recognition of her hard work and dedication, Kirsty was named
a “UK Huggable Hero” in 2008 by Build-A-Bear Workshop. Kirsty has
her own website at www.kirstysstory.co.uk and When You Wish
Upon a Star can be reached at www.whenyouwishuponastar.org.uk
or by calling 0161 477 7277.

By Dr. Neetu Dhiman - Richmond Review

Chronic pain and inflammation are conditions that many suffer from and can trigger a host of imbalances in overall health if left untreated.

While I was in my fourth year of naturopathic medicine I came across a technique that I have used in my practice with quite promising results. The Bowen technique is based on the philosophy that we are all born with a certain blue-print of health and balance. With gentle non-invasive stimulation of neurovascular bundles, muscles and tendons, the body will be put in a resting state and innately know how to self heal and restore balance.

Tom Bowen, born in Australia, developed the manipulative therapy known as the Bowen technique. After serving in the Second World War, Bowen became interested in ways of alleviating human suffering. He noticed when he made certain moves on a body it had particular effects. He developed the technique without training in any health care field.
I was drawn to the Bowen technique due to the philosophy of “less is more.”

During a session, several moves are performed in a choreographed order with set breaks between moves. The patient is fully clothed and lying face down on a massage table. Treatments initially are once per seven days, with the treatments continuing to work during the week. The goal is the permanent reversal of pain, assuming re-injury has not occurred. If the pain has not started to shift at the end of five sessions, there is a re-evaluation to determine if Bowen is in fact the correct treatment for this condition or if there is in fact an underlying condition preventing healing from occurring.

Additional reasons for chronic pain aside from structural imbalance could include:
•Adrenal insufficiency: The hormone cortisol helps us respond to the demands on our body during times of prolonged stress or chronic pain. It is our body’s main anti-inflammatory hormone.

When cortisol levels drop after patients experience prolonged periods of elevated stress or pain, the body can respond with chronic pain and inflammation.

•Thyroid function: The thyroid gland produces hormones, which are responsible for our metabolism. Low thyroid function can be one of the main underlying causes of chronic pain, and possibly the reason repeated massages, adjustments, and Bowen treatments are required. In some instances, if the bodywork treatment you are currently undergoing is only providing relief with repeated sessions, adrenals and thyroid status may be worth investigating.

•Food sensitivities and toxic burden: Prolonged exposure to environmental toxins and heavy metals can result in chronic pain and inflammation, water retention and muscle rigidity. It is common that certain foods can trigger an inflammatory reaction in the body. I have found gluten to be one of the major disruptors of the central nervous system. When I am treating nervous system issues and nerve related pain, I always consider an underlying gluten sensitivity. Individualized detoxification protocols and food sensitivity testing may be essential to reverse the chronic pain and inflammation in certain individuals.

As in nature, every organism is self-regulating. There is always an underlying reason for the pain or inflammation. It is our body’s natural defense mechanisms, trying to immobilize the joint and protect the injured area. Often anti-inflammatories such as steroids or non-steroidal anti-inflammatories will mask this healing process and the “dis-ease” process will spread deeper in the body.

The Bowen technique is phenomenal for treatment of chronic pain from motor vehicle accidents. These have been my most successful cases. Chronic pain of sciatica, sports injuries, constipation, digestion, hernias, neck injuries, frozen shoulder, nerve pain, tendonitis, infertility, PMS, hormone imbalance, scoliosis pain, just to name a few.

The Bowen technique has amazed practitioners of all disciplines and can be an integral part of a successful treatment plan for healing chronic pain and inflammation. Although it is not a new technique it is still fairly unheard of in Canada. For more information see www.bowtech.com, and spread the word to family and friends across Canada.

Dr. Neetu Dhiman is a naturopathic physician and certified advanced Bowen therapist. drdhiman@yourbriohealth.com

By Jessica J. Burchard
The Winchester Star


--------------------------------------------------------------------------------

Winchester — The best option for Bonnie Justice’s early-onset Parkinson’s disease may be a two-part brain surgery and a dopamine receptor implant.

On Monday, the 48-year-old from Berryville will travel to Johns Hopkins Hospital in Baltimore for a consultation.

“Pretty much the only option for me is surgery,” she said in a telephone interview Thursday.

Justice was diagnosed with the disease nine years ago. It has no cure.

While she has few treatment options now, that may change.

On March 9, President Barack Obama signed an executive order to expand guidelines for embryonic stem cell research and provide federal funding.

The order gives federal officials 120 days to issue new guidelines that will make a far wider range of experiments eligible for federal funding.

Meanwhile, Justice continues to take prescription medication daily. The medicine upsets her stomach, though, and does not completely alleviate her symptoms.

Early-onset Parkinson’s is a degenerative neurological disease that causes the neurons in the brain to break down, particularly the dopamine-secreting cells. Dopamine is a neuro-transmitter that sends signals controlling bodily movements.

Symptoms include muscle stiffness and weakness, difficulty swallowing and speaking, and, in some cases, tremors on one side of the body.

Early-onset Parkinson’s is classified as any instance of the disease that is diagnosed in someone under 60.

Promising research

Mariecken Fowler, a neurologist at Winchester Medical Center specializing in the treatment of Alzheimer’s and Parkinson’s diseases, said no current medical treatment can stop or reverse the damage done by neurological diseases.

“It’s the death of the cells that is causing the problems,” she said.

Fowler said the brain is unable to produce replacement cells for those destroyed, and scar tissue covers the areas damaged by the diseases.

The scar tissue means that patients are unable to regain any of their bodily functions and will continue to deteriorate.

Such a breakdown is common in Parkinson’s, Alzheimer’s, multiple sclerosis, Huntington’s disease, and other neurological disorders.

Fowler and other neurologists are optimistic about the use of embryonic stem cell research to possibly reverse and cure these diseases.

Embryonic stem cells are prized in the scientific community because they can transform into any type of cell in the human body.

If scientists could control the metamorphosis, they might be able to create replacement tissues to treat a variety of diseases and conditions, from diabetes and Parkinson’s to paralysis caused by spinal cord injuries.

Fowler said scientists inject genetic material into the center of embryonic stem cells to dictate what the cells will eventually become. For example, DNA from a spinal cord would create a spinal cord cell.

The cells contain the same DNA as the person who receives them, which means the patient is not in danger of having her body reject the new cells, as can happen with other treatments.

Two sides to the issue

Although Justice considers brain surgery to be the most effective way to cure her Parkinson’s symptoms, she is optimistic about embryonic stem cell research.

“I think it will give a lot of people hope,” she said. “A lot of people have been frustrated by the lack of research being done.”

One such person is Rick Loughborough, who was diagnosed in November with amyotrophic lateral sclerosis — more commonly known as Lou Gehrig’s disease — by neurologist Paul Lyons at WMC.

“It pains me that we could have been eight years closer to a cure for my disease and others if we had had access to embryonic stem cell research,” he said in a phone interview Thursday from his home in Upperville.

During President George W. Bush’s two terms in office, his administration chose to curtail embryonic stem cell research, which limited federal funding to a small number of stem cell “lines,” or groups, that were obtained and stored before Aug. 9, 2001.

Loughborough, 44, has felt his body yielding to ALS since last summer. He is now unable to walk and uses an electric wheelchair to move around his home.

He can no longer work, and spends most of his time in his home, entertaining guests and watching television.

ALS is a progressive neurodegenerative disease that destroys nerve cells in the brain and spinal cord. This leads to a failure of the brain to control body movements.

The disease has no cure. People with ALS typically live for three to five years after being diagnosed.

Loughborough said people who have not personally experienced or seen someone with a debilitating neurological disease cannot fully understand the need for embryonic stem cell research.

“I think it’s very hard to have a moral high ground on this or other issues during a crisis situation,” he said. “I think if they’re living with the issue themselves, then they can see both sides of the issue.”

“A human life”

Some people consider research on embryonic stem cells to be a sin.

“I think [the research] demoralizes the people of the United States,” said Pastor Ken H. Smith of the Open Doors Baptist Church in Clear Brook. “We need to understand that the embryo is a human life.”

He and many other religious people say they believe the idea of using cells from a human embryo for scientific research goes against biblical teachings that argue life begins at conception.

Even the thought that embryonic stem cell research might save lives and end suffering does not sway Smith.

“If you have to take a life to save a life, what are you gaining?” he asked. “I don’t think the sacrificing of an unborn [child] is worth the adding of a few years of life for someone else.”

Fowler understands concerns about using embryonic stem cells for research, but takes a more scientific view of the research.

“I understand that there are a lot of definitions of when life begins,” she said. “These balls of cells are from fertility clinics where [the frozen embryos] were going to be destroyed.”

The embryos are left over from in vitro fertilization — a process in a laboratory in which an egg is fertilized by sperm outside of the womb. A woman usually has six to eight of her eggs removed and fertilized, but does not need all of them to become pregnant.

A variety of debates

Shenandoah University philosophy professor Barry Penn Hollar said the source of the embryos should be scrutinized in the stem cell research debate.

“This stem cell discussion raises a lot more discussion than what it looks like,” he said. “It raises issues of parenting, sexuality, and moral limits on how we reproduce.”

Despite the controversy surrounding the use of embryonic stem cells for medical research, Justice is optimistic.

“I’m excited at the promise of more research.”

The Associated Press contributed some information for this report.

...www.parkinsons.org
www.alsa.org
www.aan.com

Life support machine switched off three days after skiing accident in Canada

By David Usborne in New York


Natasha Richardson poses during a photocall for the film 'Asylum' at the 55th Berlinale International Film Festival in Berlin in 2005

© More pictures
Family members confirmed late last night that Natasha Richardson, the luminous daughter of one of Britain's greatest theatrical dynasties, had died in a New York hospital three days after a skiing accident on the slopes of Quebec that had at first seemed like nothing more than a tumble.


A brief statement issued by the family spoke of the devastation felt after the 45-year-old star of stage and screen, and wife of the actor Liam Neeson, succumbed to what had been described in earlier, but unconfirmed, media reports as a severe head trauma that had quickly led to her becoming brain dead.

Richardson, who won a Tony Award for her portrayal of Sally Bowles in the 1998 revival of Cabaret in New York, was skiing with her two sons on Monday in the Mont Tremblant resort when she fell on a beginner's run. Though she at first seemed unhurt, she complained an hour later of a headache and was transferred to hospital. She was transferred to the Lenox Hill hospital in Manhattan on Tuesday.

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Michael Coveney: Woman who inherited the full expressive talent of Redgrave dynasty
By yesterday, her mother, Vanessa Redgrave, her sister, Joely Richardson, and Neeson were leading a vigil by her bedside as reports suggested that she was indeed in a coma from which there was no hope of return.

Lauren Bacall was also seen at the hospital. News websites were reporting in the afternoon that the actress had already been taken off life support and the end could not be far away.

Richardson was a beloved member of a family that had the theatre and acting in the marrow of its bones. Aside from her mother, she had Corin and Lynn Redgrave as her uncle and aunt while her grandfather was the beloved master of Shakespeare and celluloid romance, Sir Michael Redgrave.

It was a pedigree that she occasionally admitted complicated her own path to self-achievement in the art.

"The names Richardson or Redgrave didn't help," she told an interviewer in 2007. "But the last thing you want is to ride any coattails, because you don't want people to be accusing you of nepotism. You want to be able to learn and practice, and not to be thrown into a spotlight before you're ready for it."

The family statement put an end to what had already been more than 48 hours of excruciating public speculation about the fate of the actress, marked by a throng of cameras and reporters who had been camped out at the entrance to Lenox Hills on the Upper East Side of Manhattan. She was flown from Montreal, where she had been receiving emergency treatment, on Tuesday.

"Liam Neeson, his sons, and the entire family are shocked and devastated by the tragic death of their beloved Natasha," the statement said. "They are profoundly grateful for the support, love and prayers of everyone, and ask for privacy during this very difficult time."

The pain for the family – for Liam, for their two boys, and for Vanessa – has only just began. It comes after Vanessa has barely finished appearing in the play The Year of Magical Thinking by Joan Didion tracing the grief of a mother that comes with the loss of a daughter. She and Natasha, meanwhile, were preparing to work together on a revival of A Little Night Music on Broadway.

Even if she was already breathing the trade of the boards before, her commitment to the theatre became even greater after her marriage in 1994 to Neeson. Yet, it may also be true that she never quite attained the worldwide fame that she might have, not for any lack of talent but because she resisted taking mainstream Hollywood projects with the exception of Maid In Manhattan with Jennifer Lopez perhaps.

"You'll have to blame Ralph [Fiennes] for that one," she said once. "He's the most wonderful actor, a good friend; we thought we'd have a laugh." Otherwise she was often attracted to smaller, independent films.

In New York, both Richardson and Neeson had become highly popular regulars on the social and charity season, particular among some Irish-Americans. The actress also secured herself a special place in New York with her scintillating Sally Bowles. She also won wide praise on the Great White Way for performances in A Streetcar Named Desire and Closer.

Upon her fall on Monday she at first stood up, declared herself fit and returned to her hotel room. She was accompanied by a member of the resort's ski patrol, however, and was taken to hospital after admitting to a bad headache one hour later.

She had reportedly travelled to the resort on Sunday with her two boys to ski while Neeson worked on the set of his next film, Chloe, in Toronto. The couple live in New York city and have a country home in the Hudson Valley.

While there was no word from doctors last night to explain her injuries, it appeared she had suffered something close to what is sometimes called "Walk and Die Syndrome", where a head trauma appears at first to have little impact on a person but causes bleeding and brain swelling in the skull that can lead to death.

Although Richardson occasionally admitted to having had a difficult relationship with her mother as a child, in later years they became extremely close. "There's always something unexpected about her work, because she's sort of fearless," Richardson said recently. "When she hits it, then it sort of is just incandescent." She added: "She is a great mother."

Richardson was cast at the age of four by her father, Tony Richardson, as an extra in his film The Charge of the Light Brigade, but first gained serious recogntion for her performance in Anton Chekhov's The Seagull in a 1985 production in London that featured her mother and Jonathan Pryce. The performance earned her the London Drama Critics' most promising newcomer award. She was 22 at the time.

The statement confirming the death was issued by Alan Nierob, a spokesman for Neeson, who was on set in Toronto until the accident. She leaves behind two boys, Micheal and Daniel, aged 13 and 12. The boys, were reportedly also at her bedside yesterday.

Delay can be deadly: Head injuries

The normal rule in head injuries is that if there is no impaired consciousness at the time, there should be nothing to worry about. Natasha Richardson is the – desperately unlucky – exception. Even minor blows to the head can be lethal.

She had been skiing with an instructor on a "green" run, the easiest, when the accident happened. She was not wearing a helmet but there was no collision and it does not appear that any other skier was involved. She was reported to be laughing and joking after the accident, refused medical care and returned to her hotel room. Only later did she request help, an ambulance was called and she was taken to hospital.

Her condition has not been confirmed but it is likely she has suffered an extradural haematoma, a bleed in the brain that occurs when an artery is ruptured. The brain is like a blancmange inside the wooden box of the skull and a blow to the head can sever a blood vessel with relative ease.

Minor bleeds should resolve naturally but a major bleed creates a pool of blood between the meninges, the membranes that surround the brain, that presses on the brain causing a severe headache. Unless this pressure is relieved, it may lead to permanent brain damage, coma and death.

Neurologists routinely warn patients who come to hospital with head injuries that even though they appear unharmed – being fully conscious and walking around – they must return urgently if they get a headache, start vomiting or feel unwell over the next few hours.

Emergency treatment, which involves drilling a hole through the skull to drain the blood and relieve the pressure, is lifesaving and can prevent permanent damage. But it must be carried out quickly if it is to be effective. Delay can be deadly.

Jeremy Laurance, Health Editor

A decompression chamber may help children with autism, say researchers.
After 40 hours of hyperbaric treatment autistic children showed significant improvements in social interaction and eye contact compared with controls.
The BMC Pediatrics study could not show if the results were long-lasting but should prompt further investigation of the treatment, the US team said.
One theory is that oxygen can help reduce inflammation and improve flow of oxygen to brain tissue.

Hyperbaric treatment - effectively giving high concentrations of oxygen at increased atmospheric pressure - has been shown to have some benefit in other neurological conditions such as foetal alcohol syndrome and cerebral palsy.
“ We're certainly not talking about a cure, we're talking about improvements in behaviour, improving certain functions and quality of life ” Study leader, Dr Dan Rossignol

Some studies have looked at the treatment in children with autism but they have not compared with a dummy procedure raising questions around a "placebo effect".
In the latest study, carried out at six centres in the US, 62 children aged two to seven with autism were randomly assigned to receive 40 hours of treatment over a month with 24% oxygen at increased atmospheric pressure (1.3 atm) or normal air in a slightly pressurised room (1.03 atm).

Children who received the treatment showed significant improvements in overall functioning, receptive language, social interaction, eye contact, and sensory or cognitive awareness.

In all, 30% in the treatment group were rated by doctors as "very much improved" or "much improved" compared with 8% of those in the control group.
Overall, 80% in the treatment group improved compared with 38% of controls.
Behaviour

Study leader, Dr Dan Rossignol from the International Child Development Resource Centre, in Florida, said the use of hyperbaric therapy for autism has been gaining popularity in the US where parents can buy their own hyperbaric chamber if they have a spare $14-17,000.

He said the findings would be quite controversial and he too was initially very sceptical of the idea but was prompted to do more research after the treatment showed benefits for his two sons who have autism.

"We're certainly not talking about a cure, we're talking about improvements in behaviour, improving certain functions and quality of life.
"The next step is to try to find out which kids do respond, because it's an expensive treatment - it may be that kids with more inflammation respond better.

“ We also don't know about long-term effects - it could be a transitory effect ” Richard Mills, Research Autism
"It would also be nice to know how long the treatment lasts, and the finding needs to be confirmed."
Richard Mills, research director at Research Autism, said this was the first well-designed study looking at the therapy.
"We know this kind of therapy is useful in a number of neurological conditions and that's been well established.
"What we don't know is how useful it is in autism, what we could be seeing is an improvement in other neurological conditions that go alongside autism.
"We also don't know about long-term effects - it could be a transitory effect."
Professor Philip James, an expert in hyperbaric medicine at the University of Dundee, said the pressure used was no more than that used to pressurise an aircraft cabin on the ground.
He added that oxygen was the "controller of inflammation" but also had other effects on regulation of genes and tissue regeneration.
But even if proven, the treatment may not be for everybody.
"When you have any condition, there are people who have too much damage to get better."
"All the oxygen is doing is bringing things towards normal."

Story from BBC NEWS

During the last month, I have experienced a good many aha moments. Moments of clarity, moments of enlightenment, and moments of vision. All leading me to develop a deeper sense of myself and the life I live, and am committed too. A life that I have led with purpose, meaning, dignity, and desire. It has been a worthwhile journey with all its upheavals, challenges, changes, and, cataclysm events.

Because of this, I now can delight in the magnificent moments I have, the wonderment of my own growth, and, the opportunities to share with others. I have been blessed with the ability to focus in on the good, the positive, the inherent attributes I have achieved, as well as have been invoked with some kind of divine favor, by which I have been given the good fortune, possession, and talent to give it away freely while gently empowering others.

I have continued to receive great pleasure and delight from my many acts of courage. To go where no one else has ever gone before. To make straight my way, and, to shed light in a way never heard before. This light is beaming brightly because I listened to my own drummer. Because I felt my own heartbeat, and because I would not take no for an answer. I made my way through this harsh, cold, unpalatable, cruel world. And am making a seat at the table.
I have never cease to keep my vision alive. I have never cease my dreams, nor have I stagnated in the act to become the best person I could become on all levels of my being. Physically, I exercised. Emotionally, I let go of old ways, ideas, and beliefs, adopting new ones in its place. And spiritually, I not only envisioned today, but I envisioned my future, and how I wanted to change my life’s journey. It took me a while to figure out how my life was going to unfold, when it was going to take place, and when it was going to come to fruition! My whole life’s journey has been a series of passages and quest, towards an ultimate diurnum, in my souls pathway toward a balanced, harmonic, way of life.

Mar 3 2009 by Helen Rae, Evening Chronicle

A LITTLE boy who was born with an extra half-vertebrae is set to have a major operation to correct his spine.

Jack Sundin, two, of Whitley Bay, could not have had a more difficult start to life.

He was born with a range of serious health problems, including congenital scoliosis hemivertebrae, a curvature of the spine that is the result of an extra half-vertebrae. Now consultants at Newcastle’s Freeman Hospital have told his parents Lisa, 33, and Alistair, 43, that their son’s spine is curving quicker than expected.

In the next few weeks the youngster will need an MRI and CT scan before the six-hour operation.



Speaking from their home in Hertford Close, Beaumont Park, Mrs Sundin said: “We found out before Christmas that Jack’s spine was out by 33° and within 10 weeks that has moved to 45°.

“We’ve been told he needs to have an operation as soon as possible and there’s a 50% chance there could be other medical problems as his curved spine could be putting pressure on his internal organs.

“We knew Jack would need an operation on his back in the future but we never expected it to be this quick.”

After the operation Jack, who also lives with his siblings Hollie Graham-Scott, eight, and James Holmes, 14, will be put in a back brace.

Jack was born prematurely at 32 weeks and was also diagnosed with a hole in the heart and defective valves – and tracheo-oesophageal fistula, where the bottom end of the food pipe is joined to the windpipe.

Within days of being born, he had a major operation to rectify his foodpipe abnormality. Last April the youngster had open heart surgery at the Freeman Hospital. Jack has also been diagnosed with chronic lung disease.

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.”

March 11, 2009 04:26 PM
Kyle Stewart
By Keitha Nelson -

BATON ROUGE, LA (WAFB) - President Barack Obama lifted the ban on federal funding for stem cell research this week, fueling the argument about whether it's a vital medical advancement or murder, but for one seven-year-old Louisiana boy with a brain disorder, stem cell treatment may be his only hope.

Watch Him

On any given day, Kyle Stewart can be found rolling around in his wheelchair. He doesn't let his disability get in the way of being a kid. He fishes, plays baseball, and loves to ride horses. Kyle aspires to be a professional bull rider when he gets older and his mom wants to make sure his dream comes true.

Patricia Stewart and her only child are headed to China for umbilical cord stem cell treatment. Kyle will get stem cells through an IV. "They say that it could help with trunk control," Stewart said. "And his hand movements and his head control." She says the treatment for neurological disorders is not available in the United States, but she thinks it should be. Stem cell research has a number of opponents because in some cases, embryos are destroyed to create the cell lines. Stewart argues that if it helps people, there shouldn't be a big issue. "It's so hard until you're in the position and it's your child," she said. "Then you believe that whatever needs to be done you would do."

Determined to help her son, Stewart and her family have planned fundraisers and benefits, with the hopes that a trip to China and some tiny cells will make a huge difference. "We just hope that maybe something can help, a little change, a little better. We would be completely happy with that," she said.

Kyle is not alone. Connor Corken is a two-year-old boy from Amite who returned from China in August of last year after receiving umbilical cord stem cell treatments. He was blind. Little Connor can now see light, shadows, and movement. If you would like to help Kyle get his treatment in China, click here.

Well it is exactly 6 years since I had my surgery for Scoliosis and as you know I am waiting to have further surgery in the form of artificial disc replacement. Anyway following my recent consultation I have now been sent a copy of the x-rays that where taken on the day. Yesterday I also had a call from the hospital about my MRI under anesthetic and I am pleased to say I dont have to wait too long because it is the 26th March so I am getting ever closer to hopefully stopping the pain I have.

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.”

Story from BBC NEWS:

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Plans to make London railway stations more accessible to disabled people are behind schedule.

Thirteen stations should be wheelchair accessible by the end of 2009 but only five have so far been completed, Putney MP Justine Greening found.

Charity Scope said: "Accessible public transport is crucial to enable disabled people to go about daily business."

The Department for Transport said accessibility would be improved in a total of 40 London stations by 2015.

'Shambles'

Since 2006 the Department for Transport (DfT) has given Network Rail ÂŁ370m to carry out accessibility upgrades to stations as part of its Access For All scheme.

But in Parliamentary questions the DfT said planned upgrades had only been carried out on five of the 13 London stations, with a further three "nearing completion".

Miss Greening, Conservative MP for Putney and shadow minister for communities and local government, said the strategy was a "shambles".

"The government's botched handling of this scheme is a disgrace," she said.

"It is crucial to make public transport accessible to all, but yet again this government has been big on rhetoric to Londoners, but has failed to deliver."


“ Wheelchair users aren't going to go away ”
Rosemary Bolinger,
disability campaigner
Access has been improved at Balham, Herne Hill, Kingston, Purley and Orpington stations.

Disability campaigner Rosemary Bolinger said: "We've got the Olympics coming to London in 2012 and the Paralympics will also be coming.

"There are going to be more and more people around in wheelchairs, so it needs to be done."

Charity Scope added that better access for the disabled also eases access for the elderly and parents with baby buggies.

A DfT spokesman said plans to improve station access were being "taken forward".

"We are committed to delivering excellent services for all passengers at every stage of their rail journey," a DfT spokesman said.

"In total, 40 stations in London boroughs will have benefited by 2015 - five of these are completed, three are nearing completion and the remainder are in the design and development process."

Network Rail did not comment.

The Sun |Features




By EMMA COX

Published: 07 Mar 2009


WHEN Maureen Galyon gave birth in 1951, she had no idea she was expecting two babies - let alone conjoined twins.
The tots, joined at the torso, were not expected to survive the night as baffled doctors tried to work out if they could be separated.

Now, at 57, Ronnie and Donnie are the world’s oldest conjoined twins and have amazed the medic world by hanging onto life for so long.

And, as their health declines and they near their dying days, the pair have opened their doors to a documentary team to reveal the secrets of their extraordinary life together.

Although every day is a struggle as the men have to coordinate the simplest of tasks, they have a close, loving relationship and are able to live together in their own home in Dayton, Ohio.

The affectionate documentary, Extraordinary People: The World’s Oldest Conjoined Twins on Five on March 18 at 9pm, will bring hope to British mum Lisa Chamberlain who is expecting conjoined twins as it shows it IS possible for the babies to not only survive but to live a happy life.

Ronnie and Donnie’s younger brother Jim says: “They have four arms and four legs to coordinate and that takes years of practice. When they want to move they look at each other - it's not like it's telepathy but they think so much in harmony. It's fascinating.

“For things like shaving, between the two of them they don't really need a mirror, they take care of that by shaving each other’s faces.

“That's what you call a good bond with your twin brother.

“They go out to their favourite diner once a month and everybody treats them normally, as if they are two separate people, which is what they are.

“And they have their own possessions. Even if they look identical, there is two of everything, because it’s important that they keep their own identity.”

The pair have learnt to do all their own household chores using one hand each - and Ronnie even calls Donnie “the little wife” because he is so domesticated.

And though Donnie is scared of the dark, comfort is always close at hand as Ronnie gives him a brotherly cuddle in the bed they share.

But life joined to your twin brother is not always happy.

The pair - who have completely opposite personalities - get so irritated with each other they often have physical FIGHTS.

Jim says: “They don't like the same shows so usually the biggest arguments are over the TV even though they have two now. If one turns the volume up on his TV, the other turns the volume up even louder.



Close ... with brother Jim and his wife Mary
“The last time they got into it, four or five months ago, Ronnie had a shiner.

“They get mad at each other like any other brother, but they can’t go in the other room and cool off. It gets so intense and angry, it usually takes literally four or five days to simmer.

“Ronnie's happy go lucky, no cares in the world. Donnie is very articulate, very hard headed, very stubborn.

“When it finally runs its course, they’ll start crying because it’s over and they’ll both be bawling their little hearts out. One will reach over and kiss the other on the forehead and they've made up. When it's done, it's done.”

Their doctor, Glenn Kwiat, adds: “The closeness that Ronnie and Donnie share is not always a positive. If you think of somebody, even the person you care about most, and imagine you were chained to them 24 hours a day, never being able to get away - their whole life is a compromise.

“I’ll go over there and there’ll be black and blue eyes. I actually had to sew one of them up because the other one had punched him.”

Other problems include the twins’ lifelong desire for a physical relationship with a woman - and even a baby.

Although the brothers have separate hearts, lungs and stomachs, their vital organs join in the digestive tracts - so they have one lower intestine and one set of sexual organs.

Jim says: “They would love to have been able to date and marry and father children, but having just one set of sexual organs, who would be the father? It gets a little quirky, does it not?”.

Dr Kwiat adds: “Their male function has been normal. And that's something that, when they were younger, had to be addressed because they had the normal male urges and the normal hormones. Trying to channel those so they didn't become aggressive or frustrated was an issue.”

When the twins were born, they made medical history. Conjoined twins make just one in 100,000 births. Of those, up to 60 per cent are stillborn.

Ronnie and Donnie were kept in the Saint Elizabeth Hospital for 29 months as fascinated doctors observed and worked out if they could be separated.

But Jim says the chances of Ronnie surviving a separation were thought to be minimal - so, Maureen having rejected the children, their father Wesley was left to make the decision on his own. He decided not to risk it.

He says: “Their lower intestine is one. One penis, one rectum. Donnie has control of that. Therefore if they separate them, Ronnie would have to be reconstructed. And you're talking about the 1950s - that probably wouldn't have been too likely. That decision was made that if they both can't make it, we're not going to proceed with that.”

Wesley was inundated with requests for the twins to star in freak shows - and although he resisted at first, the cost of looking after the boys and their seven siblings soon meant he had to relent.

They had already been banned from schools as teachers said they were “too distracting” for other pupils - so they have never learnt to read or write, one of their biggest regrets in life.

Jim says: “You’d get people parked out the front trying to get a peek at them. You'd get, for want of a better word, curiosity seekers. Understandably, that's something you're not going to see all the time, two people stuck together. That's confounding. But it meant it wasn't a normal life for us.

“My dad had this trailer and Ronnie and Donnie would sit there watching TV and people could pay to watch them.

“People would say, “That's offensive, having them making a living like that”. Well, what are they supposed to do? It's not like they can go out and drive a truck for a living.

“Dad made a living through Donnie and Ronnie, and supported nine kids on that. We're proud of him for that.”

In 1991 Ronnie and Donnie retired aged 39 and bought a two-bedroomed house with the money they made.


Now, suffering scoliosis and arthritis as well as being dangerously overweight, the pair can stand only for short periods and rarely venture outside.

Jim and Dr Kwiat are preparing themselves for the fact Ronnie and Donnie may not survive much longer.

Dr Kwiat says: “When you look at the literature on conjoined twins, when one dies, it's often immediate that the other one dies. But in other cases it can be 17 or 18 hours before the other one dies.

“At that point of life, you’ve been joined to someone your whole life and they’re dead, and you know what's coming. If that happened to Ronnie and Donnie I think you would have to sedate the other one until nature takes its course.”

But however their life comes to an end, there are no regrets for Ronnie and Donnie, who believe they have had a happy life.

Touchingly, Ronnie says: “Our belief is this - let God separate us. Let the good Lord separate us. God made us, let God separate us, not using surgical knives.”

A lot has been cycling through my mind the past 24 hours. I’m going to step on some very fragile ground this morning, this may cause a stir among some Christians, and it might even get a few thumbing me over the head with their views of the Bible and what it really means for our world. I am gonna talk about creation, (In terms of God creating the world we live in) some “end times” drama and some words from Paul that I think may put some people back into healthy perspective.

I fist would like you (the reader) to put aside what you think you know. And what you’ve been presented about God, life and the Bible. Close your eyes, take a few deep breathes and let this entry teach you, speak to you and maybe even open up your eyes and mind and soul.

I want to share a verse from 1st Thessalonians 4:11-12
11 to seek to lead a quiet life, to mind your own business, and to work with your own hands, as we commanded you, 12 so that you may walk properly in the presence of outsiders and not be dependent on anyone.

Now if anyone knows anything about, they would know that I believe context is everything. In this case, in this verse. My main man Paul is talking to a group of Christians who refuse to work or do anything with their hands. Their acting this way because they believe God is coming back anytime to now, so there is no need to do anything at all with themselves or their lives. Some people had the attitude that because they have excepted Christ as their lord, that they’re some how now better than the “Sinners” of their day.

The verse is so central to how we live, Paul admits that he has NO idea when God will return a second time. And he urges them to stop thinking about it so much, and to spend their time working with their hands, feeding the poor and clothing people and ushering in the new kingdom, to earth. This reflects our current time I believe. Simply because we have Blogs popping up every where about the world ending soon.

And better yet, people calling our president the Anti Christ… That is a very huge claim. And I find it very annoying to say the very least… I mean so lady got mad at him, because he drank a beer? Seriously, get a life lady. If you ask me, I think we ought not to be focusing on when or how our world will end. Do I believe that this will happen? Yes, I do.

I believe the kingdom will come in love. But oh wait, wait about the wrath of God Brandon!!? Isn’t he gonna punish people!? Whoa.. where is the love in that? Its a serious thought to consider still mister Christian person.. I believe God’s wrath, when used to scare people and provoke others, is nothing more than insecurity in the highest of ways.

God does not get himself excited about bending us over his knee and spanking us. Please understand that Jesus came to show us how God really is. Yes he does get a bit cranked up in tone, but its always for a good cause. His message does is heavy, but it at no time aims to weigh us down.

And if I’m honest, when it comes to this end of the world crap. I think most Christians tend to only focus on themselves. Because its their ticket out of this world. Have we forgotten than when God created, he saw that it was. GOOD! And guess what people? He still bloody feels that way, even when people decide to screw it all up.

God knows what he is doing, and I highly doubt he wants us to sit on our butts, not doing anything because he’s come back anytime now. This is why agnostics and atheists say “Where is your God? ANYTIME now! And its not because God can’t be trusted, its because we honestly make ourselves look stupid. And I mean that in the most loving way possible.

In my eyes, I think that we have hidden behind the end times facade, as a way not to deal with the pain and coldness in the world. And you know it. you know it. I look in the world some days, and see such beauty in what God creates in nature and humanity, how could he want to destroy it all? He’s already done that once already.
Don’t you think its time we take on a new humanity?
Think about it… please.. this matters.

-Brandon the Writer

During my recent holiday from work, Mum and I visited the Stockton Independent Living Centre with our Occupational Therapist, to have a look at there adapted kitchen and see what could be done to help us.

I have to say that Mum and I was impressed with the demonstration kitchen there. The room had 2 kitchens setup, one being a height adjustable one, and the other being a conventional height. When I looked I was supprised at the height difference, although it didn't make it look out of place. Mind you when we came home and just looked at our kitchen as it is it felt a bit over powering and felt as if it was coming in at you.

I cant wait for it to get started because it is going to make such a difference too us, we just have to wait on the Council now to process all of the forms and our application for a grant. Once this has been sorted out the work can start.

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 ÂŁ9,027 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.

â–  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

I'm puzzled at the reaction among some disability activists in response to the Cheney-in-the-wheelchair affair.Some say objections to Chris Matthews remark ...
"And I can tell you again that metaphor here of the Vice President in that wheelchair - it is a metaphor for the low esteem with which he's held in this country. His numbers are pathetically low.
... are petty, and the energy could be better expended elsewhere. Some even accept and amplify the analogy.I don't agree, especially because the former vice president's use of a wheelchair became metaphorical fodder for a number of commentators ranging from the serious to the comedic.As a wheelchair user, I despise being used as a bad example, as a metaphor for punishment.If people with disabilities acquiesce to wearing an element of our lives as a mark of less-than, if we are assigned to appear in public as people suffering penalty, we are agreeing that others have a right to mistreat and exclude us.This goes beyond access and becomes a factor in the discussion of euthanasia.Of course, I have no right to dictate other people's responses, but I truly believe that the wealthy white men who comprise the chattering class have the displayed rank prejudice and ugly ignorance with their glib remarks about Cheney's wheelchair use.

Gary Presley

The sight of now former Vice President Dick Cheney using a wheelchair during the Barack Obama inauguration inspired a babel of sometimes dismaying comments.

The ugliest perhaps came from MSNBC commentator Chris Matthews, who said "And I can tell you again that metaphor here of the Vice President in that wheelchair - it is a metaphor for the low esteem with which he's held in this country. His numbers are pathetically low."Matthews' words are the typical characterization people with disabilities tend to expect from the glib chattering class, the sort of comment that confirms that too many who know too little and think too boorishly have too much influence.We remain at a point in human evolution where the word disability almost automatically implies negativity. I'm old enough to remember when the same issue was discussed in reference to the word "black." Would that I live long enough that the use of a wheelchair, temporary or permanent, is worth only a casual mention.

Gary Presley

An Op/Ed Piece in The Springfield (MO) News-Leaderby Gary Presley

I watched through a 21-inch window illuminating a world in black-and-white as Dr. Martin Luther King, Jr. led the civil rights movement.I watched sitting down, not "sitting in."I watched from a wheelchair, newly crippled by polio, mesmerized as our nation took a few tentative steps along Freedom Road after being paralyzed by racial discrimination for centuries.It was a time when the n-word was not uncommon, when I was termed a "shut-in" and "an invalid confined to a wheelchair." And I too yearned not to be separate and unequal.And then Dr. King stood at the Lincoln Memorial and said, "I have a dream that my four little children will one day live in a nation where they will not be judged by the color of their skin but by the content of their character."Rotten segregation began to crumble.

But not for me or other people with disabilities. Most of us remained isolated by inaccessible architecture, minimal higher education and employment opportunities and a patronizing preference for segregation through custodial care."You know, being in a wheelchair is almost like being black," I sometimes thought. I was right. And I was wrong.A person of color and a person with a visible disability are both identifiable by appearance, of course. And I felt excluded, discriminated against not only because of lack of accessible opportunities but also because of perceptions based entirely on appearance: "Don't hire people in wheelchairs.

They're sick all the time."Even after I ventured out into the world and confronted prejudices generated by a visible disability, I understood no one would beat me, kick me out of a restaurant or deny me the right to vote. I had no understanding of the black experience. No one turned fire hoses on people with disabilities. Nor lynched us.But when African-Americans rose up and demanded to be heard, people with disabilities remained invisible. The lucky were supported by families. Others were warehoused in nursing homes or state institutions.King voiced his dream in 1963, and ten years later The Rehabilitation Act of 1973 provided the first step toward integration for people with disabilities.

Things became better with the passage of Americans with Disabilities Act in 1991, and we began to integrate ourselves into the educational sector, into businesses and professions, and even into the entertainment industry. And as more of us became visible, words and phrases like "confined to a wheelchair," "invalid" or "shut-in" began to disappear from the language.Today we remember Jim Crow, the lynchings, the riots, the bombs and the assassinations, and we celebrate the courage of Dr. Martin Luther King, Jr.I will join in, but I will also remember heroes whose names should be written in every history book -- advocates like Justin Dart, who worked tirelessly for the Americans with Disabilities Act; Wade Blank, who had been with King at Selma and moved on to found ADAPT; Ed Roberts, the father of the disability rights movement who fought hard for everything from curb cuts to access to higher education.There's work left, of course. And to paraphrase Dr. King, I say, "I have a dream that people with disabilities will one day live in a nation where they will not be judged by what they can or cannot do but rather by the content of their character."

I once found myself thoroughly bemused by amateur radio (ham radio). This was near the time of the Citizen's Band radio craze -- 10-4, good buddy -- but ham radio is an electron of another amperage. Ham radio requires a written technical test and a proficiency in Morse code.I received my license, and ultimately progressed (1980 was the year) to the top license -- Amateur Extra, which required Morse code sending and receiving skills at 20-words-per-minute. I loved Morse code operation. There was something exotic about tapping out a message on a low-powered transmitter and conversing with a person across the continent or on the other side of the world.About that time I met Wes, a physics professor at the University of Kansas who later went to work for a laboratory at Los Alamos. We conversed for years, always through Morse code, and we met in person several times. Wes died last year. I sent his widow my sympathy and sent a Christmas card last month. When she replied, she sent along the picture shown here, and an old QSL card* I had sent Wes. It brought back a lot of memories, all good.

Gary Presley

Contemplating wheelchairs, the Salk vaccine, anger, and empathy.

Download software to watch interview

By Gary Presley

'Tis good to have friends who are editors. Barry Basden of The Camroc Press Review has published an adaptation/condensation from my memoir, Seven Wheelchairs: A Life beyond Polio.I say "adaptation/condensation" because CPR word-limits at 550, and I am a verbose sort, To make a coherent narrative, I was forced to fiddle with a significant junk of text.Or to state it another way, the piece is not taken word-for-word from Seven Wheelchairs.

Read the piece on the Carmoc Press Review here ...The Part that Kept Me from Screaming

by Gary Presley

I recently had an email from Gary Presley, you may of read a couple of the posts earlier by him, and he is happy to exchange blog feeds as well. I hope you enjoy reading them:

The Dancing with Monsters blog presents interesting perception about disability in this world. In the most recent post, the author offers the opinion that "God values us and values our stories."About that I am not sure. I sometimes think God Is what was before the Big Bang and awaits us beyond the edge of Infinity.

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

I don't have an ounce of rhythm in my body but this bird sure does. This Cockatoo dances like there is no tomorrow. I get the feeling it takes him a while to wind down too, because he was still going when the music stopped.


Watch him dance

'My cerebral palsy is just another arbitrary feature, like eye colour'

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