CityNews.ca Staff

It's one of the most devastating diseases in the world, a silent thief that gradually robs patients of their ability to do all the things they once took for granted, from playing sports to simply going for a walk.

Canada has one of the highest rates of multiple sclerosis in the world, although experts still aren't exactly sure why. They do know it can affect a person's balance and leave them in a wheel chair. And there's no cure.

But now there may be some new hope and it's thanks to the remarkable determination of some patients not to give up - and an amazing invention out of Alberta. Sylvia Bauer is the former and she's putting the latter to good use.

It's called the WalkAide, a miniature computer that stimulates the muscles in the leg and allows some MS sufferers the chance to walk normally again.
"I developed drop foot," she explains. "It means that the muscles that make your foot and your muscles move don't work any more." She had to rely on large awkward braces to move around and getting anywhere was an agonizing chore.
And then she heard about WalkAide, a small device you wear around your legs. It teaches the computer to adapt to your normal gait.

It then electronically stimulates the muscles, forcing your legs to work as close to the way they used to as possible.
"We're artificially replacing muscles that don't work," outlines Yim Lok. She's an orthotist, a person who makes and fits appliances for people with weakened muscles.
And it's not just MS patients who benefit. The WalkAide can also help those with other mobility related ailments, like cerebral palsy or a stroke.




So how well does the WalkAide work? Bauer's braces are gone and she's able to traverse the floors of her home easily. She was also able to take part in the 5K MS Walk earlier this year, something she never would have dreamed possible before.
The device isn't cheap - it costs $4,500. But Bauer thinks it's worth every penny. "This gives you a sense of just living your life normally and not thinking about it every time," she relates.

Want to know more? Take a virtual walk here to find out if the device will work for you.

When a thank you letter arrived from The American Red Cross for the one-piece Nordic Walking Poles that were donated to Walter Reed Veterans Hospital by SkiWalking.com and The American Nordic Walking System it was one of hundreds of confirmations that one-piece Nordic Walking poles prove to be safer, lighter and much more durable than twist-locking adjustable length/telescoping/collapsible poles.

Glen Arbor, MI, April 15, 2009 ---- Nordic Walking instructor, running and ski coach, Pete Edwards, discovered five years ago that Nordic Walking Poles were not just for expert skiers deprived of snow, but doubled as an aid for those with balance and stability issues. He started volunteering to host free Nordic Walking Clinics at Multiple Sclerosis (MS), Parkinson's (PD) and Diabetes support group meetings. A couple years later he donated dozens of pairs of durable one-piece Nordic Walking poles to Walter Reed Veterans Hospital in Washington, DC. He has also shipped free Nordic Walking poles directly to injured soldiers returning from Iraq and Afghanistan after talking to their spouses and/or parents. Family members, doctors and physical therapists have been amazed by the improvement in posture, balance, stability and gate thanks to the use of Nordic Walking Poles in the correct lengths.For over 25 years Edwards has been coaching runners and skiers. His skiers have been ski walking and hill bounding with poles during the warmer months when snow could not be found.

After a knee injury ended his marathon running career, his Nordic Walking Poles saved the day – allowing Edwards to Nordic Walk and even Nordic Run (running with poles) pain free.Using the perfect length Nordic Walking Poles helps us to automatically walk with a super straight back - better walking posture is biomechanically a good thing. This improved walking posture when combined with the unique 4-Wheel-Drive type action of walking with poles radically reduces the stress to the shins, knees, hips and back. Nordic Walking is low impact and yet provides a highly effective workout - burning more calories and working more muscle groups than regular walking.Nordic Walking has been the fastest growing fitness activity in Europe for several years. Over seven million Europeans are walking with poles - in the city, in the country and up in the mountains. Walking with poles helps to burn more calories than regular walking, improves balance/stability, radically reduces the stress to the weight bearing joints and provides a workout for your upper body by engaging your arms and legs – a lot like cross country skiing.Nordic Walking’s winning combination of improved posture, a unique 4-Wheel-Drive type action and shock absorbing benefits are helping many individuals to walk comfortably again.

Nordic Walking Poles are helping individuals with balance issues, knee issues or new knees, hip issues or new hips, back issues (including those with rods in their back), weight issues, multiple sclerosis (MS), parkinson’s disease (PD), neuropathy, arthritis, bursitis, scoliosis, lumbar stenosis, fibromyalgia, post polio, osteoporosis, stroke recovery, cancer recovery and other limitations to walking. Nordic Walking poles are helping thousands of Americans get off the couch, successfully get outside, start walking safely and effectively launch much needed walking campaigns.Individuals that use canes and/or walkers often find that Nordic Walking Poles are much more comfortable and stable than their canes or walkers. Individuals that find pushing a shopping cart comfortable find that Nordic Walking poles provide even more support and much improved balance, stability and versatility. The feedback from amputees, individuals with head trauma and others with balance issues is consistent – the poles really do improve balance and stability.From a fitness standpoint, walking with the correct length poles and proper technique can burn up to 40% more calories than regular walking. Walking with Nordic Walking Poles can turbo charge any walking campaign.Real Nordic Walking Poles are equipped with comfortable fingerless glove type straps, durable metal tips (for use on trails, the beach, snow and ice) and special rubber tips/paws that are removable and designed for use on pavement and other hard surfaces. All poles from http://www.skiwalking.com/ and The American Nordic Walking System are also equipped with patented straps (patented by the Salomon Ski Company).Thanks to the efforts of Pete Edwards, SkiWalking.com and The American Nordic Walking System, individuals of All ages and All fitness levels, are safely unlocking the calorie burning and aerobic benefits of walking, hiking, trekking and running with poles. These durable one-piece poles prove to be safer, lighter and much more durable than cheap twist-locking adjustable length/telescoping/collapsible poles. Nordic Walking Poles from SkiWalking.com and The American Nordic Walking System also includes a free Nordic Walking DVD and there are a variety of exertion options to choose from regardless of age, balance and/or fitness level.

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.

By Jessica J. Burchard
The Winchester Star


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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

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.”

12 Feb 2009

Researchers from Northwestern University's Feinberg School of Medicine appear to have reversed the neurological dysfunction of early-stage multiple sclerosis patients by transplanting their own immune stem cells into their bodies and thereby "resetting" their immune systems.



"This is the first time we have turned the tide on this disease," said principal investigator Richard Burt, MD, chief of immunotherapy for autoimmune diseases at the Feinberg School. The clinical trial was performed at Northwestern Memorial Hospital where Burt holds the same title.

The patients in the small phase I/II trial continued to improve for up to 24 months after the stem cell transplant and then stabilised. They experienced improvements in areas in which they had been affected by multiple sclerosis including walking, ataxia, limb strength, vision and incontinence. The study will be published in the March issue of the Lancet Neurology.

Multiple sclerosis (MS) is an autoimmune disease in which the immune system attacks the central nervous system. In its early stages, the disease is characterised by intermittent neurological symptoms, called relapsing-remitting MS. During this time, the person will either fully or partially recover from the symptoms experienced during the attacks. Common symptoms are visual problems, fatigue, sensory changes, weakness or paralysis of limbs, tremors, lack of coordination, poor balance, bladder or bowel changes and psychological changes.

Within 10 to 15 years after onset of the disease, most patients with this relapsing-remitting MS progress to a later stage called secondary progressive multiple sclerosis. In this stage, they experience a steady worsening of irreversible neurological damage.

The 21 patients in the trial, ages 20 to 53, had relapsing-remitting multiple sclerosis that had not responded to at least six months of treatment with interferon beta. The patients had had MS for an average of five years. After an average follow-up of three years after transplantation, 17 patients (81 percent) improved by at least one point on a disability scale. The disease also stabilized in all patients.

In the procedure, Burt and colleagues treated patients with chemotherapy to destroy their immune system. They then injected the patients with their own immune stem cells, obtained from the patients' blood before the chemotherapy, to create a new immune system. The procedure is called autologous non-myeloablative haematopoietic stem-cell transplantion.

"We focus on destroying only the immune component of the bone marrow and then regenerate the immune component, which makes the procedure much safer and less toxic than traditional chemotherapy for cancer," Burt said. After the transplantation, the patient's new lymphocytes or immune cells are self-tolerant and do not attack the immune system.

"In MS the immune system is attacking your brain," Burt said. "After the procedure, it doesn't do that anymore."

In previous studies, Burt had transplanted immune stem cells into late-stage MS patients.

"It didn't help in the late stages, but when we treat them in the early stage, they get better and continue to get better," he said.

"What we did is promising and exciting, but we need to prove it in a randomised trial," Burt noted. He has launched a randomised national trial.

(Source: Northwestern University : Burt R. Stem cell therapy for patients with multiple sclerosis failing interferon A randomised study. Lancet Neurology. : February 2009)

By BRITTNI REINERTSEN

Bellevue Reporter Contributor Jan 12 2009, 5:30 PM · UPDATED

Pushing Boundaries, Washington’s only exercise-therapy center for people with paralysis, is gearing-up to introduce the state’s first robotic walking system, the Lokomat, early next year. The machine will be available for public use and may help those with paralysis regain strength and, in some cases, learn to walk again.
The Redmond-based facility held a luncheon at Bellevue’s Meydenbauer Center Nov. 6 to raise funds for the much-anticipated machine. Together with friends, family, and clients, Pushing Boundaries raised close to $90,000. The total cost for a Lokomat is $300,000.

“It (the luncheon) turned out really well, better than we could have hoped for,” said Shawna Hanson, the Event and PR Coordinator for Pushing Boundaries.
Featured at the event were client testimonies, a video describing the machine and its use, as well as a speech from co-founder Sharon Northrup.
“Pushing Boundaries started as a result of an injury Allan (her husband) sustained while we were both driving over I-90 seven years ago,” Northrup explained. The accident left Allan paralyzed from the mid-chest down.
They decided to move to San Diego where their daughter had discovered a new type of exercise therapy. Eventually, Sharon and Allan returned to Washington and founded a similar facility.
The mission of Pushing Boundaries is to improve the lives and health of people with paralysis through intensive and creative exercise-therapy programs, whether the condition is recent or long term.
The Lokomat is an example of the creative therapy that Pushing Boundaries emphasizes that could reverse “learned non-use” in affected muscle groups.
Here’s how it works. A person strapped into a harness is suspended over a treadmill, where they are attached to robotic sensors. They help move the legs in a natural walking pattern that is even, consistent and can be sustained over long periods of time.
According to the Rehabilitation Institute of Chicago, it is believed that this repetitive walking pattern helps the brain and spinal cord work together to re-route neural signals that may have been damaged due to illness or injury. The resulting “re-connection” helps the body regain mobility that has been lost due to injury, stroke or other neurological disorders such as Multiple Sclerosis.
The institute, which began clinical trials of this therapy in March 2002, claims other benefits that may include regained muscle strength and improved circulation. The weight-bearing nature of the machine may also help strengthen bones at risk for osteoporosis.
“Locomotion therapy is becoming something that’s more widely accepted,” said Hanson. “Doctors are learning that there are things that can build around the site of the injury to make a new connection.”
Jerry Daniels, an exercise therapist and certified personal trainer at Pushing Boundaries, explained how exercise therapy, like gait-training, helps to improve mobility. He compared the spine to a “super-highway.”
“Just because the highway’s been choked off, doesn’t mean we can’t go around the back roads. The body is always trying to fix itself; it wants to get better! If you help it by being active, it will work with you.”
Devin Givens, a young man and client at Pushing Boundaries, is an example of this concept.
In August 2007, Givens was in an all-terrain vehicle accident while vacationing with his family in Canada. Despite wearing all the required safety gear, the crash left him with three broken vertebrae. Luckily, Givens’ spinal cord was not severed and he maintained sensation throughout his body. However, he was left unable to walk.
“Virtually, he had a little bit of movement and a lot of spasms,” said his mother, Shannon Vernerey.
Both Givens and his mother were told that what mobility he could regain in the first 12 to 18 months following his accident would be it.
“I was told by the doctor in Canada that there was nothing we could do for him,” Vernerey said.
Then in December 2007, they came to Pushing Boundaries. There, Givens and his mother encountered an optimistic atmosphere where the vision is to inspire hope for those living with paralysis to do things they never thought possible.
At first, Givens could only stabilize himself while sitting on the edge of a mat.
“Today, he is standing at the parallel bars and taking some steps. He’s still regaining movement, he hasn’t plateaued at all,” said Vernerey.
She and Givens look forward to the boundaries they will continue to break through when the Lokomat arrives.
“As soon as I get on it, I’ll take off. Connections will be made,” said Givens.
Vernerey said she is totally convinced that the machine will help her son.
“With the success of this machine, how it helps the body reconnect and regenerate the nervous system. … I am totally 100 percent believing that he will walk again in his lifetime. There isn’t one doubt in my mind.”
William Holmes is another Pushing Boundaries client who is “psyched” for the Lokomat to arrive.
“You get to exercise. It’s going to be amazing! To have something that’s going to walk you. I mean, I haven’t walked in seven and a half months,” Holmes said.
He became paralyzed from the chest down as a result of a motorcycle accident along Seattle's Lake City Way last February.
Mike Buckel, one of Holmes’ trainers, is looking forward to the Lokomat as an alternative method of gait-training exercise. Clients currently practice walking on a light gait treadmill where they rely on trainers to set the pace and place their feet. The process is often slow and difficult.
“I think it’s going to be so much easier having a machine that walks somebody with the proper gait pattern rather than us doing it in cadence. Five minutes of doing that thrashes your body,” Buckel explained.
Another benefit of having a Lokomat at Pushing Boundaries is public access.
“We identified that this type of therapy was not available to anyone in the state of Washington,” said Tricia Lazzar, director of Pushing Boundaries.
“That’s the benefit of having it here; anybody who has the ability to go through gait-training would have the opportunity to use it,” she said.
Lazzar explained that there is a Lokomat in Portland at the Oregon Health Sciences University. However, it is used for stroke rehabilitation and not available for public use.
There will be no extra cost for client’s to use the Lokomat at Pushing Boundaries. An hourly fee of $80, some of which can be subsidized by the facility, includes the use of all equipment during one-on-one therapy sessions with a qualified trainer. Clients are required to come in for two-hour sessions at a minimum of two days a week.
“Bringing the Lokomat to Pushing Boundaries will impact literally hundreds of people in the state of Washington that are affected by paralysis each year,” Northrup explained at the luncheon.
The numbers alone reinforce her statement. According to Northrup, there are almost two spinal cord injuries a day in Washington state.
Northrup ended her speech by saying that whether "we want to believe it or not, tomorrow, the next day and every day there will be people who have things happen to them who will need us.
“We cannot change how many are injured,” she said, “but we can change how many we can help.”
For more information on the Lokomat or to make an appointment for a tour of the Pushing Boundaries facility, visit its Web site at www.pushing-boundaries.org or send an e-mail to info@pushing-boundaries.org.
Brittni Reinertsen is a student in the University of Washington Department of Communication News Laboratory.

One of the most pernicious aspects of multiple sclerosis (MS) - its sheer unpredictability - may finally be starting to yield to advanced medical imaging techniques.
Researchers from Washington University School of Medicine in St. Louis report online in the journal Neurology that an approach known as magnetic resonance diffusion tensor imaging (DTI) allowed them to estimate three months in advance the chronic effects of inflammation of the optic nerve. The condition occurs most often as a result of MS, a neurodegenerative disorder that can present with an extremely broad variety of symptoms that range from vision loss and other sensory damage to muscle weakness, spasticity or paralysis to depression, sleep loss or incontinence. MS affects an estimated 500,000 Americans.
"We see this as part of a battery of tests we hope to give patients within the next decade to help our clinical assessment and tailor it to an optimal treatment," says lead author Robert T. Naismith, M.D., assistant professor of neurology and a staff physician at Barnes-Jewish Hospital. "It may also help further refine our basic understanding of MS in terms of expanding our insights into where and how damage occurs and why it can affect patients differently."
Scientists believe MS results from misdirected immune system attacks against the nervous system. Symptoms occur in bouts that vary unpredictably in nature, severity, duration and frequency. Symptoms of optic nerve inflammation, known as optic neuritis, include loss of vision, blurring or fogginess and pain in the affected eye.
Regular MRI scans can detect optic neuritis but offer no information on its severity and potential lasting consequences for a patient's vision.
Currently in use clinically to detect and follow up on strokes, DTI uses a rapid series of MRI scans to track water diffusion in tissue. Noting that inflammation and the cell damage it causes would likely alter water diffusion in the affected tissues, Naismith and his colleagues hypothesized that this information might allow them to assess the severity and potential for lasting damage of MS flare-ups. Over the past five years, the new paper's senior authors, Sheng-Kwei Song, Ph.D., associate professor of radiology, and Anne Cross, M.D., professor of radiology, did much of the quantitative work in animal models of MS. The new data, based upon this successful collaborative history, are the first to show that DTI can produce potentially useful predictive information in humans.
For the study, researchers used DTI to image the optic nerves of 12 healthy volunteers, 12 patients who had begun to suffer from optic neuritis within the past month and 28 patients with a history of earlier outbreaks. They gave participants with optic neuritis or a history of it detailed assessments of their visual health, including tests of visual acuity and the thickness and conductivity of their optic nerves.
In the healthy subjects, DTI scans showed that the water diffusion along the length of the subjects' optic nerves, a characteristic known as axial diffusivity, averaged about 1.66 micrometers squared per millisecond. In three patients with acute optic neuritis, those levels went down as much as 0.45 micrometers squared per millisecond.
"As the inflammation breaks down the structure of the axons or branches of the optic nerves, the normal water diffusion in this direction is impeded," Naismith explains. "After several months, though, the debris is cleared away, and this value and another characteristic known as radial diffusivity then start to increase."
In acute patients, the initial decrease in axial diffusivity brought on by optic neuritis correlated with decreased sensitivity to visual contrast one month and three months later. In patients with a history of optic neuritis, the increase in radial diffusivity was a good predictor of lower scores on several tests of visual health. Scientists plan to assess the acute patients again one year after the onset of symptoms to see if the scan results continue to be predictive.
Researchers are currently working to expand the approach to assess MS attacks in the brain and spinal cord.
"The optic nerve was our proof of concept, because it's structurally a very simple tract with all the nerves going one way, like a one-way street," he says. "The next step is taking the technique into the brain and spinal cord, where there are many different streets crossing. Measuring damage and correlating it to dysfunction will be more complex as a result."
http://www.medicine.wustl.edu/

Speech-language pathology is the study of disorders that affect a person’s speech, language, cognition, voice, swallowing (dysphagia) and the rehabilitative or corrective treatment of physical and/or cognitive deficits/disorders resulting in difficulty with communication and/or swallowing. Speech-language pathologists (SLPs) or Speech and Language Therapists (SLTs) address people’s speech production, vocal production, swallowing difficulties and language needs through speech therapy in a variety of different contexts including schools, hospitals, and through private practice.

Communication includes speech (articulation, intonation, rate, intensity), language (phonology, morphology, syntax, semantics, pragmatics), both receptive and expressive language (including reading and writing), and non-verbal communication such as facial expression and gesture. Swallowing problems managed under speech therapy are problems in the oral, laryngeal, and/or pharyngeal stages of swallowing (not oesophageal).

Depending on the nature and severity of the disorder, common treatments may range from physical strengthening exercises, instructive or repetitive practice and drilling, to the use of audio-visual aids and introduction of strategies to facilitate functional communication. Speech therapy may also include sign language and the use of picture symbols (Diehl 2003).

The practice is called:

Speech-language pathology (SLP) in the United States and Canada
Speech and language therapy (SLT) in the United Kingdom, Ireland and South Africa
Speech pathology in Australia
Speech-language therapy in New Zealand
Other terms in use include speech therapy, logopaedics and phoniatrics.

Contents
1 Scope of practice
2 Professional roles
3 Education
4 Methods of assessment
5 Patients/clients
6 Place of work
7 Colleagues
8 See also
9 External links




Scope of practice
The practice of speech-language pathology involves:

Providing prevention, screening, consultation, assessment and diagnosis, treatment, intervention, management, counseling, and follow-up services for disorders of:
speech (i.e., phonation, articulation, fluency, resonance, and voice including aeromechanical components of respiration);
language (i.e., phonology, morphology, syntax, semantics, and pragmatic/social aspects of communication) including comprehension and expression in oral, written, graphic, and manual modalities; language processing; preliteracy and language-based literacy skills, including phonological awareness;
swallowing or other upper aerodigestive functions such as infant feeding and aeromechanical events (evaluation of esophageal function is for the purpose of referral to medical professionals);
cognitive aspects of communication (e.g., attention, memory, problem solving, executive functions).
sensory awareness related to communication, swallowing, or other upper aerodigestive functions.
Establishing augmentative and alternative communication (AAC) techniques and strategies including developing, selecting, and prescribing of such systems and devices (e.g., speech generating devices.)
Providing services to individuals with hearing loss and their families/caregivers (e.g.,auditory training; speechreading; speech and language intervention secondary to hearing loss; visual inspection and listening checks of amplification devices for the purpose of troubleshooting, including verification of appropriate battery voltage).
Screening hearing of individuals who can participate in conventional pure-tone air conduction methods, as well as screening for middle ear pathology through screening tympanometry for the purpose of referral of individuals for further evaluation and management.
Using instrumentation (e.g., videofluoroscopy, EMG, nasendoscopy, stroboscopy, computer technology) to observe, collect data, and measure parameters of communication and swallowing, or other upper aerodigestive functions in accordance with the principles of evidence-based practice.
Selecting, fitting, and establishing effective use of prosthetic/adaptive devices for communication, swallowing, or other upper aerodigestive functions (e.g., tracheoesophageal prostheses, speaking valves, electrolarynges). This does not include sensory devices used by individuals with hearing loss or other auditory perceptual deficits.
Collaborating in the assessment of central auditory processing disorders and providing intervention where there is evidence of speech, language, and/or other cognitivecommunication disorders.
Educating and counseling individuals, families, co-workers, educators, and other persons in the community regarding acceptance, adaptation, and decision makes about communication, swallowing, or other upper aerodigestive concerns.
Advocating for individuals through community awareness, education, and training programs to promote and facilitate access to full participation in communication, including the elimination of societal barriers.
Collaborating with and providing referrals and information to audiologists, educators, and health professionals as individual needs dictate.
Addressing behaviors (e.g., perseverative or disruptive actions) and environments (e.g., seating, positioning for swallowing safety or attention, communication opportunities) that affect communication, swallowing, or other upper aerodigestive functions.
Providing services to modify or enhance communication performance (e.g., accent modification, transgendered voice, care and improvement of the professional voice, personal/ professional communication effectiveness).
Recognizing the need to provide and appropriately accommodate diagnostic and treatment services to individuals from diverse cultural backgrounds and adjust treatment and assessment services according.

Professional roles
Speech-language pathologists serve individuals, families, groups, and the general public through a broad range of professional activities. They:

Identify, define, and diagnose disorders of human communication and swallowing and assist in localization and diagnosis of diseases and conditions.
Provide direct services using a variety of service delivery models to treat and/or address communication, swallowing, or other upper aerodigestive concerns.
Conduct research related to communication sciences and disorders, swallowing, or other upper aerodigestive functions.
Educate, supervise, and mentor future speech-language pathologists.
Serve as case managers and service delivery coordinators.
Administer and manage clinical and academic programs.
Educate and provide in-service training to families, caregivers, and other professionals.
Participate in outcomes measurement activities and use data to guide clinical decision making and determine the effectiveness of services provided in accordance with the principles of evidence-based practice.
Train, supervise, and manage speech-language pathology assistants and other support personnel.
Promote healthy lifestyle practices for the prevention of communication, hearing, swallowing, or other upper aerodigestive disorders.

Education
In the UK( United Kingdom) , SLTs undertake a three to four year degree course devoted entirely to the study of clinical language sciences and communicative disorders. This qualifies them to work in any of the three main clinical areas. The course, which varies according to university, includes intensive study of core theoretical components underpinning competence to practice , Linguistics, Psychology and Medical science, in addition to the study of a range of communicative disorders in children and adults. Students are also expected to become familiar with a range of policies, processes and procedures relevant to working in different contexts, including health and education. The course is very demanding, and is assessed via coursework, exams and clinical placement. Some universities require students to assess and diagnose an ‘unseen client’ prior to completing their degree course; all require the completion of a pilot study related to the field of Speech and Language Therapy. Throughout the course, students undertake a variety of clinical placements in which their ability to practise is continually assessed. All courses require students to complete a certain amount of hours of clinical placement, although the structure of placement differs from course to course.

Upon qualifying SLT’s enter the profession as a newly-qualified practitioner. The recommended career course is that they then achieve a number of competencies, which qualify them to work autonomously. The Royal College of Speech and Language Therapists, the professional body representing Speech and Language Therapists in the UK, provides a framework of competencies which therapists are expected to achieve within 12–18 months of beginning clinical practice. Access to supervision during this period varies from trust to trust, and each individual therapist is expected to provide documentary evidence of competencies achieved to a senior colleague (usually a manager) who determines whether a therapist meets the required criteria for admission to the ‘full register’.

Speech and Language Therapists in the UK are required by law to register with the Health Professions Council, a regulatory body governing a range of health professions. The Health Professions Council has the power to discipline members who do not meet the rigorous standards for effective and safe clinical practice, and may ’strike off’ or deregister members who fail to maintain these standards.

In the United States, Speech Language Pathology practice is regulated by the laws of the individual states. However, by 2006, the minimal requirements to be a certified SLP member of the American Speech-Language Hearing Association were: a graduate degree in Speech-Language Pathology, which typically entails 2 years of post graduate work; a completed clinical fellowship year, which is generally employment for a year while supervised by a practicing SLP who is also ASHA certified; and passing the Praxis Series examination. The graduate degree work to acquire a Master’s in Speech-Language Pathology is rigorous and demanding, requiring many hours of supervised clinical practica, and intensive didactic coursework in medical sciences, phonetics, linguistics, phonology, scientific methodology, and other subjects.

Certification by ASHA is noted as carrying one’s “C”s. (Certificate of Clinical Competence) It is noted after an SLP’s name as: CCC-SLP.

In Australia, Speech Pathologists either undertake a four year undergraduate degree, or a two year Masters degree to qualify. These dual pathways are considered by Speech Pathology Australia to produce equally prepared graduates. To be eligible for optional membership of Speech Pathology Australia, students must study in one of the accredited courses outlined on their website. Speech Pathology degrees in Australia vary in curriculum, but always include streams teaching anatomy and physiology, professional practice, communication and swallowing disorders, and often some elementary psychology and audiology. Most include no or minimal elective subjects. All degrees include a heavy clinical component, and many also include a research component in final year. Once graduated, students become fully qualified Speech Pathologists and are eligible for any Level 1 position, without the need for an internship or general examination. Registration is only required in the state of Queensland, and membership of the professional organization is optional, although it is encouraged.


Methods of assessment
There are separate standardized assessment tools administered for infants, school-aged children, adolescents and adults. Assessments primarily examine the form, content, understanding and use of language, as well as articulation, and phonology. Oral motor and swallowing assessments often require specialized training which includes the use of bedside examination tools and endoscopic/modified barium radiology procedures.

Individuals may be referred to an SLP for the following: Traumatic brain injury; Stroke; Alzheimer’s disease and dementia; Cranial nerve damage; Progressive neurological conditions (Parkinson, ALS, etc); Developmental delay; Learning disability (speaking and listening); Autism Spectrum Disorders (including Asperger Syndrome); Genetic disorders that adversely affect speech, language and/or cognitive development; Injuries due to complications at birth; Feeding and swallowing concerns; Craniofacial anamolies that adversely affect speech, language and/or cognitive development; and Augmentative Alternative Communication needs.

There are myriad Speech-Language Assessment tools used for chidren and adults, depending on the area of need.


Patients/clients
Speech and language therapists work with:

Babies with feeding and swallowing difficulties
Children with mild, moderate or severe:
learning difficulties
physical disabilities, language delay
specific language impairment
specific difficulties in producing sounds (including vocalic r and lisps)
hearing impairment
cleft palate
stammering
autism/social interaction difficulties
dyslexia
voice disorders
Adults with eating and swallowing and/or communication problems following
stroke
head injury (Traumatic brain injury)
Parkinson’s disease
motor neuron disease
multiple sclerosis
Huntington’s disease
dementia
cancer of the head, neck and throat (including laryngectomy)
voice problems
mental health issues
learning difficulties, physical disabilities
stammering (dysfluency)
hearing impairment
transsexual women seeking voice therapy
In the United States, the cost of speech therapy for a child younger than three years old is likely covered by the state early intervention (zero to three) program.

In Britain, the majority of Speech and Language therapy is funded by the National Health Service (and increasingly, by partners in Education) meaning that initial assessment is available cost-free to all clients at the point of service, regardless of age or presenting problem. The large numbers of referrals contribute to high caseloads and long waiting lists, although this differs from area to area. To meet the needs of many of these clients, it has become necessary for many services to focus heavily on training and consultative models of service provision. The number of hours of direct therapy available to clients varies widely from trust to trust and most areas operate strict guidelines for prioritisation to meet the high clinical demand.


Place of work
Speech and language therapists work in community health centres, hospital wards and outpatient departments, mainstream and special schools, further education colleges, day centers and in their clients’ homes. Some now work in courtrooms, prisons and young offenders’ institutions.

Some speech and language therapists who work independently will see children and adults in their own homes, and may offer appointments on a Saturday.


Colleagues
SLTs/SLPs work closely with others involved with the client, for example difficulties with eating and drinking may also involve an occupational therapist. Speech and language therapists also work closely with parents and caregivers and other professionals, such as audiologists, teachers, nurses, dietitians, physiotherapists, and doctors.

The science behind stem cell treatment is still in the early stages
“Patients with debilitating diseases such as multiple sclerosis and Parkinson’s risk being exploited by websites offering expensive stem-cell treatments.” The Times reported. It said that a study had investigated the websites of 19 companies that offer such therapies. Researchers found that most make inflated or over-optimistic claims about the benefits, are not backed by evidence and make little or no mention of the risks involved.

This study highlights the extent of the problem of direct-to-consumer advertising of stem cell therapies.

There are risks in buying anything claiming to have a health benefit over the internet. Stem cell treatment offered by seemingly legitimate clinics is no different. Stem cells are an accepted treatment for blood cancers, but this science is still in its infancy in terms of neurological treatments. The MS Society warns there is no evidence yet that the treatment repairs multiple sclerosis damage.

Anyone considering this sort of treatment is strongly recommended to discuss it with their GP first. The Department of Health has recently released a warning on unproven stem cell treatment.

Where did the story come from?

Darren Lau and colleagues from the Department of Public Health Sciences and Faculty of Law at the University of Alberta in Edmonton, Canada carried out this research. The work was funded by a grant from the Stem Cell Network. The study was published as correspondence in the peer-reviewed science journal, Cell Stem Cell.

What kind of scientific study was this?

The researchers say despite the fact that stem cell medicine is in an immature state, there is still an ‘early market’ for the supposed stem cell therapies, and people are beginning to buy the therapies directly. They believe that direct-to-consumer advertising through the internet is likely to play an important role in how this market develops. This cross-sectional descriptive analysis was aimed at answering three specific questions:

What sorts of therapies are being offered?
How are they portrayed?
Is there clinical evidence to support the use of these therapies?
To investigate this, the researchers took a ‘snapshot’ of online stem cell clinics in August 2007, by carrying out a Google search using the terms ‘stem cell therapy’ or ‘treatment’. This search returned 19 websites claiming to use stem cells to treat the disease. The researchers took the clinics’ uses of the ‘stem cell’ label at face value, meaning that they did not assess if the clinics were truly offering therapies with stem cells.

The researchers noted that the sites often offered other services including cosmetic treatments of otherwise healthy patients or health ‘enhancements’. Importantly, these clinics also gave information on how the stem cells were given to patients.

They also say that it is usually difficult to sort the stem cells from other cells and that it is therefore likely that the ‘stem cell therapies’ referred to by the websites contain numerous other cells in addition to the stem cells.

What were the results of the study?

The researchers found that the most commonly provided stem cells were adult and taken from the patient’s own body (nine websites or 47%). These were followed by stem cells sourced from a foetus, cord blood or embryo. The stem cells were most often obtained from the patient’s bone marrow (seven sites or 37%) and/or blood (five sites or 26%). Some websites did describe getting the stem cells from patient fat, blood or marrow donors, aborted foetuses, patient’s skin, animal tissues and human placental tissue.

The websites claimed that treatments were most commonly administered by infusion into cerebrospinal fluid by lumbar puncture (six sites or 32%). Injection into a vein was equally common. Four websites described procedures for injecting the stem cells into deep body cavities, such as the space around the brain or by injection directly into the spinal cord.

The conditions treated were diverse, including neurological conditions or brain diseases such as multiple sclerosis, stroke, Parkinson’s disease, spinal cord injury and Alzheimer’s disease. The sites also claimed to treat allergies and congenital diseases, mainly cerebral palsy, autism and Duchenne muscular dystrophy.

Regarding the portrayal of risks and benefits, all 19 websites advertised improvement in the disease state as a benefit of therapy and most (14 or 74%) of the sites did not mention particular risks.

The last part of the study was to look for the evidence supporting stem cell treatments. For this, the researchers performed a database search (Pubmed) in July 2008. They looked for human studies that reported the clinical effects of stem cell therapies for any neurological or cardiovascular conditions mentioned 10 or more times by the websites. This search provided a range of trials (mostly randomised controlled trials) of low-level evidence (i.e. varying quality) for neurological conditions and four systematic reviews with meta-analyses for stem cell treatments after heart attack.

All of the systematic reviews reported a small but statistically significant advantage of about 2-3% in a measure of heart function, but the researchers say this was of uncertain clinical importance. For stem cell therapies for multiple sclerosis, Parkinson’s disease, stroke, Alzheimer’s disease, and spinal cord injury they found that the treatments offered on stem cell websites are generally unsupported by the clinical evidence.

What interpretations did the researchers draw from these results?

The researchers concluded that direct-to-consumer portrayal of stem cell medicine is optimistic and unsupported by published evidence. They also suggest that the results have other implications including:

Providers are making inaccurate claims in their direct-to-consumer advertising.
Importantly, patients may not be receiving sufficient and appropriate information and may be being put at increased risk.
Clinics may also be contributing to a public expectation that exceeds what this field of research can reasonably achieve.
What does the NHS Knowledge Service make of this study?

The researchers mention some limitations to the methods that they used to collect the data:

The information available from websites may not be the same as the information actually shared with patients in the clinic.
The overall data was collected from a diverse range of clinics. The results cannot therefore be used to evaluate the claims of any particular clinic.
The researchers did not directly assess the accuracy of the websites’ claims by analyzing the results of treatment they had carried out.
These are valid points. The researchers also say that even if improvements had occurred, it would be impossible to say with confidence that these were due to the treatment. If on the other hand the treatments did not work, then patients would have been subjected to inappropriate risk and the cost of the treatment. The average cost of a course of therapy among the four websites that mentioned costs was $21,500, excluding travel and accommodation for patients and caregivers.

There are well-publicised dangers in buying anything claimed to have a health benefit over the internet. Stem cell treatment offered by seemingly legitimate clinics is no different, especially considering the various sources of the stem cells, the deeply invasive methods in which they can be delivered and the fact that this science is still in its early stages.

New guidelines have just been released by the International Society for Stem Cell Research (ISSCR).

A patient handbook is included that also lists some of the claims made by the websites, those that patients should interpret with caution.

A breakdown in a reaction between immune cells and blood vessels in the brain appears to play a key role in epilepsy, Italian researchers said on Monday.

The discovery could mean that some modern antibody-based drugs designed to modify the immune system used in other diseases may one day help fight the debilitating disorder.

A study of mice showed how immune cells sticking to blood vessels in the brain caused inflammation that contributed to epileptic seizures, Gabriela Constantin of the University of Verona in Italy and colleagues reported.

The finding could lead to new treatments to prevent the condition that affects about 1 percent of the general population worldwide, said Constantin, who led the study published in the journal Nature Medicine.

"This mechanism was not previously suspected in epilepsy," she said in a telephone interview.

Epilepsy is considered incurable but medicines can control seizures in most people with the common neurological disorder, although sometimes they can have severe side effects.

Many seizures -- which are caused by excessive electrical activity in the brain -- involve loss of consciousness, with the body twitching or shaking. People who have more than one seizure are considered to have epilepsy.

The researchers found that during a seizure the brain released a chemical that caused the white blood cells, or leukocytes, to stick to blood vessels. The immune cells protect the body from threats such as bacteria, viruses, and infections.

But when these immune cells stuck to the brain blood vessels they caused damage by releasing molecules that caused inflammation and contributed to seizures in mice, Constantin said.

"We found a lot of inflammation in this process in the generation of a new seizure," she said.

Mice that received monoclonal antibodies to block the immune cells from sticking to blood vessels had a dramatic reduction of seizures, in some cases 100 percent, Constantin said.

The treatment worked in a similar way to Elan Corp Plc's (ELN.I: Quote, Profile, Research, Stock Buzz) multiple sclerosis drug Tysabri and Genentech Inc's (DNA.N: Quote, Profile, Research, Stock Buzz) Raptiva for psoriasis, she added.

This means these kinds of drugs might also one day be used to treat epilepsy and the findings could also lead to new anti-inflammatory treatments for epilepsy, she said.

"We predict other inflammatory drugs can work and be discovered for use in humans," she said. "We have preliminary data on other inflamatory mechanism."

UK’s leading provider of private outpatient and community Neurological Physiotherapy, look forward to seeing you at the open day for their new clinic at ...

The Oxford Centre for Enablement (OCE) on the
12th February 2009
10am – 4pm
Drop in at your convenience

We hope you will be able to pop in during your busy day for some light refreshments and a chat, to learn more about how PhysioFunction helps clients with:-
Stroke, Spinal Injury, Head Injury, Multiple Sclerosis, Parkinson’s Disease and other Neurological conditions, to maximise their physical independence.

· Our team of expert Neurological Physiotherapists will be on hand to answer your questions
· Demonstrations of some innovative technology – Functional Electrical Stimulation, the Saeboflex hand retrainer and Kitcool in action
· Talk to current clients about how they have maximised their independence with our help
· Book a talk or demonstration for your practice while you are with us

We look forward to seeing you on the day.

Physiofunction Ltd, 50 High Street, Long Buckby, Northants. NN6 7RD Registered Office as aboveRegistered in England and Wales No. 4878929 Tel: 0800-043-0327 Fax: 0871-661-3008 Mob: 07798-780364 http://www.physiofunction.co.uk/

MANSFIELD -- He's 67 and recovering from a stroke, but Joe Lakes bowls, boxes and plays golf.


Since the Nintendo Wii was introduced into the occupational therapy program at MedCentral/ Mansfield Hospital, manager Trey Counts said patients have benefited in a variety of ways while enjoying familiar sports all year long.

"The Wii is being used more and more in the rehab setting," Counts said. "We have a lot of patients who have a history of playing sports and being active, so it's nice to be able to offer this to them," Nintendo says on its Website.

The Wii is an interactive videogame system.

"A distinguishing feature of the console is its wireless controller, the Wii Remote, which can be used as a handheld pointing device and detect movement in three dimensions."

Medical News Today reported Wii is being used for rehabilitation in hospitals around the country.

"You have to do the majority of the movements involved in the real-life activity," Counts said. "There are buttons involved, so it's not exactly the same as in real life, but it can become very engaging."

The occupational therapy department, which treats those with head injuries, multiple sclerosis, Parkinson's, amputations, etc., currently offers 10 different games. Counts said they plan to offer the Wii Fit as soon as one becomes available for purchase.

"Everyone seems to be sold out of them," he said. "These games help the patients work on endurance, balance and range of motion. Some games involved cognitive skills, like sequencing, memory and keeping score."

Lakes said he had a stoke on Nov. 1, which impaired the left side of his body.

"I'm just starting to get feeling back in there, but I had to learn how to balance myself all over again," the Mansfield man said. "The Wii has been great for that. I've tried the bowling and the boxing. With bowling, if you lunge forward too much that can throw off your balance."

Lakes said using the Wii was not difficult.

"Plus, it adds a little bit of fun," he said.

Counts said he believes those as young as 3 and as old as 90 would easily be able to pick up the skills.

"We use these in the rehab stage and have gotten a lot of positive feedback," he said. "We can choose the games based on their goals, but also to get them back into their old habits. If they like to play golf, we can have them play the Wii golf game to get some of those skills back. It's fun, and they don't even realize they're working on balance and endurance. I mean they'll really get fatigued playing some of these."

Occupational therapist Charles Prinz said the Wii doesn't take away from other activities.

"This is just an addition here," he said. "It just makes things a little easier on us. A bowling simulation makes it easier because in the gym, we'd have to have one of our staff members there to set back up the pins and retrieve the ball. Now this frees up someone to do something else."

Prinz added the Wii is not forced on anyone.

"If someone doesn't like sports, then we wouldn't offer this to them," he said. "They'll spend anywhere from 15 minutes to an hour on here. Everyone really seems to enjoy it."

KOCHI: A team of doctors at the Lourdes Hospital here claim to have successfully implanted the first intrathecal baclofen pump in a patient in the State. Headed by Bobby Varkey Maramattom, Head of the Department of Neurology and Interventional Neurology, the team employed the new intrathecal baclofen (ITB) therapy to bring relief to the patient.

According to doctors, ITB therapy is a treatment for individuals with severe spasticity – tight, stiff muscles, which can be a symptom of cerebral palsy, multiple sclerosis, brain injury, spinal cord injury or stroke.

It delivers a medication called baclofen directly to the intrathecal space where fluid grows around the spinal cord. Dr. Varkey says the medication is administered in small doses using the SynchroMed programmable pump, which is placed under the skin of the abdomen and connected to a catheter.

The pump and catheter deliver baclofen directly to the spinal fluid in miniscule doses, where it is most effective.

Doctors say that SynchroMed is the only surgically placed drug infusion system that can be programmed from outside body.

When necessary, a clinician uses an external programmer to adjust the drug dose. The programming is usually done every three months when the pump is refilled.

Besides Dr. Varkey, the team consisted of Rajesh Kumar, Sudheer Y. and Celin George.

By VICKIE BECK
As movement becomes more difficult, due to age or other issues, stretching becomes important just to maintain abilities. It may be difficult to imagine practicing yoga if you can't move particularly easily. But the peaceful, gentle stretching may actually be a good choice for people with disabilities.
The American Pain Foundation's Web site, www.painfoundation.org, has a six-week course called "Chair Yoga for Good Living" that helps those who must remain seated. While a yoga instructor is probably preferable, the course can be led by therapeutic recreation staff or nurses, peer advocates or volunteers. The course is described as a relaxation and breathing class, appropriate for those coping with chronic pain, stress, illness or disability. The six weekly themes are Being Positive, Being Mindful, Being in Community, Being Love, Being Compassion and Just Being Plain. Each hourlong class has 12 components, including sounds, hand gestures, breathing movement, relaxation and mediation.
Another resource is www.getfitwhereyousit.com, which offers a chair yoga fitness and exercise DVD for sale. The exercises are led by Lakshmi Voelker-Binder, a member of the Yoga Alliance and the International Association of Yoga Therapists.
In addition to those with conditions typically labeled as disabilities, Voelker-Binder recommends chair yoga for those coping with weight issues, osteoporosis, arthritis, diabetes, heart disease, chronic pain, breathing problems, multiple sclerosis and scoliosis.
Chair yoga is good for anyone who sits at a desk all day. Once a few particular movements are learned, including the lower back circle, facial and eye movements, wrist and ankle rotations and some deep-breathing methods, they can be done at the desk throughout the day and co-workers will be blissfully ignorant. Voelker-Binder suggests a yoga break might replace the more traditional coffee break and improve production as well as the office atmosphere.
That might be a little too hopeful for me, but even the National Center on Physical Activity and Disability in Chicago ( www.ncpad.org) agrees the postures, which they say can all be modified or adapted to a seated position and the breathing exercises, can be beneficial to people with disabilities. In addition to basic stretching, some of the movements can help stimulate internal organs and increase blood flow and circulation.
Some studies also indicate the breathing techniques alone can ease anxiety, several forms of stress and possibly depression.
That might be enough reason to give yoga a try. There are plenty of yoga studios in the area; why not give the nearest one a call and see if they have a chair yoga class? If they don't, why not suggest they start one? There certainly ought to be enough people who could benefit.



Find this article at: http://www2.tbo.com/content/2008/nov/01/chair-yoga-may-help-those-who-stay-seated

By Diana_T. De Avila
Diana T. De AvilaLevel: PlatinumI am a trained psychologist and received my MS. Ed from The College of Saint Rose in 1996. I spent 7 years in religious ... ...

At first blush, you may think that the title of this article is a far stretch! You may be wondering how a video game console could possibly do ANYTHING useful for a person dealing with a degenerative disease such as MS. If you give me a chance, I will share my own experience. I'll also let you know that I am NOT a video game junkie. In fact, I have never found most gaming systems intuitive enough for me. The Wii is different, I was able to start using it out of the box. It was built that way and created to be extremely user-friendly.
The objective of this article will be to look at the Nintendo Wii gaming system and it's utility for fostering and enhancing movement, flexibility, balance, and cognition (memory, multi-tasking, etc.)
Although this lens mentions MS (because that is my own personal experience and journey) there are probably many other health conditions that could benefit from the same things. I need to mention that I am NOT a physical or occupational therapist and I am NOT trained in rehab or physical medicine. This is simply my own personal experience and observation. If you have any questions or concerns, please discuss them with your doctor.
The Wii (pronounced as the pronoun "we") is the fifth home video game console released by Nintendo. A distinguishing feature of the console is its wireless controller, the Wii Remote, which can be used as a handheld pointing device and can detect motion and rotation in three dimensions.
Who knew that exercising could be so much fun? Once you buy a Wii Gaming system, it comes packaged with Sports which is enough to get you started and getting the hang of how the remote works and feels.
While I would never purport that the Wii gaming system could be traded for a Total Gym, Treadmill or Elliptical ... I could purport that with the right combination of games, a regimen could be developed that could offer movement and exercise to both the arms and the legs.
The Nintendo Wii comes pre-packaged with the game Sports. Sports is really 5 games in 1:
1. Golf
2. Boxing
3. Baseball
4. Tennis
5. Bowling
If you can get over the "anime" type of animation and characters -- you'll do fine. The images are bright and differentiated by both color and pattern (this will accommodate someone with optic nerve damage who might have some problems with colors). The characters are easily distinguishable by patterns such as stripes versus solids.
What I love so much about Wii Sports is that it offers something called a "Fitness Test". This fitness test can be performed at different times (no more than once a day). The test uses an algorithm to look at all levels of play from coordination, speed and accuracy. During the course of a "Fitness Test" you will be given tasks from the various sports (this could be boxing, bowling and golf). Once completed, an "age" is applied to you (20 years being the youngest). Over time, you can take the fitness test and watch your results. Have you grown younger or older? Really a nice part of the game.
The movements used by players playing Wii Sports (tennis for example) do not have to be perfect and could be performed from a sitting position with some practice. In my opinion, the value of exercise and movement is better accomplished when the Sports are played in as realistic a manner as possible. That said, I am not a doctor or physical therapist -- so this should be discussed with them to find the optimal type play for you.
There are also many different games that tap into various cognitive functions such as mental tracking and short-term memory. These facets are often affected in those with MS. Trauma Center: Second Opinion requires the use of recall to accomplish current tasks. Each level " surgical operation" builds on the last and the player must remember certain procedures in sequence. This game also requires the use of various fine-motor skills to accomplish surgical tasks.
Although barely touching the surface, there is a tremendous amount of value to having a game system like the Nintendo Wii to bring fun into a rehabilitative environment. There is no reason that exercising the brain and body does not have to be a fun and exciting experience.
Diana de Avila is a woman with Relapsing-Remitting MS who is retired but also enjoys Internet marketing.

If you enjoyed this article on the Wii, make sure to check out her http://www.wii-auctionsite.com/ where she offers eBay Video game auctions and more.

Article Source: http://EzineArticles.com/?expert=Diana_T._De_Avila

Good afternoon ladies and gentlemen, boys and girls. Thank you for inviting me to your school today, and to share with you a part of who I am. This afternoon, I will not only read to you a piece of my autobiographical book,” The Broken Hoof,” but we will move together in rhythm, while teaching, and, I will empower you with some videos of where I have come from and what gifts I’d like to give to all of you. I’d liked to help you learn that “Anything is Possible” if you put your mind towards it.

You are all sitting here before me now, because deep, down inside of your own heart, you believe in yourselves like no one else does or ever has. You believe in your own individuals gifts and talents. And you believe that you are very special, in a very unique way. Each and every one of you, just like me, I’m sure, has had to overcome challenges and extreme difficulties. We all have these difficulties and obstacles, however, not all of us have the courage and strength, to face up to them, accept them, learn from them, grow from them, and change our attitudes in a positive way, while becoming willing to do what ever it takes to reach the goal we desire so badly.

Today, we will find new techniques; new approaches, and new ways to bring about these changes within ourselves, our attitudes, our beliefs, and our lives. We will begin right where we are now. And we will do it with unconditional acceptance and kindness. We will learn to be gentle with ourselves and our feelings. And, we will learn to accomplish our challenges one at a time. Today we will have some fun exploring ourselves with some of these methods.

We as individuals, have the power to change, along with change the world around us, but only if we have that willingness. This willingness within, will take us on marvelous journeys, but only if we trust this power of belief, then and only then will our accomplishments be unlimited.

When I was your age, the young people who surrounded my world, were all disabled. Why, you might be asking yourself? Well, I’ll tell you. When I was five months old, I got very sick. It left me with the paralysis you see today on my left arm and leg. I could not go to a regular school, because I could not learn like other children my own age. I had a learning disability called dyslexia. This learning problem made it very, very, hard for me to read, write, and do math like the other children in my classes. Thus, I had to go to a school that had children with Cerebral Palsy, like me, polio, multiple sclerosis, down syndrome, and other disabilities.

These were the only young people that I knew. So I had to create different ways to learn. I had to motivate myself, and tell myself that I could pass a test. I had to learn to be open minded. I had to learn to believe in myself, and to believe that no matter what my outer appearances looked like, I could change it. I would keep telling myself that I could change my life and the world immediately around me.

The difference in having a disability now, verses when I was a child, was that the educational system did not have the laws that you have today. I was pushed into classes where I was not learning like the other children around me. And when my mother got the first special education teacher, by talking to the principal, I was put in a classroom, behind a screen, to figure things out for myself, while sitting all alone for hours at a time, to fend for myself.

Finding my dance teacher, Al Gilbert, changed my life completely. Through his caring, gentle, and poised composure, I learned by example what it took to give it to myself, and then, eventually to all of you. Everyone of you here today, are here because you want to be here, you want to change and make your life better, and, you want to find and develop your gifts and share them with the world. This is and can be possible. It is all encompassing.

I would like to share a little bit of the journey I took to try to change some of the attitudes about what people with my disability were able to do. I spent a lot of time trying to put together the pieces of the puzzle called learning. Just as dance had made my body and spirit strong, now I was on a quest to find the tools which would unlock the door for me. Inadvertently, I helped unlock the doors for all disabled people.

I understood intuitively, that I would some day have to ultimately care for myself completely. To do that, I needed a good job. To get that job, I needed a higher education. And, I needed to learn all the things I never learned in 12 years of my fundamental schooling. The people, who were supposed to be helping me, sadly didn’t see thing the same way I did. They felt I should settle for something less than I believed I was capable of. To make a long story short, I fought and won the first Civil Rights Case in California, this guaranteed my right to earn an Associate of Arts degree in English and dance. While I was at college, I found helpers who understood my desire to learn all the things I never learned before.

This now led me to succeed in many different areas. I became an adaptive fitness instructor, an advocate, a published author, and a public speaker. My book, which I am going to read from shortly, was published in 2006, but took over twenty years to complete. And, in its infancy, it won second place in the Kaleidoscope Literary Prose Fiction Art award of 1983. I know every one of you has something to offer and give to the rest of the world. It is all about unlocking it. My hope is that my story and my visit here with you today, is the key that unlocks a door of deep desires for you. My other hope is that you find the power within yourself to succeed and the ability to be positive in every way. I hope that by me speaking here today helps you to find the area, the talent, and the gift you so joyously feel within your heart to give and share with the world.

A Long time ago, I found a poem by a famous British amputee; William E. Henley. He lost both his legs at the age of 12. When I first read these words, in college, these words from Maya Angelou sung sweetly in my spirit. Angelou first sees this as a mark of paternalistic contempt. She is held by a white superintendent in school who has just told her class, to be content to be athletes and cotton pickers. She turns it into an anthem or song of praises for our people and hers. It goes like this… “It matters not how strait the gate, how charged with punishment the scroll. I am the master of my fate, the captain of my soul.

I leave you with these sweet empowering words- take them home with you today to conquer and triumph! Make a positive mark on this world and leave a path behind you that no one else has ever left before.

Thank you for allowing me to share this with you, today. I will now answer any questions that you may have or that cross your mind.

ATLANTA -- Two years after her multiple sclerosis make walking exhausting for her, Tiffany Vinson has found something that has given her back her mobility.
Vinson didn't know what to think two years ago when she began to need help walking the stairs. She learned she had multiple sclerosis, a disease of the nervous system that, in Tiffany's case, made walking a struggle.
Today, Tiffany Vinson is moving forward, and anxious to show the way to others. This is the story of a lady, and her family, and a new device, and a tattoo.
Even after Tiffany Vinson was told she had multiple sclerosis she was all about moving forward.
"What's the next step?" Tiffany wondered. "I didn't have a moment where I was depressed or anything of that nature. It's just like, 'Okay, how do I live? How do I get it moving, so that I can provide for my two boys and my husband?' "
She investigated a device made by Hanger Prosthetics and Orthotics called the Walk Aide.
"For a person with MS, say," said Roger Feldman of Hanger Prosthetics. "The brain is not sending the correct signal to the muscle and nerve to function correctly. And this device takes the place of the brain."
The device helps people who've had strokes, spinal cord injury, traumatic brain injury, cerebral palsy and multiple sclerosis. It's being used by Iraq and Afghanistan war veterans -- but it is not covered by insurance.
Tiffany's MS had partially paralyzed her left foot. With this device, she could walk normally.
To make sure the Walk Aide works best for the individual patient, first that patient takes a test walk and his or her gait is recorded on the device. It's then uploaded to a computer where clinicians tweak it and send it back to that device so that it'll work the most efficiently for that individual patient.
Tiffany is moving forward.
"It's been amazing" she said. "It's been God's greatest gift to me. I have been able to walk and even make a turn sometimes."
Now about the tattoo. Tiffany put it there to cover a bad burn she got as a child. The butterfly has two dots -- exactly where the Walk Aide is supposed to be attached.

Do I have muscle spasms as a result of your Cerebral Palsy

As you may of read already through my blog I have spastic diplegia cerebral palsy which means I have tight muscles which means I find it difficult to move at times because my legs are stiff and it can also be tiring because I am sort of fighting against it. The worst time for me is winter or if it’s cold and damp my muscles tighten up. To help me overcome the tightness I take a daily muscle relaxant called Dantrolene and this helps to keep my muscles loose enough to move but not enough to make me go floppy, because with Spastic Diplegia CP the move has to have a certain amount our tightness to be able to function.Dantrolene sodium is a muscle relaxant that is currently the only specific and effective treatment for malignant hyperthermia. It is also used in the management of neuroleptic malignant syndrome, muscle spasticity (e.g. after strokes, in paraplegia, cerebral palsy, or patients with multiple sclerosis) and ecstasy intoxication.