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Living life to the full around the world

Read about how people around the world live with Disability. Here you will read about our highs and lows in life,

27 February 2009

Stunning Finding: Compounds Protect Against Cerebral Palsy

by Insciences

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

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

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

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

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

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

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

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

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Cameron: 'If we can't look after him, we have failed'

The Times
February 26, 2009

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

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

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

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

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

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

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

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

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

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

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

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

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

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Project is helping disabled young people into work

(From Worcester News)

3:10am Wednesday 25th February 2009
A SPECIALIST recruitment branch in Worcester has been invited to provide candidates for a prestigious European mentoring project to help young people with disabilities get into work.
Remploy has been asked to help with the Validating Mentoring 2 (VM2) project, which is run by six international partners, including the University of Worcester.

Project officer Charlie Wise said: “The project’s focus is to enhance the employability skills of young people with disabilities through mentoring, so they are better placed to secure employment. It helps candidates develop realistic and relevant insights into the world of work and enhances their abilities to meet everyday life and work challenges.”

Remploy, the UK’s leading provider of employment services for people with disabilities and health conditions, delivers the Government’s Pathways to Work programme in Worcestershire.
Its branch at the Butts in Worcester provides a range of specialist services and advice to support people off incapacity benefit and into employment.

Pathways to Work district manager Sharon Withe said: “We see this as a valuable extension of the branch’s services. Compared with their peers, disabled people can often lack formal qualifications which has obvious effects on their employability.

“Through our collaboration with the university and this programme our mentees can benefit from the advice and real-life experiences of local business leaders.”
Volunteer mentors are recruited and trained by the university and seven mentoring relationships have already been established with Remploy clients.
Dr Val Chapman, project director at the University of Worcester, said: “VM2 is funded by the Leonardo da Vinci programme of the European Commission.
“The project ends in September this year.

“If proven successful, it could potentially be used as a blueprint for a new mentoring scheme to be run in conjunction with Remploy and Herefordshire and Worcestershire Chamber of Commerce.”

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Hospices where Ivan's legacy lives on

- Health News, Health & Wellbeing - The Independent

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

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

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

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

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

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

Campaigning from some well-known patrons has helped. These include Sir Cliff Richard, Sir Trevor McDonald, Joan Collins, Richard E Grant, Vince Cable and Laurence Llewelyn-Bowen, the last of whom donated ÂŁ500,000 he earned from a Valentine's Day edition of Who Wants To Be A Millionaire? But few people realise the fragility of these centres' finances, the Spandau Ballet singer Tony Hadley told The Independent yesterday. Hadley has played in several fundraising concerts free of charge for the hospice.

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

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25 February 2009

Cameron's Son Dies

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

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

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

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

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

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

On learning of his son’s illness, Mr Cameron has said in the past: ‘‘It hits you like a freight train because all the expectations you have for your child change immediately.’’

They have two other children, Nancy, five, and Arthur, three.

Prime Minister Gordon Brown led condolences today - saying the loss of a child was something “no parent should have to bear”.

Mr Brown, whose own baby daughter died in 2002, said: “Sarah and I were very saddened to hear of the death of Ivan and we have sent our condolences to David and Samantha. I know Ivan was a child who brought joy to all those who knew him and his was a life surrounded by love. The thoughts and prayers of the whole country are with David, Samantha and their family.”

Today’s Prime Minister’s Questions in the Commons has been suspended, Downing Street said.

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24 February 2009

Special Education Yoga finds new fans in school

By showing how yoga can help disabled students, one enthusiastic teacher has made the discipline standard practice. > By John H. Tucker

Inside the gymnasium of P.S.811x, in the East Morrisania section of the Bronx, Martha Gold weaved her way around 50 yoga mats, adjusting the poses of her students. "Hug your knee, give it a big kiss, and say 'I'm perfect just the way I am,'" she chirped, eliciting a chorus of giggles.

For most New Yorkers, yoga, with its deep stretches and wicked bends, can be difficult. But at P.S.811x, which enrolls children with cerebral palsy and other disabilities, it's uniquely challenging. With limited range of motion, many of the students here can't eat or dress on their own. Several are confined to wheelchairs.

On this day, however, the room was astir with moving limbs as the students took to their mats. After a decade or two of working its way into New York's mainstream, yoga is now flowing into the city's District 75, an umbrella classification for the classes and schools that serves students with brain damage, autism and other developmental, behavioral or psychological disabilities. Physical therapists at these schools are beginning to discover the benefits of the practice, and some estimate that nearly half the schools offer a yoga class. Not long ago, that percentage was close to zero.

The advantages of yoga for healthy people are well-documented: increased strength, flexibility and relaxation. But for the child with developmental disabilities, the benefits are perhaps greater. Heightened sensory awareness, vocalization skills and breathing capacity are just a few.

"A lot of these children have a reduced respiratory system,” said Joe Cattelona, a physical therapist at P.S.138m, a District 75 program in East Harlem. “Yoga gives them better oxygenation to the blood, which circulates to their brain and allows them to breathe in ways they don't normally do."
By prompting the brain to release serotonin and dopamine, yoga also helps lower the heightened anxiety that's characteristic of children with cerebral palsy, said Susan Flynn, an occupational therapist at P.S.10x in the Bronx.

Last month, Mayor Bloomberg frightened education advocates by announcing that budget cuts could lead to the elimination of 14,000 education jobs. Some feared that the city’s physical education programs — which include District 75 yoga classes — might also be impacted. But because of the newly approved stimulus package, which is expected to endow the city with more than $1 billion for education — including a large portion for special-needs education — many of those fears have been put to rest.

Even if education cuts were made, yoga programs and other physical education classes wouldn’t have taken much of a hit, said Director of Fitness and Health Education Lori Rose Benson. A reason for this, she said, is that her office is largely funded by the city’s Department of Health and Mental Hygiene, in a collaborative effort to fight childhood obesity.

Under the seven-year chancellorship of Joel Klein, “a significant” amount of money has been injected into the department’s physical education budget for the first time in decades, said Benson. The money has gone toward equipment, training programs and — in the case of District 75 — a newly appointed physical education director and new outreach efforts with Special Olympics officials.
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The surge of yoga within District 75 — which comprises 56 schools — is primarily thanks to Gold, a physical therapist who arrived at P.S.811x, also known as the Academy for Career and Living Skills, several years ago. One day she introduced a number of poses to four able-bodied students in class. A few weeks later, six others joined. Eventually, the sessions outgrew the classroom.

In 2004, Gold and three colleagues began offering weekly workshops for other special-education professionals in the city. The workshops eventually reached 200 therapists and teachers, many of whom immediately began implementing programs with their own students.

"After that, it spread like wildfire," recalled Katherine Deats, who co-taught that workshop and is now a yoga instructor for two District 75 schools in Manhattan. "These kids have such a hard time succeeding in anything," Deats said. "But they can go to yoga and succeed. If you can breathe and chant, you succeed."

Gold, a Queens native in her later 30s, is a slight woman, shy, with jet-black hair, siren-red lipstick and a penchant for bright velvet jumpsuits. Popular among fellow teachers, she's known for the enormous audio speaker she rolls to and from yoga class each day like a worn-out suitcase. She greets colleagues in the hallway by clasping her hands in prayer, bowing down and politely saying "Namaste," a Sanskrit greeting of deep respect. The teachers return the gesture.

Luis Quintana, the school’s assistant principal, said he’s grateful for Gold's vision. "I see a decrease in aggressive-violent behaviors among the children immediately after her class," Quintana said.

"Martha is one hard-working woman who puts her heart and soul into helping children," said Debra Krasinski, a Columbia University professor and physical therapist, who each year invites Gold to give a yoga workshop to her doctoral students.

Gold also runs her workshops for other physical and occupational therapists, special education teachers and nurses across the city. She offers training sessions to members of the District 75 PTA, as well as educating skeptics who worry yoga is too religious for their children. "It's not religious, it's spiritual," says Gold, who one day wants to open a studio where able-bodied and disabled children can come together to practice yoga in order to learn the value of acceptance.

"If you take the physical body and all of its limitations out of the equation and get down to the level of the soul, we are all equal and ideal," she said.

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Painted Hands

It takes this guy four hours to do a hand. Then he photographs it for
posterity. I cannot imagine how he does the eyes so remarkably lifelike. It took him 10 hours to do the two-handed Eagle in picture #2.



video

APL Riff on Video Game Helps Prosthetic Patients



Iraq veteran Jonathan Kuniholm trains with the modified Guitar Hero system.
By Paulette Campbell Applied Physics Laboratory



Wii-habilitation" — using Nintendo's Wii video game system in rehabilitation therapy — continues to be popular with health care workers looking to help patients get through what some see as the pain and torture of physical therapy. Now two engineers in APL's National Security Technology Department have cranked that concept up a notch. Bobby Armiger and Jacob Vogelstein have rewired Nintendo's Guitar Hero III: Legends of Rock game to allow amputees to rock out and get valuable training with prosthetic prototypes at the same time.
Their gaming is part of the APL-led Revolutionizing Prosthetics 2009 effort, funded by the Defense Advanced Research Projects Agency, to develop a prosthetic arm that will be controlled and also feel, look and perform like a natural limb. So far the project has produced two prototypes and has leveraged a surgical technique, developed at the Rehabilitation Institute of Chicago by Todd Kuiken, that reroutes the nerves that once controlled an amputee's arm to remaining muscles. These "re- innervated" muscles naturally amplify the nerve signals so that electrodes placed against the skin can detect activity and control the prosthetic arm.
The surgery has enabled patients to control the first prototype arm and will eventually be used to control individual fingers of the final prosthetic design. But for the arm to operate correctly using these rerouted nerves, the system must learn to interpret the patient's muscle signals. The process is similar to training voice-recognition software where, for example, you are prompted to read the Gettysburg Address, except that instead of analyzing tones, the APL system records and classifies muscle twitches.
This training takes place in a Virtual Integration Environment, another RP 2009 innovation. "In the VIE, an animated on-screen arm mimics the patient's intended movements in real time, based on inputs from the electrodes attached to the user's residual muscles," Vogelstein explains. "For the training, a patient sits in front of a computer and an on-screen prompt tells them to 'flex your wrist,' 'extend your wrist,' 'close your fist,' etc."
Calibrating the mechanical limbs to recognize and respond properly to electrical signals in an amputee's residual muscles is an exhausting and draining process, says Armiger, who has been on the front lines of training the system to respond naturally to the patient. "There is no real interaction and no feedback," he says. "And there is no encouragement for the patient to do more or do it better."
The idea to adapt the game for amputees came to Armiger while he was playing Guitar Hero at a party. He and Vogelstein borrowed a colleague's copy of the game and modified the controller with a soldering iron to allow it to be controlled by the VIE. Then, button clicks were substituted with muscle contraction signals as picked up by the electrodes.
Last fall, Armiger and Vogelstein traveled to RP 2009 partner Duke University to test the rigged system on Iraq veteran Jonathan Kuniholm, who lost his right hand to shrapnel in 2005. With electrodes attached to what was left of his arm, Kuniholm was able to operate the frets using signals from his muscles.
The researchers found that playing a game is a far more intuitive way to speed up the tedious calibration process and make it more fun for volunteers. "It allows for large numbers of rapid, dynamic movements that are more natural and not stereotyped," Vogelstein says. "Ultimately we are going to get more input and longer training cycles out of patients — and that will translate to better and more natural limb control."
Armiger and Vogelstein next want to adapt a tennis game to train people with more radical amputations. "Eventually we want to make our software open source so that people can repurpose other games for rehabilitation," Armiger says.

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23 February 2009

Seven Wheelchairs: A Life beyond Polio

Who better to report on the world of disability than someone who has been a citizen for close to fifty years?

My book (Seven Wheelchairs: A Life beyond Polio) was published this year. Writing it reminded me of a life lesson any one alive should learn early: Life is a grand thing, and it's all we know this side of Infinity, and all of us should be prepared to squeeze it dry. How? Seven Wheelchairs offers the opinion that we should greet each day with curiosity, with optimism, with passion, and then head out to release a little good karma in the world.

If you've been riding a wheelchair as long as I have, you realize attitudes toward disability have changed over the years, but we still get the occasional "Oh, I could never live like that" comment. The implication is that we should skulk off to a corner and cry.

I was reminded of another aspect of this victim attitude a few days ago when I was interviewed by the host of a syndicated radio show. It seemed to me that he constantly wanted to bring the conversation back to the issue of anger. When I returned home, I looked up the passage in the book that had sparked his interest. It relates to my perception of the transaction between me and attendants I've had over the years.
"And so I have always been openly grateful to everyone who assists me in accomplishing that which my body cannot do for me. "You're so polite," more than one attendant has said. At first, I was polite, biting down and swallowing anger, because it was in the power of the caregiver to neglect me. And neglecting me would kill me.

"Now I believe I am polite and grateful because I better understand the nature of the transaction. Such weak terms – politeness and gratitude – for what I strive to express, which is a potent cocktail of reciprocal love, embarrassment, guilt, gratitude, resentment, appreciation, anger, and bemusement, all blended to please the palate and poured out as a pretty peace-offering, something to swallow so that we each understand you feel both good and bad about helping me, and I feel bad and good about needing help."

I suppose we all rage, including also those who presently journey through the world not yet disabled, saints excepted. But I didn't begin the book to vent. I wanted to illustrate the reality of disability, but to do that, I wanted to write so that people with disabilities would be seen as ... well, real, for lack of a better word. We human creatures are a gloriously messy mixture of good and bad, strong and weak, happy and sad. The reverse of that coin is that no one with a disability should be assigned to play the role of "inspiration" or a "hero."

And from the feedback I'm receiving, I'm pleased that many readers have seen me as a whole person, one in whom disability is present but not dominant, And one who realizes anger, like disability, can define character but is wise enough to understand that there are other psychological, intellectual, and emotional elements that also shape character.




By Gary Presley

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Amazing Art

video

22 February 2009

Watermelon as you can never seen before

video

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Eureka we found the source of the pain

Well we finally found the source of my leg pain at last, I went through to see Mr Papastefanou on Friday about my back and leg pain and unfortunately I have to have further spine surgery. I virtually spent the whole day at the hospital and by the time I got home I was shattered. Anyway I had to go for a set of new x-rays so that he could see what was going happening, it surprised me somewhat in that considering the constant changes in technology that here we are 6 years on and they were still using the old (or at least what I call old) x-ray method. I had one full length one and a side view; I have to say I was interested to see what my back looked like after 6 years.

When I got back to see him we compared the x-rays with those I had in 2005 and there was some significant deterioration with the one remaining disc that wasn’t part of the original surgery, so much so that I have to have the disc removed and have it replaced by an artificial disc, I was a bit shocked at first but then on the other hand I was relieved that we had found the reason for my pain. I now have to wait for a date to have an MRI under aesthetic as I don’t like MRI’s the noise they make makes me very jumpy so it can be hard to get the scan done, so this time at least I will be asleep and then after that we can discuss the full extent of the damage and plan for the surgery.

What is an Artificial disc replacement

Artificial disc replacement (ADR) is a device or implant used to replace a diseased or damaged intervertebral disc. After removing what’s left of the worn out disc, the ADR is inserted in the space between two lumbar vertebrae. The goal is to replace the diseased or damaged disc while keeping your normal spinal motion. Artificial disc surgery is relatively new in the United States but has been used in Europe for many years.

I will be posting about my new journey as it happens.

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21 February 2009

Movement strengthens the brain

Professional development days let teachers keep learning, from educators and the community. Later this month, they’ll have an opportunity to take a workshop with yoga instructor Melissa Verton Rinvold of Blue Eagle Yoga in Vernon.

Verton Rinvold will demonstrate movement techniques, not yoga, that are designed to make the brain stronger, smarter and more balanced, which makes the body healthier and more functional. The movement can be done in the classroom without any special equipment and some teachers are already using it as part of the 30 minutes per day of physical activity now required for all students.

“Athletes have long known about the benefits of yoga for recovering from injury and building strength and endurance. I have adapted the principals and written an illustrated manual that is so clear that the exercises could be used in groups, as part of individual station training or as preparation for taking part in sports,” said Verton Rinvold, who calls the program Smart Movement.

“There are also benefits to the brain. The movements connect with breathing and the cross co-ordination circuits the brain to work harder and become more creative. This is much more than exercise, it is training the brain. When I have done presentations to children and young people, I have found that they are interested in learning how their bodies work and what they can do.”

Verton Rinvold, originally from Chicago, began practising yoga when she was 17 to recover from a car accident and found that it also improved her concentration in her pre-med studies at university. She decided instead to pursue her interest in dance and art and studied yoga when she moved to San Francisco. While she studied many forms of yoga, she specialized in Raja yoga, the oldest form, which concentrates on the importance of breathing leading to flexibility and endurance. She also studied kinesiology, anatomy and homeopathy at university levels.

She has also worked with children with asthma, autism, cerebral palsy and brain damage.

She has worked with adults with a variety of needs, including physical and mental challenges, psychological issues, recovering from illness or injury and conditions like fibromyalgia and chronic obstructive pulmonary disease.

“I am so passionate about my work because it works. With the proper training, the body can support what is decided in the mind. I impart these powerful principles, tools and techniques that have for thousands of years claimed specific cures and approaches for health and well being,” said Verton Rinvold, who moved to Vernon 10 years ago, where she teaches groups and individuals as well as leading workshops and co-ordinating yoga/dance projects for community organizations. She also designs programs for sports teams and is working on a series of manuals with yoga for specific conditions.

“Breathing is the essence of life that enhances all aspects of life. It’s empowering. It’s something I do regularly to make me happier and healthier. When people take these tools and use them, they really work but they have to do the work and apply the principles. I’ve never not seen it work.”

For more information call 250-503-0255 or e-mail blueeagleyoga@yahoo.ca.

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Healthy Athletes

For more than 10 years, Special Olympics has been serving athletes by offering free health screenings and health information at local, regional and World Games. In the process, Special Olympics has become the largest global public health organization dedicated to serving people with intellectual disabilities.

An athlete gets his hearing tested at a Healthy Athletes event. Healthy Hearing is one of seven health screenings Special Olympics provides to its athletes.
By listening to athletes at events and conducting research over many years, Special Olympics leaders became aware of the lack of quality health care for people with intellectual disabilities and found it unacceptable. We found that people with intellectual disabilities have a 40 percent greater risk for health issues, and that health care professionals are not trained in or experienced with caring for people with intellectual disabilities.

Called into action, we began to explore ways to help using Special Olympics’ unique global reach and access to people with intellectual disabilities. The result was the launch of the Healthy Athletes¼ initiative in 1997. Today, Healthy Athletes provides health screenings free of charge at Special Olympics competitions. Offered in a welcoming, fun environment, these screenings educate athletes on healthy lifestyle choices and identify problems that may need additional follow-up.

Healthy Athletes currently offers health screenings in seven areas: Fit Feet (podiatry), FUNFitness (physical therapy), Health Promotion (better health and well-being), Healthy Hearing (audiology), MedFest (sports physical exam), Opening Eyes (vision) and Special Smiles (dentistry).

Through a global team of health-care volunteers, Healthy Athletes works to improve access and health care for Special Olympics athletes; make referrals to local health practitioners when appropriate; train health care professionals and students about the needs and care of people with intellectual disabilities; collect, analyze and dessiminate data on the health status and needs of people with intellectual disabilities; and advocate for improved health policies and programs for people with intellectual disabilities.

Healthy Athletes has a presence in more than 100 countries. Its influence is evident with more than 76,000 healthcare professionals trained, free health screenings provided to more than 700,000 athletes, and 50,000 free pairs of eyeglasses given to athletes. And it is just beginning – Healthy Athletes continues to grow each year with help from a global network of volunteers, in-kind donations and other financial support.

For more information on Healthy Athletes, contact Karl Hejlik, Senior Manager, Health and Research Communciations, at +1 (202) 824-0308 or khejlik@specialolympics.org.

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17 February 2009

There's Always Someone Worse Off Then You

I was reading in my local paper today, so many tragic things happening all over .I know I've been asking for advice and very few comments from those others for whatever reasons ?The ones who have responded are becoming my friends and I am listening to there suggestions.
I realizeI am fortunate to be as non -restricted as I am.I was reading about a little girl in my home town who is missing 2 days ,I can't imagine how her family is coping .So many times we only see our own situation I know I've struggled with Cerebral Palsy all my life ,knowing my future would not be average or high degreesand or jobs and for many years I was bitter >Today I realize so many other people have less or are going through loss,grief or tragedy far greater then I will or have gone through.
For the families and loved ones in harms way or those who are afflicted with hardships I pray and a higher power to bring all those suffering answers and peace to their particular situations. I was at a regional center meeting and I was really cold 48dgr's outside and the air coditioner was on !I was having shivering and my hands were trembling ,this was an orientation meeting to be accepted into a developmental disabilities program.I saw parents of children and I felt like crying .I know the battles my parent went through with me and also the social perception of a differently- abled child.I am so lucky to just be inconvenienced by my Cerebral Palsy ,I function moderately well and educationally well that's another story.My point to all this is I recently had to realize my goals and dreams are going ahead one day at a time.I now wake up more positive in just today.Sure I can't afford to go out or get my teeth fixed but maybe next month at least I have teeth and maybe soon someone will guide me to where I can do my music and afford to be on my own .Some have been taken away too soon and some just need much more then I to just have a meal once a day I am doing all I can for today

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15 February 2009

New to blogging

I'm Shelley :I have to say, I'm very new to this blogging thing and right now, I'm feeling a little lost and confused....lol... (Please bear with me.) I join this site because my son Josh. Josh is 9 yrs Old and has a many issues going on. Born with a mild form of CP and Epilepsy. We later learned that Josh also has a mild form of Autism.

Each day we learn something new and take each day one step at a time. We have concord some challenges and yet we still have a long way to go. I'm interested in learning all I can about Autism.

Thanks for taking the time to read this and I look forward to meeting every one here.

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Stem cell transplant reverses early-stage multiple sclerosis

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)

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Eagle Rehab clinic helps make therapeutic treatment child's play

By GREGG L. PARKER
For the Madison Spirit writeone35758@yahoo.com
Business focuses on pediatrics as well as programs for adults

Eagle Rehab Physical Therapy and Wellness not only helps adults return to a normal lifestyle but reaches children in a way they enjoy: therapeutic play.

Scott and Stephanie Pruitt are registered physical therapists. Scott works with adult patients. Stephanie is responsible for pediatric therapy and is chief financial officer. "It's really two separate parts of one clinic," she said.

The clinic covers 6,000 square feet. One-third of the clinic is dedicated to pediatrics and includes a pediatric gym, baby room and handwriting room, she said. "We utilize a long, wide hallway for riding bikes, running, scooter boards and other fun therapeutic activities that require lots of space."

The therapeutic equipment includes bikes, tricycles, a trapeze bar, ladder, balance beam and manipulative toys to engage children during treatment.

Children's therapy relies on a child's main interest: playing. In therapeutic play, Stephanie Pruitt may have children walk up steps, slide on their stomach and wheelbarrow-walk to repeat the exercise. On a swing set with platform, sling and tire swings, "children can fly like a bird by laying on their stomach. One favorite is bumper balls, using big physioballs to gently bump to work on dynamic balance, eye-hand coordination and deep pressure."

Eagle Rehab is fully equipped to do casting for orthotics, often required for children's treatment. "We're trained to fit and monitor orthotic use," she said.

The clinic tries to know the most current medical techniques in order to offer its patients the best treatment, Pruitt said. "Children with cerebral palsy show excellent progress with the postural restoration program. These exercises and techniques have prevented one patient from having hip surgery," she said.

Eagle Rehab treats children with torticollis or head tilted to one side, plagiocephaly or skull flattening, spina bifida, developmental delay, fine motor delay and orthopedic injuries.

"Sensory integration is a hot topic in therapy. Children with sensory processing disorders make up the bulk of my caseload," she said.

In addition to pediatric physical therapy, the clinic offers a wellness program, massage therapy and orthopedic and sports physical therapy for adults.

Eagle Rehab sees patients by physician referral, an Alabama requirement. Parents choose a child's individual therapist.

The clinic has eight employees: three therapists, two assistants, one massage therapist, one marketing representative and one office manager.

The Pruitts graduated from the University of South Alabama College of Allied Health Professions with degrees in physical therapy in 1998. They have three sons: 8, 6 and 4 years old. Stephanie said her sons are "my biggest source of education with my pediatric career."

Hours are from 7 a.m. to 6 p.m. on Monday through Friday. Pediatric patient appointments are Monday, Wednesday and Friday from 9:15 a.m. to 3 p.m. and Tuesday from 1 to 5 p.m. Call for other appointment times.

Eagle Rehab is located in the Madison Professional Centre, 44 Hughes Road, Suite 1050. For more information, call 325-5400, send a fax to 325-5469, send e-mail to eaglepeds@knology.net or visit www.eaglerehabpt.com.d

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14 February 2009

Help us to raise funds to continue providing a valuable website



Help us to raise funds to continue providing a valuable informational website for all disabled people and there families

Thank you to everyone in advance

Lets continue to help and raise the profile of disability

08 February 2009

New robotic walking system gives hope to people with paralysis

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.

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Boy has pioneering brain implant

BBC NEWS | Health

Thomas is recovering well say his mum and dad and Dr Jean-Pierre Lin
A five-year-old boy has become the smallest patient to undergo deep brain stimulation at a London hospital.

Thomas Melville-Ross has had electrodes inserted in his brain as a treatment for dystonia - a condition which causes involuntary muscles contractions.

At just 12.6kg (2 stones) - around the same as a toddler - his size meant the operation was only possible due to the development of a new small implant.

His twin sister, Alice, is also due to have the operation later this year.

Dystonia is a painful condition which causes affected parts of the body to develop abnormal movement or postures.

In severe cases it can be massively disabling.

This new device means we can try and help manage their conditions from a far earlier age

Dr Jean-Pierre Lin, Guy's and St Thomas's Hospital

Thomas and his sister, who live in Buckinghamshire, have the condition as a result of being born 16 weeks prematurely.

Deep brain stimulation is the only treatment in severe cases and is done through a surgically implanted medical device similar to a pacemaker.

The implant delivers controlled electrical pulses to affected areas of the brain to block out the signals which cause the disabling movements.

Previously implants have been too large to use in very young children.

But doctors believe that the years before the age of eleven are the most important in terms of neurological development.

A team at Guy's and St Thomas's and Kings College Hospitals said the new implant also has battery that can be recharged from outside the body, meaning it can last for almost a decade rather than only a couple of years.

Surgeons were keen to do the operation on Thomas as soon as possible as his dystonia makes it impossible for doctors to fit him with a cochlear implant he needs to cure his profound deafness.

Improvement

Dr Jean-Pierre Lin, consultant paediatric neurologist at Guy's and St Thomas' said although the implant takes three months to work there were already signs of improvement.

"Premature babies like Thomas are often affected by dystonia but because they develop smaller physically it has been impossible to give them early treatment.

"As a result they have gone on to suffer a poor quality of life and also a number of knock on problems such as spinal and hip injuries.

"This new device means we can try and help manage their conditions from a far earlier age."

Mr Richard Selway, the surgeon who did the operation on the 30 December, said dystonia could be "disastrously disabling"

"In addition to being smaller, the fact the new device is rechargeable is a massive benefit to the patient.

"This offers exciting possibilities and we anticipate being able to treat a lot more young children in the coming years."

James Melville-Ross, Thomas's father, said it was a big decision to put him forward for major surgery at such a young age but it was necessary.

"It is still early days, just over a week since the operation, but we are hopeful this will improve his long-term quality of life."

Philip Eckstein, chief executive of the Dystonia Society, said it was an "exciting development".

"The painful and uncontrollable muscle spasms of dystonia can be devastating to the child and the child's family.

"The fact that the operation can now be performed at a much earlier age means that there is less chance of pain and permanent muscloskeletal deformity and a much better chance that the child can have a good quality of life like their brothers or sisters."

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Chronic pain seen altering how brain works

By Julie Steenhuysen

CHICAGO (Reuters) - Brain scans of people in chronic pain show a state of constant activity in areas that should be at rest, U.S. researchers said on Tuesday, a finding that could help explain why pain patients have higher rates of depression, anxiety and other disorders.

They said chronic pain seems to alter the way people process information that is unrelated to pain.

"It seems that enduring pain for a long time affects brain function in response to even minimally demanding attention tasks completely unrelated to pain," the researchers wrote in the Journal of Neuroscience.

Dante Chialvo, a researcher at Northwestern University in Chicago who worked on the study, said: "People with chronic pain -- meaning pain that lasts more than six months after their injury -- have many other issues that affect their quality of life as much as pain. It is not known where they come from."

Recent studies have shown that in healthy people, certain regions of the brain take over during a resting state, something known as a default mode network. "It takes care of your brain when your brain is at rest," Chialvo said in a telephone interview.

When a person performs a task, this network quiets down, he said, but not in people with chronic pain.

Instead, a front region of the cortex mostly associated with emotion is constantly active, disrupting the normal equilibrium.

To study this activity, Chialvo did a type of brain scan known as functional magnetic resonance imaging on 15 people with chronic back pain and 15 healthy people.

They gave their volunteers a simple attention task -- tracking a moving bar on a computer screen -- to observe the brain shifting out of default mode to handle the task.

Both groups performed the task well but when they measured areas of the brain activated, differences emerged.

"Where we were surprised is the difference in how much brain they used to do the task compared with the healthy group. It was 50 times larger," Chialvo said.

They said disruptions in this default network could explain why pain patients have problems with attention, sleep disturbances and even depression.

"These findings suggest that the brain of a chronic pain patient is not simply a healthy brain processing pain information but rather it is altered by the persistent pain in a manner reminiscent of other neurological conditions associated with cognitive impairments," they they wrote.

(Editing by Maggie Fox and Bill Trott)

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MRI scans can predict effects of multiple sclerosis 'flare-ups' on optic nerve

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/

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New technologic device helps control seizures

Epilepsy patients in a clinical trial who received an experimental brain treatment from Fridley-based Medtronic saw a significant reduction in seizures — a result released Saturday night that will spur the company to seek Food and Drug Administration approval so it can sell the device.
The trial was the most rigorous study thus far of Medtronic's deep brain stimulation device for epilepsy. The results were presented at the annual meeting of the American Epilepsy Society in Seattle.

They mark a significant milestone in Medtronic's drive to further develop the market for brain stimulators, which already are approved for use in patients with tremor disorders such as Parkinson's disease.

Much like pacemakers use electrical energy to regulate heart rhythms, implantable stimulators like the epilepsy device target specific portions of the brain.

"While the exact mechanism of why this works is not known, it has something to do with disrupting the highly synchronized abnormal electrical activity in the brain during a seizure," said Robert Fisher, professor of neurology and director of the Stanford Epilepsy Center, who was principal investigator of the trial.

The device consists of a pulse generator that is implanted in the chest and connected to small electrical wires that are tunneled beneath the skin and up the neck to the top of the head. The wires pass through the skull and reach deep into the brain, where they deliver electrical stimulation.

Brain stimulators are part of a group of so-called neuromodulation devices that Medtronic and rivals Boston Scientific and Little Canada-based St. Jude Medical see as key to future growth.
Houston-based Cyberonics already has approval from the FDA to sell a neuromodulation device for epilepsy patients, although that product sends electrical pulses to the vagus nerve in the neck — not the brain.

Epilepsy is a neurological condition that produces seizures affecting a variety of mental and physical functions. Seizures occur when a brief, strong surge of electrical activity affects part or all of the brain.

Patients enrolled in the study have had epilepsy for an average of 22 years, and their cases have been so severe that epilepsy medications haven't helped much.

The study found that 53 patients using the device in conjunction with epilepsy medications saw a median reduction in seizure frequency of 38 percent at three months — significantly better than the result for a control group of 55 patients who received the device but weren't receiving stimulation.
After three months, patients in the control group also had their devices turned on, and more patients saw a higher level of improvement, Fisher said. One of the key findings, he said, is that 60 percent of study participants for whom researchers had long-term data reported a 50 percent or greater reduction in their baseline rate of seizures at the end of the study period — anywhere from one to four years.

"If it hadn't been sustained, I wouldn't be so interested," Fisher said, adding that patients likely wouldn't let doctors put "wires in their heads" for a treatment that stopped working within six months. "But it turned out to be lasting."

Although Fisher said the results were "promising," he stressed that the device doesn't provide a cure for epilepsy. While a few patients in the study were seizure-free for long periods, a few saw no benefit, he said.

Others saw some level of reduction in seizures and, in some cases, a reduction in the intensity of seizures.

About 11 percent of study participants suffered an infection — not in the brain, but in the chest, neck or scalp where the pulse generator and wires were implanted.

Even if all goes well with Medtronic's forthcoming application for FDA approval, Fisher added, the treatment likely wouldn't be available until mid- to late 2010.

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Brain Surgery for Epilepsy Extends Life Expectancy, Study Says

Dec. 2 (Bloomberg) -- A surgery to remove a paper clip-sized sliver of brain may help some epilepsy patients live as much as five years longer than those on anti-seizure drugs, according to a computer-generated analysis of patient data and studies.

The surgery can also boost quality of life, allowing patients with temporal lobe epilepsy, the most common form of the disorder, to live more years with fewer seizures, the analysis found. The report will be published in tomorrow’s Journal of the American Medical Association.

Doctors have known the surgery to be effective since the 1950s in patients whose seizures stem from the temporal lobe, the part of the brain that processes emotions. Still, many patients that might benefit don’t get the surgery because doctors overestimate the likelihood of complications, the study’s authors said. The surgery is most effective when performed early enough to prevent permanent disabilities, said neurologist Jerome Engel, the author of an accompanying editorial.

“The objective for treatment should be no seizures and no side effects, and as soon as possible,” said Engel, a professor of neurology at the University of California, Los Angeles, in a telephone interview today. He was not involved in the study. “The longer the seizures go on, the less likely patients are to be rehabilitated.”

The report was created by using quality-of-life data obtained directly from patients and published data from medical studies to create a model. The researchers ran the model 10,000 times to get their results. The model patient used in the report was 35 years old.

Signals Disrupted

Epilepsy is an illness in which signals of the brain’s nerve cells’ are disrupted, causing seizures. The condition is incurable, and the risk of seizures means some people can’t get drivers’ licenses in certain states, according to the National Institutes of Health. About 3 million Americans are affected, causing $12.5 billion in annual costs, according to the Epilepsy Foundation.

About 20 percent to 40 percent of patients aren’t helped by anti-seizure medications, according to the study. Epilepsy drugs include Johnson & Johnson’s Topamax, Abbott Laboratories’ Depakote and Novartis AG’s Tegretol.

“The rule of thumb we use is when patients fail two medications at optimal doses, doctors should consider referring patients,” for the surgery, said Hyunmi Choi, an assistant professor of neurology at the Columbia University Medical Center and the study’s lead author.

To perform the surgery, doctors first confirm that the anterior part of the temporal lobe is causing the seizures, said Choi. If that’s where the seizure begins, doctors remove 2 to 3 centimeters of tissue.

Surgical Side Effects

Side effects of the surgery, which may be performed on children and adults, include complications from anesthesia, some sensory changes, partial loss of vision or speech, or infection, according to the Epilepsy Foundation, an advocacy group.

“The likelihood of patients noticing any cognitive changes are small,” Choi said in a telephone interview today. “Because seizures arise from that part of the brain, it’s dysfunctional already.”

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Stem cells repair stroke patient's brain

A stroke victim has become the first in the world to have his brain damage successfully treated by stem cell therapy.

The International Neuroscience Institute (INI) in Hanover revealed yesterday that the 49-year-old man was treated with experimental stem cell therapy in Germany and has shown no side-effects following the procedure.

He was the first of 20 people to be treated in the trial aimed at showing the therapy is safe for men and women who have had severe strokes.

Prior to surgery, he was suffering from severe paralysis of the right arm and had difficulties in speech and comprehension. Following the surgery, there have been clear signs of improvement from his condition and he has since been discharged from hospital.

Peter Stratford, chief scientific officer for Biocompatibles, the company behind the treatment, said the trial was an important step forward for stroke victims.

"From a patient's perspective this is a very positive development," he said. "We hope that the patients who recover from this surgical procedure will lead as normal a life as possible following treatment and if we can maintain as much of the healthy brain as possible, this is achievable."

Researchers have long been looking for ways to repair the brain damage from strokes, which can cause permanent disability. Studies have shown that transplanting brain cells produced from human embryonic stem cells has helped fix such damage in rats' brains.

In this case, researchers used a type of adult stem cells obtained from a healthy donor which were programmed to deliver a naturally occurring protein called GLP-1, known to protect against brain cell death that follows a stroke.

The man was admitted to hospital in October and diagnosed with a haemorrhagic stroke. He then underwent surgery to relieve the pressure on his brain. At the same time, he was treated with the stem cell therapy, CellBeads.

CellBeads were transplanted within a retrievable mesh device into the brain after the clot was removed. CellBeads protect against lasting neurological damage and are taken out completely after a treatment period of 14 days.

Last month, an artificial airway created from stem cells was used to save a woman's left lung. Mother-of-two Claudia Castillo, 30, was the first person in the world to be given a whole laboratory-engineered airway.

Researchers from the UK, Italy and Spain worked together to grow tissue from Ms Castillo's own bone marrow stem cells, use them to fashion a new bronchus - a branch of the windpipe - and carry out the transplant.

The stroke patient in Germany is under the care of Professor Thomas Brinker from the INI, who said the results were "encouraging".

He said: "We see a path of recovery as good as this only in the minority of patients, so it is an encouraging start.

"It is most important that we found definitively no side-effects from the treatment."

Stroke is one of the leading causes of death among the elderly population in the developed world, with an incidence rate of 145 per 100,000.

Haemorrhagic stroke is responsible for approximately 15% to 20% of all strokes and it is the least treatable form. It is associated with the highest morbidity and mortality rate of all strokes, with only 44% of affected patients surviving the first 30 days.

If the safety trial meets its goal, Biocompatibles hopes to have a larger, international trial under way in 2010 with potential regulatory approval coming as early as 2012.

Mr Stratford said that following the continuation of the trials in Germany, he hopes surgeons in the UK will sign up to participate in experimental stem cell therapy.

Crispin Simon, chief executive of Biocompatibles, said: "We are delighted with the response of the first patient to the CellBeads treatment.

"Stem cell therapy is now advancing across a broad range of medical indications; but as with all ground breaking technology safety is key and it is encouraging that the trial appears to have made a good start in this respect."

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07 February 2009

Physiotherapy Neurological Conditions and Pediatric Disorders

Physiotherapy Neurological Conditions and Pediatric Disorders

13.12.2008 Author: Louis Soul Posted in Health & Fitness

by Louis Soul

Neurological conditions that are autoimmune diseases are difficult to treat. Myasthenia Gravis is one such illness. It causes muscular weakness because of a lack of communication between nerves and muscles. Like other neurological conditions, it can be very debilitating.

MS, one of the neurological conditions that affects the brain and spinal cord, can lead to a long, slow decline. Parkinson’s disease is another of the neurological conditions of the brain. This one can cause shaking and loss of coordination, and problems moving and walking. Physiotherapy offers some relief to these patients.
Many of the patients with neurological conditions cannot carry on daily functions such as caring for themselves and their homes. It is not uncommon for these people to be unable to work. They may even have trouble walking or getting up and down stairs at all.

Life after physiotherapy may be a more cautious affair than is was before. One may have to think before acting. No matter what one does, it is possible that a return to physiotherapy will take place. The best thing to do is to do your best to make all the right moves after physiotherapy.

Pediatric Disorders Help
Torticollis is a type of pediatric disorders of the neck. There is a problem with one of the muscles of the neck so that the one is not able to hold his head up straight. The head will be tilted to one side. This chin will jut out on the opposite side of the neck. Physiotherapy can stretch this muscle so that the child can hold his head more normally.

Spinal cord injuries as pediatric disorders are difficult to treat. Children often do not want to do the work that is required to stay ahead of the deterioration that can be caused by this condition. Physiotherapy personnel are challenged to keep the child’s spirits up as they teach them how to exercise with and without special equipment.

Traumatic injuries require a certain amount of psychological training, as the subject of the accident or other ordeal may bring on such distress that the child does not want to work. A good physiotherapist will be able to work with such a child. Traumatic injuries can also be severe enough that the physiotherapist plans a lengthy course of therapy to overcome them. Pediatric disorders like this require patience from everyone involved.


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Speech-language pathologist

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.

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Drastically Reducing Lazy Eye Treatment Times

Treatment times for amblyopia - more commonly known as 'lazy eye' - could be drastically reduced thanks to research carried out at The University of Nottingham.

Amblyopia is thought to affect up to 2.5 per cent of people and accounts for around 90 per cent of all children's eye appointments in the UK. Occlusion therapy - patching the normal eye for lengthy periods to 'train' the affected eye - is the main treatment for amblyopia. However, this method can be distressing to children, is unpopular with parents and can adversely effect educational development. This type of therapy has been used in various forms since 1743 and has long been considered to only be effective up until late childhood.

The new treatments developed in the Visual Neuroscience Group in the University's School of Psychology have not only reduced potential treatment times by an unprecedented amount, they have also proved that it is possible to treat amblyopia in adults. Early results suggest gains, that would have required around 120 hours of occlusion therapy to achieve, can be produced after just 10 hours.

Adult test subjects have undertaken challenging visual tasks under computer-controlled conditions. Academics hope that these promising results could be used to develop a child-friendly game that could treat amblyopia. There is also the potential to use these new treatments to supplement occlusion therapy.

The ÂŁ60,000 project - A Study of Perceptual Learning Effects in Amblyopia - has been funded by the College of Optometrists. Amblyopia is a developmental problem in the brain, not the eye. The part of the brain dealing with vision from the affected eye develops abnormally as a result of atypical visual experience early in life. This results in markedly different levels of vision in each eye which cannot be remedied with spectacles.

As well as looking at potential treatments for the condition, the study examines the level of neural plasticity in the adult brain - the ability of a neural system to change with experience.

The work is being carried out by Andrew Astle, a PhD student at the University.

"The results so far show a drastic improvement on patching, and disprove the long-held belief that adults cannot be treated for this type of condition," Andrew said. "However, the study is not complete and we're still looking for subjects to take part in the tests."

Work set to start in spring 2009 at the University will build on Andrew's results, examining amblyopia in children and examining the functional and structural organisation of the visual cortex. This EU-wide study has been funded by a European Consortium FP7 grant to the tune of 2.6m Euro. Professor Paul McGraw and Dr Ben Webb in the Visual Neuroscience Group will look at the effects and treatment of amblyopia in children. Other European institutions, including the University of Florence, the Max Planck Institute for Neuroscience and University College London, will examine the condition from the molecular level to its behavioural impact on animal models.

It is thought that results from this study could be translated to other conditions where recovery is limited due to restricted neural plasticity - including brain tumours, stroke, degenerative diseases and trauma.

Professor McGraw said "Andrew's results suggest that the adult amblyopic visual system retains a great deal more neural plasticity than previously thought. Harnessing this plasticity offers a new way of treating this common condition and opens the door to developing novel pharmacological and behavioural interventions for a range of neurological deficits."



About Amblyopia - more commonly known as 'lazy eye'


Overview

Amblyopia is a term used to describe an uncorrectable loss of vision in an eye that appears to be normal. It’s commonly referred to as “lazy eye” and can occur for a variety of reasons.

A child’s visual system is fully developed between approximately the ages of 9-11. Until then, children readily adapt to visual problems by suppressing or blocking out the image. If caught early, the problem can often be corrected and the vision preserved. However, after about age 11, it is difficult if not impossible to train the brain to use the eye normally.

Some causes of amblyopia include: strabismus (crossed or turned eye), congenital cataracts, cloudy cornea, droopy eyelid, unequal vision and uncorrected nearsightedness, farsightedness or astigmatism. Amblyopia may occur in various degrees depending on the severity of the underlying problem. Some patients just experience a partial loss; others are only able to recognize motion.

Patients with amblyopia lack binocular vision, or stereopsis – the ability to blend the images of both eyes together. Stereopsis is what allows us to appreciate depth. Without it, the ability to judge distance is impaired.

Signs and Symptoms


Poor vision in one or both eyes

Squinting or closing one eye while reading or watching television

Crossed or turned eye

Turning or tilting the head when looking at an object


Note: Children rarely complain of poor vision. They are able to adapt very easily to most visual impairments. Parents must be very observant of young children and should have a routine eye exam performed by the age of 2-3 to detect potential problems.


Detection and Diagnosis

When amblyopia is suspected, the doctor will evaluate the following: vision, eye alignment, eye movements, and fusion (the brain’s ability to blend two images into a single image).

Treatment

The treatment for amblyopia depends on the underlying problem. In some cases, the strong eye is temporarily patched so the child is forced to use the weaker eye. For children with problems relating to a refractive error, glasses may be necessary to correct vision. Problems that impair vision such as cataracts or droopy eyelids often require surgery. Regardless of the treatment required, it is of utmost importance that intervention is implemented as early as possible before the child’s brain learns to permanently suppress or ignore the eye.

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Electrical stimulation of the brain a breakthrough in treating depression

PHILADELPHIA – In the late 1700s, Italian anatomist Luigi Galvani made a dead frog's muscles twitch when struck by a spark, a discovery that paved the way for the modern understanding of electricity's role in living things. It is the basis for countless medical technologies like the pacemaker.

But electricity does not travel easily through the skull to the brain, the organ responsible for every purposeful twitch and altered mood. So when a group of British scientists in 1985 used magnetic pulses from outside the head to induce an electrical field inside the brain – and got a subject's hands to move – their colleagues clamored for a chance to zap themselves.

That breakthrough, known as transcranial magnetic stimulation (TMS), led to the Food and Drug Administration's approval last month of the first noninvasive, non-pharmacological treatment for depression.

As a practical matter, approval of the device made by Neuronetics Inc., a five-year-old Malvern, Pa., company, is intended for patients with major treatment-resistant depression who do not respond to any one medication. Millions of Americans fail to benefit from antidepressants, and millions more quit because of side effects.

Symbolically, the federal action is a big deal – another advance in a group of emerging fields that involve electrical stimulation of the brain.

"Our view of the brain is changing," said Mark S. George, a professor of psychiatry, radiology and neuroscience at the Medical University of South Carolina.

Just 10 or 15 years ago, scientists thought of the brain as a single entity – what he called "the brain-as-soup" model. "But really you want to treat specific regions in the brain."

George is editor in chief of a year-old journal named Brain Stimulation, and he is a champion for the cause. After decades of success with psychiatric drugs, he said, "we had forgotten that the brain is really an electrical organ."

Researchers worldwide are testing therapies ranging from highly invasive electrical implants to hardly noticeable magnetic fields on dozens of psychiatric and neurological disorders. Success has been limited – but so are current treatment options.

When a major depression enveloped Ernie Mercer in the late 1980s, Prozac had just come on the market, and it worked. When depression struck again five years ago, it didn't. Neither did Effexor or a third drug. Worse, they made him nervous and constipated.

For Mercer, a retired engineer who lives near Atlantic City, depression was withdrawal from life. "Nothing was fun anymore," he said.

He answered an ad seeking research volunteers for an experimental treatment in 2005.

The clinical trial of transcranial magnetic stimulation went like this: He'd show up at a University of Pennsylvania clinic five times a week, answer the same set of questions about his mood, and then sit in what resembled a dentist's chair for 40 minutes with earplugs in his ears and an apparatus strapped to the top left of his head. He heard loud clicking sounds but felt nothing.

After four weeks, a sensation suddenly matched the clicking – "kind of like somebody tapping on your scalp like 10 times a second," he said – and his depression began to lift. He had been initially assigned to the sham (placebo) group; now he was getting TMS. After several weeks of the real thing, he felt fine. He still does.

Mercer, 65, paid nothing for either the treatment series or twice-monthly maintenance sessions ever since. The research grant ends this month, however, and the clinic will charge him $150 on its sliding scale if health insurance doesn't cover it; most of the clinic's patients are likely to pay at least $200. Insurers are just now beginning a review.

The new treatment is not a panacea. An unrelated study two years ago found that, of patients who failed to benefit from one antidepressant medication, just one-third responded adequately to a second. TMS produced a similar response rate (as does talk therapy, according to other studies), although the effect was described as greater.

The biggest difference is side effects, which cause many patients to stop taking antidepressants. The most commonly reported side effects to the brain stimulation were headaches and scalp irritation, both temporary.

TMS poses a slight risk of seizure. No incidents were reported in data on 10,000 sessions submitted to the FDA.

Neuronetics didn't seek approval to treat all major depression; when antidepressants work well, they are hard to beat. Still, the FDA rejected the initial application last year to use the NeuroStar TMS device for treatment-resistant cases generally.

A reanalysis of data on the 301 patients in the multicenter trial found the strongest response among those who had tried and failed with just one drug, and that's what the agency approved. Patients like Mercer, who gave up on three, can be treated "off label," which may be less likely to qualify for reimbursement.

Psychiatrist John O'Reardon, who ran the Neuronetics-funded trial at Penn and is beginning to study TMS for Attention Deficit Hyperactivity Disorder in adolescents, believes that many people who can't tolerate antidepressants will find this easier despite the inconvenience of 20 to 30 daily sessions.

"They come in and sit in the chair, we slap a magnet on their head for 30 minutes, and afterward they can go home," said O'Reardon, director of Penn's Treatment Resistant Depression Clinic.

Magnet therapies have been advertised for years, usually to relieve pain, but have not been proved to work in rigorous trials. Most rely on simple, static magnets. The electromagnet in the new device is thousands of times more powerful, similar to that of an MRI, said Neuronetics chief executive officer Bruce Shook.

In repetitive transcranial magnetic stimulation (rTMS), rapid series of pulses pass through the skull and induce an electrical field on the surface of the brain, exciting the neurons below.

For depression, the target is a postage stamp-size part of the left prefrontal cortex that is less active in depressed people. Scans confirm more activity after successful treatment of any kind, although the exact mechanism is not known.

The therapy is being studied for post-traumatic stress; obsessive-compulsive and panic disorders; fibromyalgia; and other conditions.

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New Applications for Cognitive Training

WASHINGTON, Nov 21, 2008 /PRNewswire via COMTEX/ -- New inventions in computerized brain training may help people with a variety of cognitive disabilities lead fuller lives, said Jeff Zimman, Chairman of Posit Science(R) Corporation. Zimman presented today at the annual Technology Innovators Conference in Washington, DC, a meeting organized by The National Center for Technology Innovation to promote innovation to assist people with disabilities.

Zimman said cognitive training programs can assist millions of people in performing at higher levels of cognitive function and have better quality of life. Posit Science technology incorporated in its Brain Fitness Program(TM) and Insight(TM) products has been shown to improve cognitive function in healthy adults in a number of published studies. Now, research has been expanded to a wide range of neurological conditions, including traumatic brain injury, schizophrenia, stroke, geriatric depression, mild cognitive impairment, dementia, and chemobrain.
"There are now more than 30 published papers on the use of our technologies in randomized controlled trials," Zimman said. "Those peer-reviewed articles show that our technologies enable most people to think faster, focus better and remember more. We believe there is great promise in using this non-invasive technology to address many cognitive impairments."

Posit Science has sold more than 100,000 units of the Brain Fitness Program, which improves auditory processing and memory, in the past two years and recently introduced a new version of its visual processing and memory program, InSight 1.1. Two current PBS documentaries, "The Brain Fitness Program" and "Brain Fitness 2" feature these two training programs and the company's science and scientists.
About Posit Science:

Posit Science is the leading provider of clinically validated brain fitness programs. The company works with more than 50 scientists from prestigious universities to design and test its computer-based programs. More than 30 published papers show that in randomized controlled trials the company's patented technologies significantly increase processing speed, improve memory and attention, and enhance the quality of everyday life. Posit Science has received grants from the National Institutes of Health and has received numerous awards and accolades. The company's products, scientists and science are currently featured in the PBS documentaries "The Brain Fitness Program" and "Brain Fitness 2: Sight and Sound." For more information, visit http://www.PositScience.com or call 1-800-599-6463.
SOURCE Posit Science
http://www.positscience.com

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Hope for those trapped in unreal world

Schizophrenia, on the other hand, is a thought disturbance and the major symptoms are hallucinations and false beliefs.

Several factors are involved in mental illnesses. A person may be genetically predisposed or may have some problems in his brain neurotransmitters. The mental illness may result from brain trauma or injury, or may be triggered and perpetuated by environmental factors such as substance abuse.

Advice to families

If you have a family member suspected of suffering from any of these maladies, Ponio said the most important thing the family needs to do is to educate themselves about the illness of their loved one.

“This is the reason we invite them to attend Family Link for them to learn from people in recovery. If that is not possible, there are many other sources of information, Ponio said.

Health workers, especially doctors, nurses, psychologists, social workers and even the Internet can provide valuable information.

“If their loved ones are already undergoing treatment or are being attended to by a doctor (psychiatrist), they should not be embarrassed to ask questions because that is the only way that they can help,” Ponio said.

She reiterated that mental illness like any medical condition can be treated and recovery is possible. “Stella is just one example. There are, and there will be, many others like her.”

Poor families who have no budget for therapies can go to the National Center for Mental Health at Nueve de Pebrero in Mandaluyong City, or to many other tertiary government hospitals that offer affordable psychiatric services. They can also look for the Philippine Mental Health Association in their area and they can get its services for free.

Ponio revealed, however, that more mental health professionals are needed. “We definitely need more psychiatrists (nationwide, there are only about 400) and this is the reason I always emphasize that it is always a team that needs to work together to help because we psychiatrists cannot do everything that need to be done,” she said.

According to the data obtained by the Inquirer, the World Health Organization predicts that by 2020, major depression will be the second leading cause of disease burden in the world.

The WHO Mental Health and Substance Abuse Department provided the following 2006 data:

‱ There were 450 million people worldwide suffering from mental, neurological and behavioral problems.

‱ Seventy million people suffered from alcohol dependence.

‱ Twenty-four million had schizophrenia.

‱ Ten to 20 million people attempted suicide and 873,000 actually died from it.

For those interested to sponsor a scholar or for scholarship inquiries, call Family Link Philippines at 643-6056, 640-8395 or 6435788, local 110.

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Risks of online stem cell clinics

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.

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Friends in need break taboo's

An open day at a Liverpool centre will help us understand how people overcome brain injuries and neurological conditions to live full and rewarding lives. David Charters reports

ON A morning when the sky promises sleet, three women meet under comforting lights in the cafe of a building off the main street for a nice cuppa and a chat about all the usual things.

You know, Christmas shopping, silly celebrities on TV, the weather; yes, the eternal weather – and how one of them began suffering from serious epileptic seizures after her beautiful baby sister died and how the second was almost killed by a hit-and-run driver, who left her bleeding on the Tarmac.

The third just listens, occasionally squeezing the arm of one of the others, the way that women do when they are offering encouragement to a friend telling a story.

And “friend” is the right word here on Norton Street, just off Liverpool’s London Road, where the traffic of the day is passing in grey anonymity. This is the headquarters of Neurosupport, a charity established to provide non-clinical help to people with neurological conditions including the diseases known as Alzheimer’s, Huntingdon’s and Parkinson’s, strokes, migraine, epilepsy, brain tumours and brain injury, as well as anything affecting the nervous system.

There is still a taboo in some circles about mentioning that something has happened to the “brain”, as though its existence is unconnected to the rest of the person; so we use expressions like “a problem upstairs”, while nodding sagely, instead of addressing the facts.

But, on Tuesday, Neurosupport is holding an open day to enable the public to find out more about its work. Exhibits will include a short film, photographs, paintings and poems, all done by people associated with the centre, many of whom have neurological conditions.

And there, sitting in the comfortable lounge with their cups of tea, are Dorothy (Dot) McCarthy, 51, a clerical officer with a housing trust, who is married to Peter, a JCB driver, with whom she has a daughter, Louise, 29; Natalie Shaw, 26, a part-time assistant at Debenham’s store; and Maureen Kelly, 55, the centre’s manager and a mother of two.

The mood is convivial, but Dot is about to tell a harrowing story. Her language is vivid, but it needs to be if you are to understand just a little of what she has experienced and how, as a result of that, spells of day-dreaming grew into full epileptic fits (grand mal).

At the time, Dot was nine and living in council flats in Leasowe, Wirral. One day she was returning home from the local school. She squeezed through railings to take a short-cut home and saw blood on the concrete beneath the window of their flat. Dot’s little sister, Suzanne, two, had fallen from the window.

Her body had been taken back to the flat. “But my mum was coming down the stairs with what looked like a bundle of rags when I arrived. It was my sister,” recalls Dot.

Within seconds, a happy and loving family had been cast into the deepest grieving – the parents, Billy Lines, a building worker, and his wife, Betty, as well as Dot’s five other brothers and sisters. “I used to have little day-dreams, but they never put that down to anything at the time, until I had the full seizure when I was nine,” says Dot. “My behaviour changed, but in those days they didn’t associate behavioural patterns with epilepsy. I was just a naughty child.”

As a result of this, the authorities sent Dot to a boarding school in Somerset, and then another one in Wales.

She was very unhappy and badly treated at both. Dot says that it wasn’t until she was 13 that her parents learned the full extent of her epilepsy, though unsympathetic staff at the boarding schools had referred to her as being “zombie-like”.

As standards of treatment and diagnosis improved, Dot, who later passed GCSEs in sociology, psychology, English Literature and English Language, was treated with drugs to control her condition. But she developed TB and required drugs for that. The doctors decided that these should not be mixed with her epilepsy drugs, which were stopped altogether. For 24 years, the fits stopped.

“And then, for some unknown reason, I had five fits and had to be sent to hospital,” says Dot, who now lives in Moreton, Wirral. “They started happening again after that and I was put back on medication.”

As part of her treatment, Dot started coming to Nerosupport. At the centre, clients can attend courses appropriate to their own condition, particularly “confidence building”, which is crucially important to recovery. They are also linked to sympathetic employers. More than that, it is just a good place for people to meet and talk.

“I have had help in work regarding my epilepsy, basically showing them that because I have a condition, it doesn’t mean that I can’t do a good job,” Dot says.

She was referred to the centre by the Epilepsy Society. “The main thing for me has been understanding that I have a condition and not an illness,” she says. “When I was little, I was told that because I was ill, I had to go away. I was just a naughty girl, who was bad-tempered, but now I have been re-educated. I know that I am like everybody else.

“Suzanne’s death was so traumatic. We were all very affected by it. How else could you have been? T he people here listen to me and talk to me and they have explained what could have happened to me, to help me come to terms with it. It has been like learning all over again.”

The condition is under control again, though Dot still receives the auras, the sensations of deja vu and a sickly taste in her mouth, which can be the prelude to an attack.

She attended the centre twice a week, as did hit-and-run victim Natalie, who received multiple head and body injuries after enjoying a Mother’s Day celebration in the city centre in 2003. These injuries were so serious that there were fears she would die, but after specialist treatment she slowly recovered.

Before the accident, Natalie, from the Vauxhall neighbourhood of Liverpool, was an enthusiastic amateur song-and-dance performer, who had been studying for a career in business, administration and marketing.

She was referred to the centre two years ago. “All the staff here are great. I get on with them all,” she says. “The people at Debenhams have also been great. The confidence-building and just coming here has really helped me.”

Three women finish their tea. They have different needs and ambitions, but each has a life to enjoy. Soon they will meet again, as friends do.

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Science of Sleep

Sleep disorders are common in U.S., and experts are concerned

Billie Jean Hemelstrand, 65, of Christmas Valley, settles in for the night last week at the High Desert Sleep Center in Bend. Hemelstrand underwent her second sleep study at the center to test the effectiveness of a continuous positive airway pressure machine to prevent her sleep apnea. Experts say millions of Americans are getting their sleep problems checked out, reducing the risk of serious health complications.

During a sleep study, doctors attach electrodes to the patient to track heart rate, breathing and brain waves. The results can be used to diagnose what might be preventing patients from getting a good night’s sleep.

Technicians at the High Desert Sleep Center in Bend fit an oxygen mask on Billie Jean Hemelstrand last week. The mask helps keep her airway open. Patients with untreated sleep apnea can wake up 200 times a night, leaving them far from rested the next morning.

Dr. Theresa Buckley, one of the doctors of the High Desert Sleep Center


Tips for a good night's sleep
Set a schedule: Go to bed at the same time each night and get up at the same time each morning. Sleeping in on weekends disrupts your sleep cycle and makes it much harder to get up on Monday morning.Exercise: Try to exercise 20 to 30 minutes a day. There’s conflicting evidence whether exercising later in the day interferes with sleep.Avoid caffeine, nicotine and alcohol: Caffeine, in coffee, sodas and some medications, is a stimulant that keeps people awake. Smokers tend to sleep very lightly and often wake up early due to nicotine withdrawal. Alcohol robs people of deep sleep.Relax before bed: A warm bath, reading or other relaxing routine can make it easier to get to sleep.Sleep until sunlight: If your schedule allows, wake up with the sun or use very bright lights in the morning. Sunlight helps the body’s internal clock reset itself.Don’t lie awake in bed: If you can’t get to sleep, get up and do something else until you feel tired. The anxiety of being unable to fall asleep can contribute to insomnia.

Control your room temperature: Extreme temperatures may disrupt sleep or prevent you from falling asleep.See your doctor if your sleeping problem continues: If you have trouble falling asleep, night after night, or if you always feel tired the next day, you may have a sleep disorder. Talk to your primary care physician about a referral.

Every morning, millions of Americans roll over to turn off the alarm and dig deep to find the motivation to drag themselves out of bed. Tired, sleepy, even downright exhausted, they plod their way through another workday, another round of shuttling kids to after-school activities, another evening of the myriad tasks that must be completed before bed. Then the few hours of the night that remain — the spare change left of the day’s dollar — they give to sleep.

Sleep experts warn that America has become a sleep-deprived society and is suffering significant health and economic consequences. “With Americans working such long hours — on top of their other responsibilities like childcare and household maintenance — something has to give. Unfortunately that something is usually nighttime sleep,” said Darrel Drobnich, acting CEO of the National Sleep Foundation. “People tend to give up sleep, when getting a good night’s sleep should be at the top of everyone’s list to ensure maximum daytime performance both at work and home.”

According to the National Institute of Neurological Disorders and Stroke, the widespread practice of burning the candle at both ends in Western industrialized societies has created so much sleep deprivation that what really should be abnormal sleepiness has become the norm.

Now sleep specialists are making a push to educate Americans about how crucial it is to get sufficient sleep and how to identify bad habits or sleep disorders that are getting in the way. Your health and well-being, they say, depend on it.
“That time might be the most important of your entire day,” said Dr. David Dedrick, a sleep disorder specialist at the High Desert Sleep Center in Bend. “You may have done everything right, in terms of exercising and (eating a healthy diet), but if you didn’t get the right quantity and quality of sleep, you may have really missed the boat.”

Pillow time
Dedrick said most people need seven to eight hours of sleep a night. Yet, in a recent survey by the National Sleep Foundation, adults said they sleep on average only 6 hours and 40 minutes per night, about three hours less time than they spend working.

Nearly two-thirds of those forgoing sufficient sleep said they just accept their sleepiness and keep going, while another third rely on caffeinated beverages to get them through the day. More than half said they try to catch up on their sleep during the weekend.

But Dedrick said the notion that you can catch up on sleep is a fallacy. “Once the brain has gone through a night of insufficient amount of sleep, there is probably a measurable, albeit small, loss in neurological function,” he said. “It’s small, but over cumulative amounts of time, if you’re somebody that consistently does this, you’re doing damage to your brain.”

Studies document that insufficient sleep leads to worse productivity and more absences from work or school, a higher risk of work-related injuries, and a severe toll on well-being. A poor night’s sleep can negatively affect mood, attitude, energy, memory and overall outlook on life.

People suffering from sleep deprivation test worse on driving simulators than those who are intoxicated, and the National Highway Traffic Safety Administration estimates that 100,000 motor vehicle accidents and 1,500 deaths each year can be attributed to driver fatigue.

Shortchanging yourself on sleep has been linked to serious health consequences, including a higher risk for diabetes, heart disease and obesity.
Meanwhile, getting extra sleep seems to provide tangible benefits. Swiss researchers analyzed 20 years of health records and found that the number of heart attacks dropped on the Monday after daylight savings time ends. The researchers said the dip could be due to the extra hour of sleep. Mondays typically have higher rates of heart attacks, and many sleep experts believe that reflects changes in sleep schedules over the weekend. When people sleep in and stay up later on the weekend, the 6 a.m. alarm on Monday mornings might be particularly taxing for the body.

How sleep impacts the body is still poorly understood. Many sleep experts believe that sleep provides the opportunity for brain neurons used while we are awake to shut down and repair themselves. Without sleep, neurons may become so depleted of energy or so polluted with byproducts of normal cellular activities that they can’t function normally.

Dedrick likens the body to a skyscraper in which workers toil away during the day and a cleaning crew comes in during the night to vacuum, take out the trash and fix the broken equipment. If that nightly support staff goes on strike, soon the equipment breaks down and the trash piles up. “If you don’t give enough time for your night crew to come in and do their job, you’re not going to be able to work very well,” he said. “People often think of sleep as this passive process where your body is not doing anything. Actually, your body is incredibly active.”

The National Center on Sleep Disorders estimates that 50 million to 70 million Americans suffer from sleep problems. As a result, millions of people go through their day wondering why they can’t stay awake or go to bed wondering why they can’t fall asleep.

“People are notorious for underestimating how sleepy they are,” said Dr. David Kuhlmann, medical director of sleep medicine at Bothwell Regional Health Center in Sedalia, Mo., and a spokesman for the American Academy of Sleep Medicine. “People assume that their disrupted sleep and level of sleepiness when awake is normal for their age.”

Dedrick said that sleep patterns do change as people age. From ages 20 to 40, people tend to sleep pretty well in the absence of poor sleep habits or medical problems. From ages 40 to 60, sleep quality tends to decline, with less deep sleep and more awakenings during the night. “From age 60 and beyond, your sleep should be at baseline what it is, and it should be relatively good,” he said. “If it’s not, you can’t blame your age.”

Like father, like son
And it’s not just adults who aren’t getting enough sleep. A study published this week by researchers from the University of Montreal found that at least 30 percent of children between 6 months and 6 years of age have difficulty sleeping six consecutive hours. Those that got less sleep were more likely to be obese or hyperactive.

The researchers found that 25 percent of children who slept fewer than 10 hours were overweight, compared with 15 percent who slept for more than 10 hours, and 10 percent among those that slept at least 11 hours.

“When we sleep less, our stomach secretes more of the hormone that stimulates appetite,” said Dr. Jacques Montplaisir, a lead author of the study. “And we also produce less of the hormone whose function is to reduce the intake of food.”
And, Montplaisir said, unlike adults who just get sleepy, children get overly excited when they are tired. The study found that 22 percent of children who slept for less than 10 hours were hyperactive, double the rate of those who slept 10 to 11 hours per night.

Insufficient sleep also affected their performance on cognitive tasks. Some 41 percent of the children who didn’t get enough sleep scored poorly on a cognitive test, compared with 17 percent to 21 percent of children who slept 10 or 11 hours per night.

Many sleep experts believe that a certain percentage of children diagnosed with attention deficit/hyperactivity disorder may simply be short on sleep. And when those children are medicated, it often further disrupts their sleep patterns.
Most teens aren’t getting anywhere near the eight to 10 hours of sleep recommended either. Their tendency to stay up late, get up early and try to make up the sleep on the weekends is a recipe for disaster, said Dr. Ruth Benca, co-director of the sleep research center at the University of Wisconsin School of Medicine and Public Health.
“Kids who have an ongoing shift in their sleep patterns often have poor school performance and problems with depression and cognition,” she said. “Kids who go to bed earlier during the week feel better and perform better in everything they do.”
Benca said the body’s circadian rhythms, the cycles that govern sleeping and waking, start to change during puberty. Teens naturally become “night owls,” she said. But societal factors exacerbate the problem. Evening activities, as well as late-night Internet surfing, texting and TV time, often keep teens up even later. And with more activities outside of school, such as sports or clubs, many kids are getting up earlier as well.

“Some kids are getting up at 5 a.m. to fit these activities into their schedule,” Benca said. “Needless to say, they’re getting pretty sleep-deprived.”

Identifying problems
Dedrick said many sleep problem for adults and children can be linked primarily to bad habits. For example, many of his patients spend time checking their e-mail right before going to bed.

“What happens is you get on the computer and the bright light from the computer screen tricks your brain into making you think it’s daytime,” he said.
Other people turn to alcohol as a nightcap to help them sleep. That’s another bad idea, Dedrick said.

“The problem with any drug, alcohol included, is the withdrawal of the drug leads to an opposite effect,” he said. “Alcohol is a sedative and it may help you fall asleep, but when it wears off, it’s opposite sedation, it’s activation.”
As a result, people fall asleep fine, but at 2 a.m. are wide awake.
Dedrick said other strategies for getting a good night’s sleep involve getting plenty of exercise, which boosts blood flow and oxygen to the brain, and establishing a regular schedule for sleep.

“We have a very callous attitude toward sleep, that sleep is a waste of my time, that it cuts out of my productivity at work. All of that is horribly wrong,” Dedrick said. “We’re sort of shooting ourselves in the foot.” Doctors like Dedrick can also identify more serious medical conditions that could be interfering with sleep. One in seven Americans, when they fall asleep, have trouble keeping their airways open, shutting off their supply of oxygen. The condition, known as sleep apnea, forces the brain to wake up to re-establish airflow.

“If you have unstable airflow while you’re asleep, it becomes de facto almost impossible to get a good night’s sleep,” he said. “Because the brain, instead of totally checking out and resting, is having to wake up over and over and over again.”
The awakenings are so brief that most people are not aware of it, but they break up sleep quality.

“It’s not unusual for us to find that 200 to 300 times per night,” Dedrick said.
Doctors have come to realize that untreated sleep apnea can be lethal, often leading to heart failure and sudden death. A study published earlier this year suggested that people with severe, untreated sleep apnea have five times the risk of dying from a heart problem. And often, patients are unaware they are affected.
Marta Izo, a surgical floor nurse at St. Charles Bend who is in her 50s, said she never really felt she wasn’t getting a good night’s sleep, but went for a sleep study at the High Desert Sleep Center after her husband told her she was snoring more at night.

There, technicians wired her to track her heart rate, oxygen flow and brain waves during the night. “Evidently, I had very bad sleep apnea, my pressures were super duper high,” she said. “I never really felt like I was sleep deprived. I wasn’t falling asleep during the daytime. I wasn’t doing what typically you would think a patient would do that had severe sleep apnea.”

Izo was given a continuous positive airway pressure machine, which provides a flow of air that keeps the airway open. It took some time to get used to the machine and the noise it made. Izo had to work with technicians at the sleep center to find the right combination of machine, mask and fit. “I do think my quality of sleep is much better. I dream now, which I was never dreaming before,” she said. “I think probably mentally I’m a little bit sharper.”

As a nurse, Izo sees many patients that suffer from sleep apnea and are overweight or obese. But Izo said she’s run across just as many people with reasonable weight, just like herself, who have sleep apnea. And despite her medical training, she said she never realized just how dire the consequences of not treating sleep apnea could be. “My husband, he complained about the fact that I snored, and then he complained about the sound of the machine, I just told him what the doctor told me. ‘Would your husband rather be taking care of you after you have a stroke?’” she said. “That made me sit up and take notice. I don’t want him to have to take care of me after I have a stroke.”

It’s worth talking to your doctor if you suspect you might have a sleep problem, she said. Most health insurance plans cover the cost of such sleep studies, although most require a referral from a primary care physician. Home sleep testing is also available, but it generally records less information and focuses solely on sleep apnea. While public awareness of sleep apnea is increasing — Dedrick said referrals spiked after former professional football player Reggie White died of sleep apnea several years ago — public health experts say most people still aren’t getting potential sleep problems checked out.

Two years ago, the Institute of Medicine issued a report calling for more attention
and research into sleep disorders. The group said the nation has neither the understanding nor the capacity to fully treat the 50 million to 70 million Americans with sleep disorders. “What your grandma told you about getting a good night’s sleep, what seems to be good common sense, is now panning out in the scientific data to be far more important than we’ve ever been aware of,” Dedrick said. “It’s kind of an amazing health revolution that’s going on right now.”

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Scientists shed light on causes of epilepsy

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."

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Brain Research May Produce Results In Classroom

On her back in a dark tube, Blair Smith held still as a scanner combed her brain with magnetic waves. Words flashed by her eyes: tack, vase, hope, glow, vague, cade.The 11-year-old had been told to press the button in her right hand if the word was real, the button in her left if it was nonsense. The answer itself was less important than the map the scanner would make of which areas of Blair's brain lighted up when she struggled with a word.The aim of the study, said Laurie Cutting, director of the Education and Brain Research Program at the Kennedy Krieger Institute in Baltimore, is to understand the neurological differences among students who are skilled readers, those who have difficulties and those with diagnosed learning disabilities.If neuroscientists can pinpoint which parts of the brain are activated when a reader puzzles over an unknown word, they may eventually help teachers tailor reading instruction for individuals.

That is only the beginning. Many educators hunger for scientific data to help them structure their lessons, and neuroscience is beginning to offer them broad guidance about what works best. One of the most startling recent revelations in neuroscience has been that the brain's structure is much more flexible than was previously thought; this may help teachers find ways to train the brain to better solve math problems or understand a book.

"There's an awful lot that neuroscience can begin to tell us in broad strokes that's relevant for education and that ultimately 10 or 20 years downstream can provide us with prescriptive information," said Robert Pianta, dean of the University of Virginia Curry School of Education."I think we're looking at a period of five years of very rich territory for investigation here."Brain research already is opening the way to help teachers detect and address complex conditions — such as attention-deficit hyperactivity disorder, dyslexia and its mathematical cousin, dyscalculia — that defy blood tests and other simple medical diagnostics.

Cognitive scientists are developing a theory of "micro-development" that could turn some lesson plans upside down. Studies have found that, on a minute-to-minute basis, children and adults learn in fits and starts, often going backward. That could indicate that students should be allowed to grope their way to understanding, for instance, by being asked to power up a light bulb using a battery and a strand of wire before having the theory of electricity explained to them.How the brain functions remains deeply mysterious, with studies seeming to unfold at a glacial pace.Still, top educational institutions have recently shown new interest in the link between brain activity and education. Johns Hopkins University this year briefed the Maryland State Board of Education on a neuro-education initiative that aims to "explore how current findings have application to educational practice."

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Computerized writing aids make writing easier for persons with aphasia

February 03, 2009

It is possible to improve writing skills for those with aphasia with the aid of computerised writing aids. This is the conclusion of a doctoral thesis from the Sahlgrenska Academy at the University of Gothenburg, Sweden.

Aphasia affects the ability to understand and use spoken language, and the ability to read and write. Persons with aphasia were trained in the use of computerised writing aids in the study on which speech and language pathologist Ingrid Behrns' doctoral thesis is based. The subjects were aided by a computer-based spell-checker and a program for word prediction, similar to that used when writing SMS messages on mobile telephones.

The thesis shows that writing ability improved in several ways with the aid of these programs.

"A fairly high reading and writing ability is necessary in order to benefit from the most common spell-checkers. So we used two writing aids that have been specially developed for persons with dyslexia, instead. These programs were also useful for persons who have writing problems arising from aphasia", says Ingrid Behrns.

The programs are easy to use and cheap to purchase, and may be beneficial for many people who have aphasia. The greatest benefit for those who were members of the group receiving writing training was that it became easier to make corrections in what they had written. They also wrote longer sentences with fewer spelling errors.

"But is important to remember that time must be invested in learning how to use the computer programs. It was particularly encouraging to find that it is possible to improve writing ability even though several years have passed since the participants developed aphasia", says Ingrid Behrns.

Previous research into writing ability and aphasia has focussed on the spelling of single words, but the work presented in the thesis investigated not only the completed text but also revisions that were made when writing a story. This makes it possible to see the aspects of the writing process for which the writer has had to use most energy. The thesis also shows that persons with aphasia can write stories with high coherence and a good overall structure, despite their language difficulties. The results also show that it is sometimes easier for persons with aphasia to express themselves in writing rather than in spoken language.

"The good results from the writing training are very encouraging since the ability to express oneself in writing opens many possibilities for communication using the Internet", says Ingrid Behrns.

APHASIA: Aphasia is a collective term for language difficulties that can arise after a stroke, for example, or from head injuries such as may be suffered in a traffic accident. Older persons are affected more often than younger, but aphasia can affect persons of any age. A person with aphasia has difficulty understanding, speaking, reading and writing, while their intellectual abilities are not impaired in any way. Approximately 12,000 Swedes are affected by aphasia each year.

University of Gothenburg

Printed from: http://www.brightsurf.com/news/headlines/42875/Computerized_writing_aids_make_writing_easier_for_persons_with_aphasia.html

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BrightSurf.com Science News
brightsurf.com

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06 February 2009

Promise of The Park

REVIEW
It is earlier than you think because so many of us have spent our lives watching the struggle for inclusion, unfold, and by the grace of God, triumph. It is very easy to fall into the misunderstanding, that no one was thinking about "our issues" prior to 1973. It was my pleasure, to learn that this is not true at all.

On Oct. 11th I observed "Promise of the Park", Ms. Leslie’s Fanelli’s time traveling tale, of the first park, open to everyone, in New York City’s central park, and it’s maverick Creator, Frederick Law Olmstead Sr. The park, took sixteen years to build, and opened in 1873, a century before the rehab act, laid the foundation for equality in education. Mr. Olmstead had designed a fully accessible park, trough the use of, sunken trails. He would design hundreds of parks, play a major role in the Colombian exposition, and,even create the McClean psych hospital,in Massachusetts where he spent his last few years following dementia.
He was ahead of his time there also, encouraging bright airfilled treatment rooms, in place of the stark cells of the era. This hospital is best known as the real life setting, for Susanne Kasyenne’s Girl Interupted. This genius, saw the need, to use public spaces to bring people together. In a time, when any concern for the non elite was dismissed as radical, or dispensed with the disdain of paternalistic disengagement, a place for all human kind, black and white, rich and poor, was unheard of. Even before he sustained his permanent limp, from a carriage accident, he understood the need to intergrate those with impairments, into his parks, and by extension the larger society.

The play, is executed in a whimsical, yet compelling manner, like all of Ms. Fanelli’s work. Her teenage persona and her friend and conscience, Amy, played with zest and humor by, Ms. Amelia Foweler, are having a picnic in the park, when too their disbelief they encounter Olmstead himself, who has traveled through time, to see his beloved child, in our world. Initially, they cannot believe this person, whom they have never heard of, is anything more than an actor, or confused soul; but he is able to convince them, and the three share a journey into the park’s creation and their own environmental development. The lion Olmstead, brought to life, by Mr.William DemBaugh, combines wonder at this new world, he believes planes are a new bird, with a desire to teach, and mentor the young people to protect this treasure he has given to them. Mr. Dembaugh is careful, to show the audience the master’s forward thinking without making him an archaism. He is a man of his time, a patriarch before we knew what that meant.

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Parkinson's Dance Therapy



Following this video I had an email from a visitor watching this who very kindly told me about his blog and as given me his web address which I want to share share with you all. Read about his life

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05 February 2009

Disability Pride

My friends, as a community of unique people, it is a great source of encouragement to become aware that we are not alone in carving out a place for ourselves in this world. As a historian, I take inspiration and encouragement from finding links between the past and the present. It was therefore, a great pleasure to discover parallels between the creator of this website, and an even earlier pioneer of the movement for inclusion, noted architect, Frederick Law Olmsted.


Karen took on the organized establishment, and their corrupting limitations about what was manageable and possible for a woman with cerebral palsy.



By learning to dance, fighting to earn a college degree, against overwhelming opposition, and refusing to settle for an isolated mediocre, she is restoring our hopes, and giving strength to our dreams.


Frederick Law Olmsted, himself a person with disability, as the result of an injury, had for the nineteenth century, an overwhelmingly progressive viewpoints on the role which people should play, in the lives of their community. He designed central park, in New York, and hundreds of others throughout the nation, as showplaces, "people’s parks" fully accessible, and open to all, an unheard of idea for the 1870’s!


Here, rich, and poor, young and old could spend time in rich surroundings in harmony. Leslie Fanelli’s masterwork "Promise of the Park" details his quest to build Central Park, and his commitment to providing gathering points, for people far more joyous than the graveyards, in which most of the people could gather on Sunday’s their one day off.


"Promise of the Park", details the story in musical format in Ms. Fanelli’s usually brilliant style. She shows through the teenage minds of Amy and Leslie her joint protagonists, what Olmstead saw as his vision, how he took on the ruling class of the glided age, to create an oasis of peace in the blusting city. Eighty five years before "Salient Spring", Olmstead had a holistic vision of environmental harmony, and conservation.


For a person of his disability to be active in this era, was unheard of. But Olmstead, like Karen dug in his heels, and remained true to his better self. I ask every reader of this blog, to give careful attention to my dear friend, Ms. Fanelli, as she shares a review of her fabulous work
 Sean Dineen


"Disability Pride" is an exciting new music CD by Theatre in Motion! This beautiful, robust music appeals to not only the millions of folks with disabilities, but also to their families and friends. Musical Theatre that is intergenerational appealing! Anthems of the Disability Rights and Disability Pride Movements!


Broadway’s Harold Prince declared, "What a feel-good project . . . You and your colleagues deserve such praise."


The Honorable Judith Huemann wrote, "Beautiful music and history sung by disabled activists. This will be a wonderful addition to the Disability Studies movement. A great gift for anyone who likes good music."


Available at http://cdbaby.com/cd/theatreinmotion2
Theatre in Motion is an award-winning theatre company that features intergenerational creative and performing artists with and without disabilities–serving inclusive, intergenerational audiences.






Tracks for "Disability Pride"
1 Disability Rights
2 Disability Boogie Woogie
3 Lake Erie
4 My Wheelin’ Chair
5 History Of The ADA
6 We’ll Speak Out
7 Let’s Reach An Understanding
8 Rolling To Washington

9 Disability Rights (reprise)

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February is upon us once again


Were have the days gone? It was Christmas only 2 months ago! In the hectic lives we all live and lead, we eagerly just keep turning the pages of time. The moments don’t stop for us, or for our convenience, they continually keep on ticking. Tic, tic, tic. Daily we look at our calendar’s. We look to see what we have scheduled and penciled in for that particular day.

Rarely do we stop for a second, to take a moment to smell the fragrances before us. We don’t stop to listen to the quit, stillness in the air. Still, we seldom stop to focus in on the unseen and the unspoken. We certainly don’t stop to mark or jot down those treasured seconds. We get caught up in the moment, deterring us from what’s really important to us. Too fast, the moments slip by. We forget to think about all the precious things that we are grateful, for. We forget about nice things that are said and done. Before you know it, in a blink of an eye; years and decades have past us by. Things that were once so very important to us, have melted away like the glaciers in the most high.

Now, the sweet ,sugar, coated aromas of the canopy fill the air. Red and pink pedals of roses are in plenty, and lovers will soon croon the tune "unforgettable." The card store’s will be creeping with people hustling to hone in on the perfect card and gift. People will crowd the restaurants to celebrate Anniversary’s, birthday’s, and especially valentines day.

These celebrations are a reminder to value what is really important in our lives, which is time spent with those we love. In looking back, it is that which we remember.

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02 February 2009

Interview with Solid Rock Radio

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01 February 2009

HANDLE Institute

Event in February more information

LOGICALLY ILLOGICAL
Information and insight into autism
Ros Blackburn
4:15pm – 6:15pm

Ros Blackburn is an adult with autism. At three months old she appeared withdrawn, isolated and very much in a world of her own. At eighteen months she was diagnosed very severely autistic but with average intellectual ability. Now at 39 Ros lectures nationally and internationally giving insight into her own experiences and the care and education practices she has observed. In spite of the severe limitations imposed by her condition, Ros displays great courage (and a strong sense of humour) in facing her fears and tackling life’s challenges.

In this talk Ros will draw on her experience of living with severe autism and her considerable experience both as a recipient of services and increasingly as an observer of education and care approaches. Ros brings a perspective that is unique and yet speaks to all her audience: people with an autism spectrum disorder, carers, families, educators and the planners and providers of these services. Ros tells it ‘as it is’. She does not disguise the fear and limitations which are part of her daily experience. Yet she is also able to convey her wonderful capacity for fun and zest for life and her refusal to accept ‘second best’ for herself or for others. She describes the approach taken by her parents to give her what she now describes as the ‘veneer of social competence’ that enables her to engage in a still largely autism-unfriendly world. She explores with humour and passion the ‘mistakes’ from which she has had to learn and some of her coping strategies. From these she is able to offer helpful advice on practical strategies (and even more helpful advice on what not to do!) Her talk also illustrates the problems of having an uneven profile of strengths and weaknesses, where often the strengths mask her very real difficulties and needs. She does not advocate any one approach except that we should remember that people with ASD are people too and that ‘common sense’ should apply. Her position can best be summarised as an insistence on the need for high expectations for people with ASD linked with equally high levels of support. In a quote from her mother, Ros pleads that one should ‘never make autism the excuse, but help the person overcome the problems caused by it’.

Finally, it is Ros’ wish that all those who attend her talks find them helpful and informative but above all that the experience is entertaining and full of fun.

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Generation’s of Perception

Sitting in the quiet solitude of my own four walls, my mind and thoughts will gently carry me back to very clear images of my past. These vivid memories are a touch tone towards greater understanding and healing of past experiences that I have had. In a blink of an eye, it doesn’t seem real all the time that has gone by since my father’s passing and my grandmother and Uncle’s physical deterioration with Parkinson’s disease.

These three important people in my immediate circle, where products of another era. It was difficult for them to express how they felt and what they desired. But, they were all souses of life giving lessons to me whether I agreed with them or not. They were an instrument towards my understanding the generations of dysfunction and lack of hands on affection in my family, and the wisdom of a young child who saw beyond the whelm, and wanted to move beyond, and towards the light of a better way of living, interacting with others, and being harmonic within the world around me.

All of these people were viewing someone very close to them, dealing with a disability, in a time that was thought to make a normal life impossible. I was from the very beginning, determined to live as though I didn’t have the limitations of my body, or, the “crippling attitudes” of the larger society to deal with. It would never have seemed possible for me to go out into this world and thrive with the attitudes and beliefs I was brought up with. Because, most of my family; especially my mother, was caught up in the daily business of dealing with a disable child and everything that came along with it. While my father came from even an earlier generation than my mother, and he had lost his mother, and was raised by a grandmother, so his focus was on earning a living. That left little time for anything else.

I had to figure out a lot for myself because my father passed away when I was only fourteen. This was just one experience in a period of several years that I lost loved ones. This forced me to be very self reliant, confident, and interdependent. So, it was all put upon my mother to raise my older sister and myself. Although, my dear Mama Katie didn’t quite know how much I could handle, or, how to totally express herself to me or say what was on her mind; she truly understood that I needed a lot more to become the person I was meant to be.

It is hard to remember what a radical idea this was in a time of separation for our community very similar to the segregated south. My mother had to remember the balance I needed, so that I could thrive, grow and develop my inner and outer self. My mother needed to understand two great truths. First, that there needed to be time to relax, regroup, and rest. And secondly, this was even harder, I knew there were thing I needed to accomplish which she wanted to protect me from.

The first time my mother ever had the courage, the strength, and the ability to acknowledge her own error in thinking there were limits to what I could do, was the day I earned my college degree. Who would have thought, that a dysfunction so deeply rooted, could have melted 35 years of pain, hurt, and lose. I was able to use my own positivity to help heal my own wounds, as well as try to restore the physical strength of loved ones in agony. It takes a really strong person to not fall into the trap of isolation and self pity.

All of us reading this magazine had channeled this kind of strength and will power to lead a life and beyond that which experts tried to limit us too. I never fully recognized my inner strengths. But each and every hurdle, blockade and barrier I came across, which called me to full attention, I knew I had to face. I knew I had to deal with it, and I knew I could not run. I had to take the bull by its horn, and all that came with it.

I also knew that I could neither avoid, or refrain, nor deny. My strengths came out of experiences that I just mentioned. This would help me to help others when they needed me the most. When my uncle struggled with Parkinson’s, I was able to give him my positive ways of thinking to deal with his disease and the pain it inflected upon him for well over 10 years. Throughout my life, achievements have come out of my own struggle and the inner resources I have used to maintain a strong mind, body and spirit.

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Handle Institute Event

The HANDLE Institute provides an effective, non-drug alternative for identifying and treating most neurodevelopmental disorders across the lifespan including Autism, ADD, ADHD, Dyslexia and Tourette's Syndrome. HANDLE incorporates research and techniques from many disciplines. It includes principles and perspectives from medicine, rehabilitation, psychology, education and nutrition. It is founded on an interactive, developmental model of human functioning. The HANDLE Institute International, LLC offers clinical services, community information, and professional training programs



They are holding an event on the 14th February at Pilgrim Hall in Lewes



The event are as follows:




  • 1:15pm – 3:30pm
    Judith Bluestone
    "Get Inside Your Head: Neurodevelopment and the Brain"
    Conference Hall

  • 3:30pm – 4:15pm
    Book signing/social time/complementary providers
    All rooms

  • 4:15pm -6:15pm
    Ros Blackburn Keynote Speaker
    “Logically Illogical”
    Conference Hall

  • 6:15pm -7:00pm
    social time/complementary providers
    All rooms

    More about the events
    3:30pm – 4:15pm & 6:15pm – 7:00pm

    l Tea, coffee, snacks (feel free to bring your own as well)
    (note these will be served only from 3:30pm – 4:15pm)

    l Talking with the presenters

    l Sale of HANDLE books (signed by Judith)

    l Guidance in performing HANDLE activities taught during Judith Bluestone's lecture.

    l Mirror writing: a challenging activity to give insight into those with neurodevelopmental differences

    l Complementary provider tables
    These will present approaches, supplements, professions, facilities, books, materials, (we are still looking for people interested in having a table or sending us their literature to display)

    l Networking with HANDLE Affiliates, families, providers


    Need more information? Please contact Cathy Stingley : handleofhomer@yahoo.com

    (+44) 07971 044 690 (after 10 February)

    To secure a table please contact Chris Knight at: 01539 732280 chris@echobarn.co.uk (limited number of spaces available)
    http://www.handle.org/

Here is a map of how to get to the event


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