28 July 2009

My Daughter and Cerebral Palsy

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

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

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

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

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

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

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

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

Wii workout routines

video

Wii makes therapy more fun

by BARBARA TRAININ BLANK For The Patriot-News
Sunday July 26, 2009, 12:00 AM

Vince Cassaro
Lori Rice of HealthSouth helps Army Maj. Neal Stasny, 43, of Lebanon, work out with a Wii at the rehabilitation center in Wormleysburg. Stasny, who is the deputy chief of staff of information management at Fort Indiantown Gap, is recovering from a stroke. Miriam Dreibelbis had suffered from rheumatoid arthritis for many years. Knee surgery exacerbated the pain in her back, and the West Shore resident ended up in a wheelchair.

Seeking help at HealthSouth Hospitals and Outpatient Centers of Mechanicsburg, Dreibelbis found partial relief in "child's play."

HealthSouth is one of a growing number of outpatient and inpatient facilities that are incorporating Wiihabilitation into their physical therapy and rehabilitation regiments.

Wii (pronounced "wee") is an interactive Nintendo computer game that requires participants to move. A wireless remote connects the player to an on-screen digital icon, which mimics his or her movement in various sports and exercises.

Traditional games available on the Wii Sport software include bowling, tennis and golf. Another game attachment is the balance pad that goes with the Wii Fit software. Players stand on this pad to accomplish such things as walking a tightrope.

"Wii is part of a coordinated approach of physical, occupational and speech therapy at our outpatient facilities," says Laureen Martinelli, site coordinator for the HealthSouth center in Wormleysburg. "It has therapeutic benefits beyond 'straight' exercise. When patients come for outpatient therapy, they've already been through maybe months of conventional therapy. We need different tools to engage the brain, to use new muscles. The graphics of Wii are amazing."

The individuals who come for outpatient rehabilitation and physical therapy at the site include amputees and patients with brain injuries, strokes, Parkinson's disease and spinal cord injuries.

The Lebanon VA Medical Center has had Wii software for two years.

"Initially we introduced it to the long-term care, nursing units," says Jennifer Coy, supervisor of rehabilitation therapies at the VA. "Then we bought it for the rest of the units, including the physical therapy and acute behavioral health units."

According to Coy, Wii "has gone over very well" and brings a lot of benefits, especially for long-term care patients. "It's given them a sense of camaraderie and satisfies their need for competition," she says. "Many of the patients are games- and sports-oriented, especially as our demographic has gotten younger. Wii uses something current that's known to them."

Among the other benefits are that Wii can improve perception, balance and range of motion, the latter especially for physical therapy patients. It also enhances attention span.

One of the other advantages the VA has discovered, says Coy, is that Wii helps fight depression, even if the patient comes just to watch rather than actually participate.

"Wii Sport improves hand-eye coordination and gives the patient a little cardio workout," Martinelli says. "Wii Fit will indicate your body mass index."

For Dreibelbis, Wii was not only effective but "fun."

"It's a nice thing to do," she says. "Wii helps alleviate the tedium of physical therapy exercises and gives patients a sense of progress. Wii worked on my balance, which has always been a problem for me."

Dreibelbis also praised the psychological impact. "I realized I had more capabilities than I thought. It makes you forget about your inabilities," she says.

Like the VA, HealthSouth has found socialization an important part of Wii's appeal and effectiveness.

"It's true Wii means people watching a TV screen, but at least they're moving, and it's interactive," Martinelli says. "It's another tool to add to the therapists' bag of tricks."

20 July 2009

Challenging popular myths about autism

By Brattleboro

Last spring, my family and I moved from our 22-acre farm in western Massachusetts to the center of Brattleboro. It was the beginning of a new life together.

Six months later, at the age of 50, I was diagnosed with Asperger’s Syndrome, a high-functioning form of autism. Far from being a moment of heartbreak, my diagnosis was a cause for celebration. For the first time, my life made sense.

I had always felt very different from other people. I had always had a sense of apartness, of otherness, for which I could find no explanation.

The subject of autism had always fascinated me, but the idea that I might be autistic seemed absurd. I’d gone to college, made friends, and worked full-time. I was married and raising a family. How could I be autistic? After all, autistic people were locked into their own, strange worlds, unable to communicate or function in society.

Or so I thought.

I’ve come a long way since then. In the process of understanding myself as an autistic woman, I’ve had to discard all of the myths I’ve ever heard on the subject. These myths include the following.

* * *

Myth #1: All autistic people are nonverbal and low functioning.

Autism is a spectrum condition. In the U.S., one person in every 150 is autistic, and more than half of all autistic people have Asperger’s Syndrome. In addition, many people on the spectrum find themselves between the high-functioning and low-functioning extremes. In fact, some who begin at the more severely affected end of the spectrum can become higher functioning as they grow and learn.

* * *

Myth #2: Autism is a mental illness.

Autism is not a psychological disorder. It is a neurological condition in which the brain and nervous system are highly sensitive to sensory stimuli.

When the average person takes in sensory information from the environment, he or she intuitively filters it, prioritizes it, and responds in a purposeful way. For autistic people, sensory processing works very differently. The information comes in full force, without a great deal of filtering.

For example, I have almost no ability to filter auditory information. Anywhere I go, I hear a cacophony of sounds and voices, all at the same high volume. It is difficult for me to have a conversation with a lot of sound in the background, because for me, there is very little background. Any loud, crowded, unstructured situation causes me nearly immediate sensory overload.

I also experience the visual world very intensely. I am constantly scanning my environment, looking at numerous details, and attempting to order them into some sort of pattern. Because the visual world constantly changes, my ordering process never stops. It’s only recently that I’ve realized that most people do not experience the visual world with the same intensity that I do.

* * *

Myth #3: Autistic people lack empathy.

Far from lacking empathy, autistic people often have an excess of empathy. However, because of our sensory sensitivities, we may not always be able to show it.

As a child, I was very sensitive and vicariously experienced the suffering of others. For example, in Hebrew school, we watched Nazi footage of what had happened in the concentration camps during the Holocaust. I saw films in which people were lined up at the edge of a ditch and shot. The empathy I felt for the people was immediate. I felt myself experiencing what they were experiencing, as though it were happening to me at that very moment.

For many years since then, I’ve been aware that when I walk into a room full of people, I enter into the emotional experience of everyone present. It’s as though all the emotions come right through me. It all comes in much faster than I can process it, but I feel its impact. I become very disoriented, so much so that I have difficulty feeling or thinking at all.

My husband can usually tell when I’m having this experience. He’ll say, “You’re gone, aren’t you?” to which I can only nod an emphatic “Yes.”

* * *

Myth #4: Autistic people are antisocial.

Autistic people often have difficulties in communication because we are unable to intuitively read nonverbal cues, such as facial expressions and body language.

I’ve recently learned that nonverbal cues make up about 90 percent of any conversation. Until my diagnosis, I had no idea that nonverbal language even existed. When conversing, I just hear the words. That’s all. And because I just hear the words, I have to spend more time listening, translating, thinking, and responding than a neuro-typical person.

My response times are therefore delayed. People sometimes interpret my delayed response as a lack of interest. Under most circumstances, they are mistaken.

I don’t think it’s possible for me to fully express what a longing I have to spend time with other people. However, a 10-minute conversation with one person can feel like a lot of work. A conversation with more than one person is nearly impossible. And when you add my sensory and emotional sensitivities to the mix, you get a person who requires a great deal of solitude.

* * *

Myth #5: Autistic people don’t make eye contact because they don’t care about what people have to say.

I find eye contact very difficult, but it has nothing to do with whether I’m interested in what someone is telling me. In fact, if I’m interested, I usually have to look away from the person in order to think clearly.

Over the years, in an attempt to mask my difficulties, I have developed a number of cloaking devices, including the ability to make and maintain eye contact. However, the skill does not come naturally.

Except for my husband and my daughter, I shy away from eye contact with most people, rather in the same way that I shy away from looking directly into the sun. When I look into a person’s eyes, I have such a profound experience of the person that it’s overwhelming.

* * *

Myth #6: Autistic people can’t have families of their own.

Many autistic people are married and raising children. Both my husband and my daughter are neuro-typical, and I adore them.

* * *

Myth #7: Autistic people are puzzles with pieces missing.

The use of the “missing puzzle pieces” metaphor to describe autism is a source of great pain for me.

Before my diagnosis, I used to feel that I had pieces missing. Once I discovered that I had Asperger’s Syndrome, all of the pieces of my life started coming together to form a coherent, recognizable picture. For the first time in my life, I felt whole.

* * *

Myth #8: Autistic people have low intelligence.

Autistic people have different levels of intelligence, just as neuro-typical people do. The test used for measuring intelligence makes a profound difference in the outcome of the assessment.

In a 2007 study, autistic children and neuro-typical children took two IQ tests: the wisc test (which relies on verbal questions and responses) and the Raven’s Progressive Matrices test (which measures the ability to do high-level abstraction and complex reasoning).

Not a single autistic child scored in the high-intelligence range of the wisc; in fact, one-third scored in the low-intelligence range. However, one-third of the autistic children scored in the high-intelligence range on the Raven’s. Autistic and neuro-typical adults were tested as well, with the same results.

* * *

Myth #9: Autistic people do not enjoy life.

For some autistic people, this statement is true, just as it’s true for any other group of people. However, many of us find great joy in our loved ones, and we can focus like a laser beam on our special interests for hours on end. My family, my friends, my art, my music, my writing, and my community work are constant sources of joy and satisfaction.

* * *

Myth #10: Autism is a disease in need of a cure.

This statement is the focus of passionate debate.

Like many others, I do not consider autism a disease. As researchers at the Swiss Brain-Mind Institute wrote in a 2007 article, “The autistic person is an individual with remarkable and far above average capabilities due to greatly enhanced perception, attention, and memory. In fact, it is this hyper-functionality which could render the individual debilitated.”

At present, there is no cure for autism. I understand why some people on the spectrum might want a cure. Being autistic, even at a high-functioning level, is very difficult. For people on the severe end of the spectrum, the condition can be truly disabling.

Personally, I do not want to be cured. Autism makes me who I am, and it has given me many gifts. I am sensitive, empathetic, and artistic. I see great beauty in the world, and I feel its injustices very deeply. I am very direct in my speech, and for that reason, people intuitively trust me.

I would not want to be different. I am proud of who I am. It has taken me 50 years to discover the truth about my life. In the time remaining to me, I plan to mine that truth for all its worth.

Source: http://www.commonsnews.org/test3/story.php?articleno=694

19 July 2009

It's festival time again

THERE’S plenty of festival fun lined up for the Tees Valley this summer. Take a look: Stockton International Riverside Festival July 30-August 2 EXPECT the unexpected if you’re heading to Stockton this summer. Now in its 22nd year, Stockton International Riverside Festival will again welcome artists and street theatre companies from across the globe. At the heart of the festival will be NoFit State Circus who will make their home in Trinity Gardens and invite you to join them in a joyful exploration and celebration of the secret life of public parks. Their show Parklife will premiere at SIRF and, in the run up to the performances, there will be a series of workshops for local creative groups who will be able to be part of Britain’s leading contemporary circus. Other highlights includes Balletboyz II - The Next Generation who will perform their outdoor dance piece


The Laws Of Motion. Deabru Beltzsak bring their urban dance piece Bande Deplacee to Stockton - watch out as peculiar characters, similar to the ancient Samurai, hit the streets blending dance with fire and rhythms. Also check out Little Box Of Horrors - a playful and artfully choreographed peep show and Digital Funfair where audiences can release their tension with a virtual coconut shy. Another new show at SIRF is Until Now. Developed by acrobatics group Mimbre, it combines world class acrobatics with physical theatre and dance, using a unique physical language to tell stories and create imagery. This year’s Community Carnival will take centre stage on Saturday, August 1, as around 1,000 people make their way along Stockton High Street. The theme this year is Small Wonders, Big World. The World Famous will bring the curtain down on the Festival with a breathtaking finale at Trinity Gardens on Sunday, August 2. The show is called Trinity, which takes inspiration from their surroundings and celebrates the building and its history.
Ahead of the finale, World Famous will create an installation at Trinity Green using music, light, fire and fireworks to animate Trinity Church.

For more details log on to www.sirf.co.uk Stockton Riverside Fringe Festival July 30-August 2 Get ready to rock down by the Riverside at this year’s Fringe. This year’s free festival will combine great live music with comedy. Brit-poppers The Charlatans will headline the main stage on Friday, July 31. Supergrass - who had been booked to headline the event last year but had to pull out due to commitments in the USA - will close the main stage on Saturday, August 1. And Auchtermuchty’s finest folk-rockers and foot-tappers The Proclaimers will close The Fringe on Sunday, August 2. The Fringe kicks off on Thursday, July 30, in The Georgian Theatre, with the welcome return of ex-Love & Money front man James Grant - the main stage opens at noon the next day. The Fringe will also feature a second stage - Loosely Acoustic. In the Comedy Tent the laughter line-up includes internationally acclaimed Canadian stand-up Craig Campbell who will light up the stage with natural eccentricity and an ability to find humour in the mundane on Friday evening. Razor-sharp Geordie Jason Cook, fresh from a tour of New Zealand, presents his mix of audience interaction, storytelling and improvisation. On Saturday’s bill, Lucy Porter’s chirpy exterior conceals a sharp mind and a wicked streak. Tasmanian devil Phil Nichol with guitar and funny songs follows, with ex-circus juggler, unicyclist, knife thrower, fire-eater, and magician Martin


Bigpig sure to close the night with a bang. Sunday’s star Dan Nightingale began his comedy career while living in Newcastle and working at a comedy club as a sound man. Six months on and Dan has enjoyed a meteoric rise, performing sell out shows across the country as well as supporting the likes of Ross Noble and Daniel Kitson on tours. Also back again after last year’s side splitting performance is Anvil Springstien with Matt Reed compere for the three days. All Fringe events are free, including the main music stage and comedy tent. ● More details at www.fringefestival.co.uk Billingham International Folklore Festival August 1-8 Billingham will play host to dancers from around the globe next month as the town’s International Foklore Festival celebrates its 45th anniversary. Dancers from nine countries - including Mongolia, Russia, Peru and the Cook Islands - will be arriving for the event, plus there will be performances from home grown talent. The Billingham Festival Arena in the town centre will be the focus of much of the entertainment. But with the Forum Theatre currently closed while a £15m redevelopment of the Forum complex takes place, other events will be held at Middlesbrough Theatre and Arc in Stockton. ● For more details log on to www.billinghamfestival.co.uk

Send in the robots - for virtual rehab

By 2020, occupational, physical, psychological and behavioral rehabilitation will be carried out by robots in our own homes, according to Professor Grigore Burdea speaking at the Virtual Rehabilitation 2009 International Conference in Israel this month.

And they won't just stop there, Burdea told delegates from Israel and around the world. The robots will also do the cooking, cleaning, dressing and other household chores.

"The future is in low-cost, patient-based devices that will enable the patient to receive continuously tailored therapy from home," he said.

Burdea, a pioneer in the field of virtual rehabilitation and director of the Rutgers Tele-Rehabilitation Institute in New Jersey in the US, was one of many speakers at the conference hosted by the University of Haifa.

Multiple therapies, one robot

He predicts that in the near future we will see various aspects of therapy coming together. Instead of a slew of therapists treating each patient, there will one therapist regulating the inclusive virtual application of therapies tailored to each specific patient.

He explains that the technologies that will enable this scenario are likely to come in the form of robotics - a robot that can do everything in the home of a patient, from cooking and cleaning, to providing therapy specifically suited to the patient's individual and changing rehabilitation needs.

"A patient might often feel more at ease talking to a robot, and in the comfort of the home and not in a hospital or clinic," said Burdea.

"Cloud rehabilitation," a term coined by Burdea, will also play a major role in future interactive virtual rehabilitation enhancement.

We'll still need human therapists

Use of cloud computing technology will facilitate real-time data processing, as it enables us to record on remote servers the rehabilitation processes taking place in a patient's home.

That makes the information accessible to remote therapists who can then provide analysis and feedback. He emphasizes, however, that technology is meant to augment, not to replace, therapists.

The future technology will avoid the risks inherent in the use of today's virtual reality games for rehabilitation, Burdea explains. The Wii and Xbox, for example, have already been adopted by therapists but are not suitable for unassisted patient use because they may cause elevated blood pressure or loss of balance.

However, the game-based concept will certainly remain, because it provides motivation and makes it fun to achieve goals.

15 July 2009

Scoliosis study aims to determine bracing's effectiveness

By Beth Miller
July 14, 2009 -- Washington University School of Medicine in St. Louis is participating in a national trial to determine whether back braces for adolescents with scoliosis, an abnormal curvature of the spine, are effective in preventing the condition from progressing and, if so, which patients most benefit.
The medical center is one of 25 sites across the United States and Canada participating in the trial, called the Bracing in Adolescent Idiopathic Scoliosis Trial (BrAIST), one of the first clinical trials in pediatric orthopedics funded by the National Institutes of Health.
Adolescent Idiopathic Scoliosis (AIS) occurs with no known cause in children from 10-18 years old. It is the most common type of scoliosis and is more commonly seen in girls. Severe scoliosis can cause back pain and difficulty breathing.
"Even though bracing to slow down curve progression in patients with AIS has been the standard of care in the United States for about 30 years, the treatment's effectiveness remains unclear," said Matthew B. Dobbs, M.D., a Washington University pediatric orthopedic surgeon at St. Louis Children's Hospital and a study collaborator. "There are patients who use bracing yet their curve progression continues, while other patients with AIS who don't use bracing do not experience any curve progression."
Participants are randomly assigned to either wear a brace at least 18 hours a day or to have regularly scheduled follow-up visits and X-rays to track curve progression. Spinal curves that progress to 50 degrees indicate a high risk for continued curve progression throughout adulthood. In these cases, spinal fusion surgery is usually recommended to correct the curve.
"The occurrence of AIS is about one in 1,000, and its prevalence is 10 to 1 in girls. Only about 10 percent of these patients require surgical intervention," Dobbs said. Patients between 10-15 years old with a curve between 20 degrees and 40 degrees have traditionally been treated with bracing until they reach skeletal maturity, which can be up to six years if the girl is 10 or 11 years old, Dobbs said.
"That means patients are wearing braces at a time in their life when they don't want to be different from their peers," Dobbs said. "It can be quite a traumatic decision, which is one reason why this study is so important. In addition, the bracing is expensive, and the orthosis needs to be refitted or replaced as patients grow."
Although the study findings could be at different ends of a spectrum — either bracing works and needs to be used for all patients with AIS, or bracing doesn't work at all and should be abandoned as a treatment —Dobbs said he expects an outcome somewhere in the middle.
"I anticipate we will discover that bracing works for certain types of curves, which means we can become much more selective in prescribing it as a treatment," he said. "Whatever the findings, however, this will be a major step forward in our understanding of how to treat this relatively common disorder."
To be eligible to enroll in the study, patients must be between 10 and 15 years old (either male or female). Inclusion criteria include diagnosis of AIS; pre-menarchal or post-menarchal by no more than one year; physical and mental ability to adhere to bracing treatment; and documented insurance coverage and/or personal willingness to pay for treatment.
Patients who have a diagnosis of other musculoskeletal or developmental illness that might be responsible for the spinal curvature or a history of previous surgical or orthotic treatment for AIS are not eligible for the study.
Once accepted into the study, patients will be followed at Washington University School of Medicine and St. Louis Children's Hospital. Two visits per year are required for X-rays and evaluation.
For additional information regarding the study and inclusion criteria, contact the research coordinator at (314) 454-4113.

12 July 2009

Hyperbaric therapy shows promise for autism treatment

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



by Elizabeth Diffin

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




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












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

Beyond Boundaries

A chance phonecall from Julia La Garde, Business Development Manager at Physiofunction, lead to Physiotherapy and FES being a headline feature at Beyond Boundaries 2009.


Held at the site of the Farnborough Airshow over the weekend of 4th and 5th July, Beyond Boundaries attracted over 4000 visitors including many young disabled people and their families seeing how they could extend their Boundaries.

There were opportunities to have a scuba dive,rock climb, and get round various adapted army assault courses. Wheelchair users were treated to the Pimp My Wheelchair attraction – a fun take on the MTV show, Pimp My Ride.

The show feature though was Physiotherapy and Functional Electrical Stimulation (FES) for Foot-drop.

Jon Graham, Clinical Director at Physiofunction. “We have seen so many of our clients extend their boundaries with FES – hill-walking, golf, tennis and taking up Triathlon following strokes, head injuries and incomplete spinal injuries. Mark Brewster, event organiser, immediately saw the potential for FES as a show feature and created the PHYSIOZONE”


Extending Boundaries at BBLive 09

A chance phonecall from Julia La Garde, Business Development Manager at Physiofunction, lead to Physiotherapy and FES being a headline feature at Beyond Boundaries 2009.

Held at the site of the Farnborough Airshow over the weekend of 4th and 5th July, Beyond Boundaries attracted over 4000 visitors including many young disabled people and their families seeing how they could extend their Boundaries.

There were opportunities to have a scuba dive,rock climb, and get round various adapted army assault courses. Wheelchair users were treated to the Pimp My Wheelchair attraction – a fun take on the MTV show, Pimp My Ride.

The show feature though was Physiotherapy and Functional Electrical Stimulation (FES) for Foot-drop.
Jon Graham, Clinical Director at Physiofunction. “We have seen so many of our clients extend their boundaries with FES – hill-walking, golf, tennis and taking up Triathlon following strokes, head injuries and incomplete spinal injuries. Mark Brewster, event organiser, immediately saw the potential for FES as a show feature and created the PHYSIOZONE”




Jon Graham showing Paddy Rozier who has bilateral footodrop from MS how much easier walking can be with FES



The PHYSIOZONE had three booths where visitors could have free assessments using FES systems from Odstock Medical (OML) and Bioness. It was OML’s original team at Salisbury District Hospital that produced the first practical solution for treating drop foot.
This January saw the NICE guidelines published which declared FES as a safe and effective treatment for people with drop foot caused by damage to the brain or spinal cord. However, a frustration with current FES systems is the wiring from the trigger switch to the stimulator and from the FES unit to the electrode pads that stimulate the muscles to lift the foot at the ankle. Users also struggle with placing the electrode pads on the correct position on their leg to obtain a functional foot lift.
Charlotte Standing struggled through heat and M25 traffic jams to try out the wireless FES system from Bioness.






Jon Graham, Clinical Director and Charlie King of Physiofunction South Yorkshire assessing a patient for wireless FES





In a week that saw the end of Britain’s Tennis dream with the defeat of Andy Murray in the semi- finals, Physiofunction worked with Ian Payne, National Youth Wheelchair Champion

GB Wheelchair Tennis Champ, Ian Payne extends his boundaries with the SaeboReach
“The PHYSIOZONE also gave us the opportunity to give free demonstrations of the other innovative technology that is available to assist with recovery” said Jon Graham, “Ian has cerebral palsy and movement restriction in his left arm is hampering his serve and his courtside wheelchair mobility. The Saeboreach by engaging the user in functional rehab programme using a dynamic upper limb splint will help them control spasticity and regain lost movement patterns.
Originally started in 1999, Physiofunction has become the UK‘s leading provider of private outpatient and community rehabilitation with a current coverage from North Yorkshire to its newly opened clinic at the Oxford Centre of Enablement.

“We use specialised Neurological Physiotherapy techniques, including Bobath and Charlie King’s NET system, and Innovative technology to maximise our clients independence,” Jon Graham , founder and clinical director.

“We obtained a trademark for providing Physiotherapy services, and plan to develop a Nationwide Neurological Physiotherapy service through by expanding the numbers of our existing branches and also through our proven franchise system. Our pilot franchise in North Yorkshire demonstrated the potential of franchising for those starting out in Private Practice and those wanting to extend their existing practice to new levels.”

Charlie King, a private practitioner of 12 years standing says:’ I could immediately see the benefit of joining a franchised business. As expert clinicians we have the clinical skill training to helping our clients achieve their rehab goals. However, we don’t have the time or often the opportunities to develop business skills including sales, marketing, PR and Recruitment, let alone payroll and VAT. I joined the franchise in April 2009 as Physiofunction South Yorkshire and have already seen my business develop. If I can grow my business, I can help more people and also help develop the skills of my employees by developing my role as a clinical consultant whilst the franchisor takes the stress and distraction of running my business away from me’
Foot drop and FES:
Foot drop is the inability to lift the foot at the ankle. It can be caused by damage to the brain and spinal cord through stroke, head injury and spinal injury. FES uses electrical stimulation to activate the muscles that lift the foot via either surface or more rarely implanted electrodes. A discrete switch usually worn under the users heel triggers the stimulator at the appropriate time to assist the user clear the ground as they swing their affected leg forward.

FES cannot usually help where drop foot is caused by damage to the peripheral nerve eg: diabetic neuropathy.
The 2 days spent ‘Spreading the word’ was one of the busiest features of the event.We have always offered to come and do similar days at any support groups – only a few of you have booked us
the offer is still available for free – let’s together spread the word and at least get people an assessment and trial so they know as soon as possible if it will work for them!!
Julia
PhysioFunction

Deep Brain Stimulation Promising Treatment for Cerebral Palsy

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

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

05 July 2009

When a rolling walker is a transport wheelchair

July 2, 4:41 PM · Kathryn Arbour - Denver Mobility Products Examiner



Physical therapists and durable medical equipment (DME) manufacturers and dealers have spent a lifetime telling people NEVER to use a rolling 4-wheeled walker as a wheelchair. The traditional A-frame design of these ubiquitous and mighty machine

s is not designed to be pushed or rolled in any direction with someone perched on the seat. The advantage of a rolling 4-wheeled walker with brakes and a seat is that it offers a resting option for the user who may tire easily and often. Many falling injuries occur as elders try to scoot themselves while seated on these walkers.

However, all that great advice is about to change with the arrival of combination rolling walkers/transport wheelchairs. Long on the radar screen of DME manufacturers from a design perspective, the actual translation of the design into manageable pieces of mobility equipment has taken longer than most would have guessed. Some of the earliest models as recently as five or six years ago required so much manipulation for the transformation that some claimed a degree in engineering was necessary. And, weight is always a problem with DME products whose users already have physical challenges of one sort or another.
Things changed last year as a number of manufacturers cracked the code and produced some of the first viable combination units. This review examines versions created by three different manufacturers, American Bantex, Drive Medical and Medline.
American Bantex calls their unit simply a combo walker/transport chair. It sports the A-frame typical of rolling 4-wheeled walkers. When converting to a transport wheelchair, the back rest pops out of one side and into the other. Two footrests stay folded against the side of the walker ready to pull down into position once the individual is seated. The look is attractive and unobtrusive and the actions needed are minimal to create the transformation. The one difficulty occurs with steering. Rear swivel wheels that work well as a walker create some frustrations as they become front wheels of a transport chair. The individual pushing the unit fights against these unwieldy wheels. As one of the first to market, however, at a very reasonable price point, the unit sells well and users accommodate this quirky feature.
Drive Medical also released their version, dubbed Duet, in 2008 with a few big improvements over the American Bantex. All four wheels are the same. By using larger wheels, the unit moves more smoothly both as a walker and a transporter. This manufacturer also developed a footrest that swings out of the A-frame, keeping it tucked out of the way when the unit is used as a 4-wheeled walker. The backrest is sturdier and layered with extra foam. This unit also has two handles that fold out to use as armrests when in the transporter mode. These two features alone provide more comfort to the individual. The unit weighs about the same as the American Bantex version and looks quite similar, although the folding mechanism is tight and offers challenges to typical users.
Medline, a family owned U.S. business and one of the largest provider of medical supplies and related products, is introducing its version, The Translator, this summer in a few U.S. markets. The earliest version offers a number of advantages over its competitors. First and foremost, it is considerably lighter in weight with a nylon seat and backrest and a lightweight aluminum frame. The backrest simply flips over with the simplest of movements. Medline uses the footrest design popularized by American Bantex. The unit is wider, which is both a plus and a minus. A wider seat is more appealing to a large number of users. A wider frame, however, makes it difficult to maneuver easily through stores and the insides of many older homes. Of the three models this one is by far the easiest to transform. However, of the three it is also the most difficult to fold. The seat is firmly anchored in seat guides that are exceptionally tight. While this ensures a solid sitting surface, it makes it virtually impossible to fold without assistance. Once folded, though, the Medline Translator is the lightest weight model on the market and can fit easily behind the seat of a car. No heavy lifting required.
As one of the newer DME products to hit the marketplace, the combined rolling walker and transport wheelchair is welcomed by individuals and caregivers alike. The product will not eliminate the widespread popularity of both the rolling 4-wheeled walker and the transport wheelchair, but offers a satisfying solution for families who are looking for a single solution. There is an MSRP price point differential of about $50 among all three models, although dealer pricing varies widely, especially on the internet.
For more info:
See the Drive Medical Duet
Read more about walkers
A local retailer changes one woman's life with a transport chair

Author
Kathryn Arbour is an Examiner from Denver. You can see Kathryn's articles at: "http://www.examiner.com/x-10736-Denver-Mobility-Products-Examiner

Finding a lasting love Over looking the difference

I'm amazed something so simple,like finding a female friend, who is as black and white as I am ,who accepts a person for who he is not a comparison to Tom Cruise or their last boy friend who was the life of the party and the "Bad" boy appeal that women (many ) seem to go for ,then wonder why they cheat on them or control them.
Being a Guy with a few obstacles due to being born with Cerebral Palsy ,I know I'm no Hunk!Yet I have managed on my own with little or no assistance from GOV. I have always worked and been a sole bread winner . working to provide all I can while significant others did their own thing mostly took advantage. But people who see those of is (differently abled) doing everything to be a part of "normal" society.See strong capability,what they seem not to understand is the tremendousamount of energy we exhaust physical,mentally and emotionally to minimize our challengesthus after a while we begin to crash.When the Once strong and cabapble is now showing some need for spousal help .which should be their anyway yet most women compare to the average mans ability . not to the Challenged persons" ability of ease.
For those people who are empathetic to the difficulties in relattionships of the differently abled I apreciate all you do .I am one who never gives up hope .I Know someday I strong ,attractive (inside ,outside) woman ,a queen shall appear sometimes I just need a push in the right direction and confidence to not worry about what "if"

03 July 2009

Disability Advisory Group part three

Theatre Group
Come along to a Theatre group for adults with disabilities on a Tuesday from 4.30 till 6pm at Rievaulx resource centre Rievaulx Avenue, Billingham. Cost-£1.50
For more information please call 07728382442 or email amy.Stubbs@stockton.gov.uk

Childcare Consultation

Stockton-on-Tees Borough Council has a duty to ensure there is sufficient good quality childcare across the Borough to meet the needs of parents and carers, and their children, and which supports the wider social and economic development of the town.
To meet this duty The Children and Young People’s Strategy Team are carrying out consultation with parents/carers of children with disabilities and/or special needs to determine if there are any gaps in childcare provision and to identify any barriers to take-up of formal childcare.
Questionnaires have been handed out to parents for completion at various events/venues over the last couple of months. Once all questionnaires have been received the findings will be analysed and the results fed back to parents via various channels.

I would like to thank all those parents/carers who have already completed and returned questionnaires.

Childcare Business Support Manager
Phone: 01642 527208

Independent Living

The Council’s Independent Living team have updated their website to include details of different services and groups available as well as a News and Events page. To access this choose I for Independent Living from the A-Z of services. Or for more information contact the Independent Living team on 01642 527056 or email: Independent.Living@stockton.gov.uk

Disability Advisory Group part two

Information on ‘Fun Sporting Activities for All’

Multi Sport Club-
Date: Tuesday Evenings
Time: 6pm—8pm
Venue: Blakeston School, Junction Road, Stockton on Tees, TS19 9LT
Cost: £2 per session

The club is open to all ages for people with a disability who are wheelchair users.


Football Coaching Sessions 16+
Date: Thursday Evenings
Time: 7pm—8pm
Venue: Northfield School, Thames Road, Billingham, TS22 5EG
Cost: £2 per session

The football sessions are open to adults with a disability or special educational need

For further information on either football coaching or multi-sports club please contact: 01642 528510

Recycling, making it as easy as can be

Do you have a disability that makes recycling in your home difficult?

If the answer is yes, then hopefully we can help. Using the kerbside recycling facilities couldn’t be easier, and we can offer you help if you:

· Struggle to put your box or bags out for collection

· Can’t manage with the current size of the boxes and bags

· Find it difficult to read the literature in the current format offered

· Have difficulty putting your wheelie bin out at the kerbside

Just contact us on the details below for assistance:

Phone: 01642 395919
Visit: Environment Centre, 21 West Row, Stockton, TS18 1BT
Email: careforyourarea@stockton.gov.uk
Log on: www.recycleforstockton.co.uk

Disability Advisory Group part one

As you may of read a number of posts ago I had become a memeber of the Disability Advisory Group for Stockton on Tees. I am now able to share with you our latest newsletter. I will post it over a number of entries as it is quite long:

Welcome to the latest edition of the Disability Advisory Group newsletter
Access to Cycle Ways

a brief update was provided on access to cycle ways and the use of tactile paving. Towards the end of summer 2009 a survey of all routes will be completed and over the autumn/winter areas for improvement will be identified. Members of the group were positive about the use of tactile paving to guide them along existing routes.
Cleveland Fire Brigade

Disability Advocates for Cleveland Fire Brigade came along to meet members of the group, they explained to the group about home fire safety visits, where a home visit takes place to develop a plan with each person on how to safely get out of your home in an emergency, free smoke alarms will also be fitted if necessary-call 01429 874063 to arrange a visit.

People who are Deaf or have a hearing impairment can get access to vibrating smoke alarms.

Everyone should check the batteries on their smoke detectors, when the Fire Brigade fit alarms they trigger a re-visit in five years time to check the equipment provided. A member of the group expressed their gratitude for the work that the Fire Brigade has done, in particular to the Winter Warmth scheme which they said saved their life during the particularly cold period at the beginning of this year
For more information or advice please contact the advocate’s team using the details below:

Phone 01429 872311
Minicom 01429 874053
Post Cleveland Fire Brigade Headquarters, Endeavour House Stockton Road, Hartlepool, TS25 1JE
Stockton User Representative Group for Employment (SURGE)-Mental Health Issues
A representative came to talk to the group to challenge the myths and misconceptions that surround mental health issues. Some of the facts include that every year 1 in 6 people are affected by a mental health problem at any one time and the Mental Health Foundation estimates that 70 per cent of recorded suicides are by people experiencing depression, often undiagnosed.

SURGE is an independent user group that aims to raise awareness about mental health issues in the area, promote social inclusion and positively influence how mental health services are delivered within Stockton.

If you are interested in joining SURGE or would like more information, please contact us. Telephone: SURGE Office on (01642) 647744 or the Involvement Worker on (01642) 352914 Post: SURGE, Norton Community Resource Centre, Somerset Road, Norton, Stockton-on-Tees. TS20 2ND

The Mind Maze Volunteering Project

Christine Coulman and Paul Christon came along with representatives from the Mind Maze Volunteering Project to let people know of the opportunities available to volunteer as a mentor or get support as a mentee. It was an inspiring session with people sharing what a tremendous impact their involvement in the project has had, with positive and motivating stories.

Working across the Borough of Stockton and Middlesbrough the project supports people with mental health problems and their carers to enable them to make progress in their lives and achieve independence. We do this through the provision of one to one support and structured group activities.

For more information please use the details below:
Phone: 01642 633525
Email: christine.coulman@middlesbroughmind.org.uk
Address: Stockton Business Centre, 70 Brunswick Street, Stockton-on-Tees

Scoring Your Scoliosis

Your child goes in for a school physical and you walk out with an appointment to see a scoliosis expert. It's a situation that's all too common. Many parents are left to wonder whether surgery is in their child's future.
But parents are now getting their answer, thanks a new test.

A scoliosis diagnosis is common in young children and often a brace is used to help correct it. But now a new test can tell you whether it's going to get better or worse.

Medical technology has come a long way. Now saliva in a vile can rate your child's scoliosis.



“The score is designed to tell us whether the patient's curve is going to stay the same or progress as they get older, " Dr. Geoffrey Haft, a scoliosis expert with Sanford Clinic Orthopedics & Sports Medicine, said.

Haft says the DNA test helps to guide a patient's treatment. And 13-year-old Madison Michels is a prime candidate.

Her score is 163, which means her scoliosis is considered moderate to severe. It also means she'll have to wear her brace a while longer.

"I don't really mind it as long as it corrects what my spine is doing,” Madison said.

“The test helped my husband and I find out exactly how serious her scoliosis is and the severity of it and what we need to do,” Madison's mom, Jolene Michels, said.

Looking at an x-ray, you can see how her spine curves without the brace. But when she has it on, her spine is nearly straight. Dr. Haft says the test can hopefully keep his patients from having surgery in the future.

“In the worst case, the curve gets to be over 50 degrees. We have ways of measuring curves and we put a number to it. Curves that are over 50 degrees tend to progress throughout adulthood and we end up doing surgery on those patients and fusing the spine, straightening it out so that it can't progress,” Haft said.

It's a surgery Madison and her family hope her brace will help her avoid.

“It's nice to know that test has said she needs to be wearing this and so we make sure that she does,” Jolene said.

Sanford is one of 42 sites testing the ScoliScore product. It won't become available to the entire orthopedic community until this fall.

02 July 2009

Do we know the power of Yoga?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Writing for This Publication

It hardly seems possible that I have been writing for Audacity Magazine for well over a year, now. Every article I have written has been a new challenge. Every article, I have written, has been as different as the article before. And every article I write comes from a place of understanding, compassion, and a sincere honesty to enlighten the public. I would definitely have to say, however, that they have all been like every other article in this magazine; connected with the one purpose of exploring the daily lives and feelings of the disabled community.
In a big, way, attempts have never been made to move beyond daily living skills, to understand and explore the other aspects of our lives. Thus, these articles, which I have written, have been crafted, created, and revealed to the public so that light may be shed. I have seen articles here, on everything from learning to drive, to romance, travel, and remembering the great leasers of our past. I don’t know other than blogs, of a place, in which the great leaders of our community could gather together and express exactly what was on their minds. This is invaluable, because it reminds all of us that we are not ever alone.
My experience, writing for Audacity Magazine, has not only made me more determined to move forward with my own life, but to experience writing for a prestigious magazine, when at one time, three and a half decades ago, I could not even form a constructive sentence by myself. To be accepted by Natashasa, has not only been a powerful experience for me, but it has reminded me that I was right! I clung to the belief that I could learn, and I did. I clung to the belief that I had a right to an education and I got one. And, I clung to the awareness that I was going to make a mark on this world. And, just like all of you, I have! I have determined, in the depths of myself that, no one was going to define my personhood. No one was going to tell me, or make me believe that I was less than what I was. No one was going to take away the healthy self-esteem and autonomy I fought for. But writing for this magazine has taken me a step further. Each time, in every way, that I write another article, for this magazine; I am reminded of my own progress, and, I am reminded of all the other valuable gifts I have to share with the world.

The birth of a magazine

What does it feel like to give birth to something that no one else has ever conceived of? And what does it feel like to bring to the forefront idea’s that could change disabled men and women’s lives for ever? Well, I’ll tell you. I think it takes a dedicated, in-tune, and highly motivated person to bring ideas to the front- line of society which no one else has had the courage to challenge.
The birth of Audacity Magazine has opened the doors, I’m sure for many. Not just for those writers, like me, who have some kind of physical disability or special needs who audaciously want to make this not only a better place for others, but also wants to bring a cutting-edge approach to those issues at hand, that affect so many of us; which are so easily swept under the carpet. But, also, has brought food for thought for 6 years now to all of its readers and subscribers.
This magazine has brought to its readers a cheeky, daring, and fearless way of approaching the truth from a different perspective and point of view. Its angle has come from the disability community. Its thoughts! Its words! And, all its power! Focusing, directly, on the issues of the day-
I’m sure; the birth of this magazine took to heart all the issues and fragile topics of its disabled population. I’m sure, that when the first issue appeared online; it was a very happy, joyous, momentous, occasion. I’m sure it brought an inward satisfaction to Natasha, the founder of Audacity. To see something materialize, from nothing; and to be shaped, formed, and molded from scratch, that truly, must have been gratifying, indeed. And, to be so focused, so dedicated, and so committed to nurture, and develop, story after story, month after month, year, after year, took much planning, much pride, and much perseverance.
To have the ability to not only write, and to educate, but to shape and influences other people’s thoughts and views is highly commendable. It takes a person with great vision to broaden one’s opinion and scope- it takes an idea, an act, and a concept to bring such a dream to pass. It took a creative energy, to bring about the birth of this magazine. Thus, let’s light Audacity’s birthday cake with 7 brightly lit candles, to light its way for its fruitful year ahead.

The Blues: is it in the Disability Community, Too?

Often, the reality of our disabilities can lead to an increased instance of depression. Our physical scars may have heeled, but the physiological and sociological have not. Ninety-nine people out of one hundred and forty-four; according to a recent study linked their learning disabilities with depression and other depressive disorders. This is the result of a lack of flexibility in the education process. Students are often placed with those with emotional and behavior problems. Teachers are therefore, unable to give the time needed to each individual student because they must serve as baby-sitters to those who do not wish to participate in the learning process.
Yet, within each of us their remains a strong desire to discover “the secret.” This means, that, most people given patience, tolerance, and a relaxed environment can learn and succeed. This success will reinforce the positive aspects of each person’s life. Every achievement from traveling the world wide, to putting on a dinner is note worthy and valuable. The memory of past achievements can sometimes serve as a reminder in the depth of suffering that this current sadness will not last.
Many students can look back and remember that one parent, teacher, or friend who took the time to find it within themselves, to figure out just what that person needed to thrive, survive, and to see the light at the end of the tunnel. Often, just as much as the chemical imbalance, feelings of depression, and low self-esteem, come from a sense that a person is entirely alone. The awareness, that in fact, everyone wants an individual to in fact, succeed, can be very liberating. There is an old saying which demonstrates this idea. “Only if you have been in the deepest pit of sorrow, loss, and despair, can you ever know how magnificent it is to climb to the to of the highest mountain.”

Curvature of the spine: Could your child have scoliosis?

In a person with scoliosis, the spine may curve side-to-side in a "C" or "S" shape. Sometimes the spinal bones (vertebrae) may also twist. © iStockphoto.com

By Laurie Sammeth, Contributing Writer, myOptumHealth

Content provided by
myOptumHealth

Subtle signs of scoliosis, such as an uneven hemline or one hip appearing higher than the other, may first be noticed during a growth spurt in the early teen or preteen years. While these signs can be alarming, scoliosis is usually mild and won't get worse. Only about four children in 1,000 will need any treatment for it. In some cases, bracing is used to stop the progression of a curve. Rarely, surgery is needed to correct it.

Scoliosis is an abnormal curve of the spine. Normally when you look at a person's back, the spine or backbone falls in a straight line from the base of the neck to the tailbone. In a person with scoliosis, the spine may curve side-to-side in a "C" or "S" shape. Sometimes the spinal bones (vertebrae) may also twist.

What causes scoliosis?

Most of the time, doctors don't know what causes scoliosis. In these cases, it is called idiopathic scoliosis. In a few cases, it may be caused by another condition, such as a connective tissue or neuromuscular disorder.

Scoliosis tends to run in families. Idiopathic scoliosis occurs more often and tends to progress more in girls than in boys. Posture, a heavy book bag, or diet and exercise have nothing to do with whether someone will develop scoliosis.

What are the symptoms?

Scoliosis usually causes the spine to curve in an "S" or "C" shape. There may be no symptoms in the early stages of mild scoliosis. Signs of scoliosis include having:

One shoulder higher than the other
An uneven waistline
Ribs that stick out farther on one side of the body
A shoulder blade that sticks out farther on one side of the body
A tendency to lean to one side
Most cases are mild and don't get worse. In other cases, early treatment with a brace may prevent a curve from getting worse.

If scoliosis becomes severe, it may cause back pain or breathing problems. The earlier a child develops it, the more severe the curve can become.

How is it treated?

What treatment your child may need for scoliosis will depend on his age and how much more a child is expected to grow. Treatment also depends on how severe the curve is.

The main treatments for scoliosis include:

Observation. If your child has only a mild form (a spinal curve under 25 degrees), she most likely will not need treatment. But she should see the doctor every four to six months for observation until she stops growing.
Bracing. If your child is still growing and has a spinal curve over 25 to 30 degrees, he may need to wear a brace to prevent the curve from getting worse. There are many different kinds of braces and each must be custom fit for your child.
A brace will not correct the spinal curving but may keep it from getting worse. Your child must wear the brace every day for as long as the doctor recommends. But she can often take it off to exercise and play sports.

Surgery. If your child's scoliosis is severe (a spinal curve over 45 to 50 degrees) or if bracing does not stop its progression, surgery may be suggested. Surgery involves fusing (connecting) two or more vertebrae to straighten the backbone and inserting a permanent implant, such as a metal rod, to help keep it straight.
Having scoliosis can affect your child's self-esteem during the vulnerable teen years. It may be helpful to join a support group of others coping with the same condition.

SOURCES:
US Preventive Services Task Force (USPSTF). Screening for idiopathic scoliosis in adolescents.
Scoliosis Association. Scoliosis facts.
National Institute of Arthritis and Musculoskeletal and Skin Diseases. Scoliosis.
Greiner KA. Adolescent idiopathic scoliosis: radiologic decision-making. American Family Physician. 2002;65:1817-1822.
American Academy of Orthopaedic Surgeons. Scoliosis in children and adolescents.