TheDenverChannel.com


POSTED: 6:21 pm MST November 18, 2009

About 80 percent of Americans will experience low back pain at some point in their lives.

It's the second most common reason people visit their doctors. Often, these patients have torn or ruptured discs that cause excruciating pain. But there's a new option on the horizon that could regrow healthy discs in the spine without surgery.

Rebecca Tirs spends most days curled up in bed with her pal, Jenny Bee. But this isn't how life has always been for these two.

Ten years ago, Tirs was an active 28-year-old. But then she was in a rollover car accident, where she tore two discs in her low back.

"I had a mild traumatic brain injury. I had a fractured pelvis. I had fractured scapula, fractured ribs," she said.

Tirs can barely walk. She had to quit work and give up all her favorite activities.

"It was just constant, deep down to the bone, severe pain," Tirs said. "I cried all the time."

Dr. Michael DePalma is working on a new way to heal injured backs. As part of a clinical trial, he injects growth factors, found naturally in the body, into damaged discs.

"The growth factors are that, they stimulate growth of certain tissue," said DePalma, the medical director at the VCU Spine Center in Richmond, Va.

The injection includes a growth factor called OP1, a key ingredient in the development of bone and tissue. In animals, the shot helped damaged discs grow back. Doctors say in humans, it could mean no surgery, no damage to surrounding tissue and little downtime.

"This sort of treatment may find its role in treating the disc before they get to a point beyond which only surgery is going to help," DePalma said.

Tirs doesn't know if she received a placebo or the real injection, but she noticed a slight improvement in her pain level.

"Instead of maybe an eight or a nine, I was a seven," she said.

She said every bit helps -- if it gets her one step closer to her old, vibrant self.

Researchers are still working to see if one injection is enough to ease the pain. Eligible patients have suffered lower back pain for three to six months despite physical therapy and medication.

BACKGROUND: Intervertebral discs, which form the cushions between the vertebrae of the spine and make up about a third of the spine's height, degenerate earlier than any other connective tissue in the body. When a disc degenerates, it loses height and affects the mechanics of the entire spine, possibly negatively affecting surrounding muscles and ligaments.

A major cause of back pain, research shows pain from disc degeneration affects 12 to 35 percent of the Western world, according to the journal Arthritis Research & Therapy.

"Back pain is common, and the most common source of back pain is a disc," said Michael DePalma, M.D., an interventional spine specialists at VCU Spine Center in Richmond, Va..

About 10 percent of back pain sufferers become chronically disabled. When a disc ruptures or bulges to press on a nearby nerve root, the injury is called a herniation. Experts believe some degeneration must take place before a disc herniates.

CAUSES: Aging and injury are the most common causes of disc degeneration. These factors lead to a loss of hydration in the material that makes up a disc, which ultimately leads to the loss of height. This loss of height eventually causes pressure on the nerve roots in the spine, resulting in pain.

New research suggests genes may play a larger role in back pain than once thought. A research team at the University of Alberta recently discovered eight genes linked to degeneration of discs in the lumbar region of the spine. The discovery came a year after the same team demonstrated that disc degeneration is affected in a large way by genetics.

REGENERATING DAMAGED DISCS: While medications, physical therapy and surgery can help some back patients, researchers are exploring new options for treating discs with the body's own resources. Studies examining treatments like gene therapy, stem cell therapy, cellular scaffolds and growth factor injections are underway in animals, and some in humans.

Growth factors are molecules that bind to cell membranes and activate the growth of new cells. A single injection of the growth factor OP-1 has been shown in animals to both increase the height of a disc and reduce pain, without damaging surrounding tissue. The first trial examining the treatment in humans is underway.

"This sort of treatment may find its role in treating the disc before they get to a point beyond which surgery is going to help," Dr. DePalma said.

FOR MORE INFORMATION, PLEASE CONTACT: Michael DePalma, MD
mdepalma@mcvh-vcu.edu

Gill Keighley was walking to the shops when a passer-by came up to her.

‘Are you all right?’ he asked.

Gill reassured him that she was fine but he looked doubtful. ‘Are you sure? You look in so much pain, I thought you’d been mugged.’ It was a defining moment for Gill, a 37-year-old social worker


'My back pain was so horrific, I looked as if I had been mugged' | Mail Online

A new type of spine fusion promises a shorter recovery and less scarring for the tens of thousands of Americans who undergo surgery to alleviate lower back pain each year.

WATCH VIDEO
Spine fusion offers promise for back pain suffers

Billy Lucas, 51, has experienced all sorts of hazards in 30 years as a stuntman. He's flung, fallen and fought his way through such films as Terminator, Collateral Damage and True Lies as Arnold Schwarzenegger's stunt double.

"I'm living in a world of pain, and I'm just not digging it," Lucas said.

In 1994, Lucas injured his lower back. Over the years, no amount of therapy, surgery or medication has brought him quite back to normal.

"I don't want to throw the towel in. I want to keep being prolific and working as a stuntman," he said.

Lucas got interested, though, when he heard of a new surgery – a less invasive, spine-fusion treatment called axialif.

In the treatment, a surgeon makes a small incision by the tailbone. Then, looking only at continuous snapshots of X-rays, the surgeon guides his instruments to the lowest disc in the spine.

"You don't see what's going on inside. You have to really, in your mind, have a good idea of what you're doing and also be able to adapt to what you see on the X-ray machine," neurosurgeon Dr. Justin Paquette said.

The doctor replaces the bad disc with bone and protein, and then inserts a screw that will open up both the disc space and the nerve tunnels that are causing pain.

Doctors say axialif causes less blood loss, no scarring and has a shorter recovery time than a classic spine fusion surgery.

While standard spine surgery takes four hours, axialif takes only 90 minutes. It can even be done on an outpatient basis.

Lucas might never be pain free, Paquette said, but his health will substantially improve, and soon, he'll be back in the action.

• Reporter: Allen Mask, M.D.


• Photographer: Rick Armstrong


• Web Editor: Anne Johnson

By Katherine SalantSaturday, April 11, 2009; Page F02

Every designer brings his life experience to his work. But few do it as well or incorporate as much as British kitchen specialist Johnny Grey.

Grey's unconventional kitchens are a radical departure from conventional American ones. They feature jazzy colors, original artwork, playful, custom cabinetry best described as "sculptural" and work areas that are carefully tailored to a client's measurements. He developed his style after becoming seriously ill early in his career, he said in a recent interview.

When he was 28, Grey contracted mononucleosis. The disease dogged him for 10 years, causing continuous, debilitating fatigue. After two years he was able to work part time, but he remained exhausted and had constant back pain. Hoping to lessen the pain and build enough stamina to get through the day, Grey began to study the Alexander Technique, an approach to body movement developed more than 100 years ago by an Australian Shakespearean actor named Frederick Alexander to help him overcome stage fright.

The Alexander Technique teaches you to rethink the way you perform everyday tasks so that you do them more efficiently with far less energy, Grey said. The process also helps to reduce muscle tension, often the source of pain.

In describing how the technique helped him, Grey said that most of us waste far more body energy than we think. For example, he recalled that when he pantomimed brushing his teeth in a class, "My teacher showed me that I was using my entire body, but I only needed to use my wrist."

Grey began to rethink the way he prepared food. Zeroing in on even the smallest gestures, he realized that most of the body motions involved in cooking were limited to his forearms and hands. In ergonomic terms, the critical dimension for determining the height of work surfaces was not body height, as he had always thought, but the distance from the floor to the underside of the chef's elbow when it is bent at a right angle. He refers to this distance as the "flexed elbow."

The most demanding task in the kitchen is knifework -- the chopping, slicing and dicing. It requires a rapid up and down forearm motion. You can do this most efficiently when the counter height is three to four inches below your flexed elbow, Grey said.

Standing over a cooktop, you make a different motion -- stirring or turning with a tool that has a long handle. For this you'll be more comfortable if the cooktop is about five to six inches below your flexed elbow.

For bread or pastry making, you need to get your weight over the rolling pin or the dough you're kneading. For these, the counter should be eight inches below your flexed elbow.

For washing up, Grey said, the actual work surface is the sink bottom, which should be eight to 11 inches below your flexed elbow, while the counter height to either side of the sink need only be two inches below it.

When designing a kitchen, Grey varies counter heights according to the task to be performed at each. But, he said, the flexed elbow measurements are meant to be guidelines, not written in stone. Practicality dictates some flexibility in determining counter heights so different people can work in the same kitchen. But when the height difference between cooks approaches 12 inches, Grey designs the kitchen for the person who does most of the cooking, and adds a second food prep counter to accommodate the other person.

While getting the height of the food preparation area right prevents muscle strain, getting the cooktop height right has other benefits, Grey said. When it is lower, hot oil is less likely to splash in a shorter person's face.

In recent years many American kitchen designers have recommended raising the dishwasher so that a tall person or someone in a wheelchair can use it more easily. Grey concluded that keeping this appliance low made the task of loading and unloading a dishwasher more difficult for everyone, and he likes to raise it 10 to 14 inches.

Grey's experience with the Alexander Technique led him to study how body movement is affected by peripheral vision, which, surprisingly, turns out to be another source of muscle tension. When your eyes sense sharp corners on the edge of your path, they activate a stress response to ensure that you avoid hitting anything. This makes you more tense.

To counteract this and make the time spent in the kitchen more relaxing, Grey developed what he calls "soft geometry." His counters have round edges; his islands and the cabinetry below them are circular or elliptically shaped, while the counters and cabinetry opposite them are often concave. He also likes free-standing, floor-to-ceiling cylinder-shaped cabinets for storing large pots and pans. All these unusual shapes make the space feel more playful, which is also relaxing.

The unusual shapes would seem to require a bigger area for a kitchen, but Grey said the opposite is true. With a concave-shaped kitchen, you can get more cabinets and appliances into a smaller space, while freeing up more floor area so that two or more people can work at the same time.

Zeroing in on specifics, Grey said he vastly prefers end-grain butcher block for a food prep area because the wood is so dense it won't dull knife blades, it won't be scarred by chopping, and it's easy to keep clean. The actual size of a food prep area should be small, only about 18 to 24 inches wide with space on either side for pots or bowls. Grey likes a generously sized island, but he divides it into separate task areas, each with a different height.

American kitchen designers tend to box up everything behind closed cabinet doors, but Grey prefers open storage adjacent to the place where an item is used. He maintains this is more convenient, eliminates unnecessary movement and makes the space feel lived in. He puts plate racks above the dishwasher, open racks below a cooktop for large pots and hooks above it for cooking utensils or smaller pots.
For more information on Johnny Grey and his kitchens, see his book "Kitchen Culture: Reinventing Kitchen Design" (Firefly, 2004).

Katherine Salant can be contacted via her Web site, www.katherinesalant.com.

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

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

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

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

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

By Mandy Appleyard

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

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

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

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

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

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

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

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

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

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

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.

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)

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.

Well we are nicely into the new year and rising to the new challenges that face us. It has been a busy time for me since Christmas so much so that it feels that Christmas didn't happen, it went that quick. Things have been going ok for me and for Mum, Mum is progressing nicely with her physio and has tried elbow crutches very briefly not too keen !!!. I am still suffering with pain in my hips and back and I am hoping to see my spine consultant soon, I haven't seen him for 6 years, so in so respects although I am going with a new problem, it will be nice to see him and let him see how my back is doing. I am hoping the pain will settle soon as its pulling me down a little I have to say as I don't feel as mobile as I have been and feeling a little frustrated.

I have some high points to report on so its not all doom and gloom, during my time off at Christmas it sort of came to a head really how difficult it was becoming for Mum and me in the kitchen with us both using wheelchairs in there, I need to bee in my powerchair to help to carry things and help prepare things. So I decided that enough was enough something had to be done, I contacted my occupational therapist to arrange an assessment for Mum and to see if we could convert our existing kitchen into a height adjustable one so that it is a bit easier for us both. Anyway my OT came out and carried out the initial assessment and is very hopeful that we can have the kitchen adapted Way to go!!!!!, we are just waiting for the architect to come out from the Council and the kitchen designer to have a look at the existing space and what can be done.

While we are waiting for them my OT is arranging for Mum and I to go to our Independent Living Centre where they have a fully adapted kitchen installed, we cant wait to go and have a look and to test the gadgets.

Wellington, Jan 5 : A simple torso-rotating exercise can significantly improve the condition of people with scoliosis, where the spine curves in an S or C shape, according a Kiwi researcher.


David Woodbridge, an Auckland physiotherapist, says that repeating the simple back-strengthening exercises can make a major difference to the lives of those suffering from the inherited condition.

It is believed that if a mother has scoliosis as a teenager, her daughters have a one in four chance of developing it as a teen, reports the NZPA

In scoliosis, the spine is curves by more than 10 degrees. While sometimes the curving stops naturally, but at times it continues to progress and the curve reaches about 30 degrees.

Currently, the patients are fitted with a brace, which may stop the curve getting worse.

If the curve reaches 40 to 45-degree range patients often have to undergo an operation to have steel rods inserted along their spine.

Woodbridge insists that a simple torso-rotating exercise treatment stops the curve getting worse, and can correct patients' spines before they reach that 40-degree range.

During the study, 95 per cent of their patients with curves under 40 degrees stopped getting worse, and in many cases improved.

One spine straightened out an amazing 43 degrees to almost perfect.

Woodbridge said that the exercise could also help alleviate the pain of the condition in older people, but might not be able to improve it permanently.

What a busy time of year it is for everyone, and I have to say I feel like I have been on one of life’s rollercoaster’s, going up down and doing somersaults. Although there has been pain along the way, the majority of time it’s been great. The last time I wrote I was being investigated by my Consultant for severe pain in my hip, I am please to say all the scans and test came back clear and I am currently receiving inter-differential treatment from my Physio, for Sciatica. We are hoping that after the course of therapy things will settle down, if not I have to go back and see my Spine Consultant to see if the metal is irritating the nerves. I have had one course of treatment and things seem to be ok so I’m hoping that things will have settled by the end.
Over the last couple of weeks I have had to cope with a lot of changes at work, firstly moving offices and then my manager leaving to start a new life in Lanzarotte (and I wish you all the very best if you read this). I like my new office because I am back on the ground floor and I don’t have to worry about getting stuck in the lift, and therefore my stress level is much reduced which is great for me. I also like it because I can get in and out on my own so therefore I am gaining back my independence, and as far as I am concerned I feel like I have the control back and because I have that I can give my full effort in my job with ease, because the environment is much better for me and it isn’t such a battle for me everyday. I know we battle in our everyday life for everything but it is nice that I don’t have to be doing it constantly I kind of got a little respite so to speak, a chance to recharge my depleting batteries.
Mum is doing great with her Physio so much that she is catching me up, and I am so pleased for her, its quite strange now to see us both doing our home exercises together, but I help her and she helps me. So far Mum is really well, so we think that we might have our first Christmas at home, this being the first four years and we can’t wait.
A couple of weeks ago Mum and I went to Middlesbrough shopping with the help of Shop Mobility I have got to say what a great service they provide with volunteers to push people around the shops. If it wasn’t for them we wouldn’t be able to manage. It turned out to be a great day, buying lots of Christmas presents and hitting the sales in Debenhams, mind you I think we both where a bit overwhelmed by the number of people barging shopping, you wouldn’t think there was a credit crunch. We had to wait 10 minutes just to get the lift; I have never seen so many people and queues out the door. I know Mum likes to be in the think of it but even I found it a bit much.
Well this morning we finally woke to see the last of the snow, nice to see it cleared up after the last week we have had, had a few wheel spins! I love being inside watching it but I don’t like it when I have to go out in it

Three weeks ago, I sailed the pacific seas to the Gulf of Mexico. I stopped in the ports of: Cabo San Lucas, Loreto, Guaymas, Topolobampo, Mazatlan, Sinaloa, and Puerto Vallarta. This was an unexpected trip, to a part of the world, I always wanted to see. My in-law’s got an incredible deal on a cruise, and asked if we would like to join them. So how could my husband and I pass up such a wonderful offer. So we said yes.
However, my imagination, could not prepare me for what I was truly about to see witness, and, or stumble upon. The MS Ryndanm, and all their crew, were about to treat me with much care, and take me on a trip of a life time.
As I traveled the 2,726 nautical miles of breath taking seas, my sea legs became one with the ocean floor, and, I was prompted to remember once again, of all the things I have been blessed with, within my life; and that I have been given a chance to glimpse, observe, and participate in. We departed the shores of San Diego, on October 12, 2008, on a cool evening, as my husband, his brother, his wife, and my sister-in-laws brother all waved goodbye to the pacific shores we left behind.
This was the longest cruise I had ever taken or been on. But before we even traveled more that 100 knots, we were summonsed to a passenger boat drill to insure everyone’s safety. Although, minutes before, my sweet, hubby, Chris, left our room; on a heroic search to find ice cubes. I ask you? What was he doing looking for ice cubs at a time like this? After more then 5 minutes of wondering curiously, I began to get a bit frantic.
Where was he when I needed him the most? As on our last voyages to sea, he was right by my side to help me tie my life jacket to my person. This time, however, his timing was off, and got discombobulated by where our cabin was laid out. So I pulled out our life jackets from the closet and proceeded to walk to my destination point with concern.
Over a hundred people passed me by to get to their designated station. Fortunately, for me, while walking, I found all my family members except for Chris, whom I wanted to, find the most! Then, after a few moments of worrying and laughing, with my family jokester, my husband almost pasted me by.
“Hay honey, where do you think you’re going?” As I tried to direct and real him in with my voice, while my newly adopted brother-in-law, Willie, was making me, and his sister Laura, giggle uncontrollably. After we were all lined up like penguins, four sort bells and one long bell rang as we were dismissed to go, and play. We were off to commenced voyage to Cabo San Lucas where clear skies and fresh gales awaited us.
Port after port, my mind took hold on the vastness of what I was seeing. I tried to capture pictures both in my mind, and with my photo lens, as I snapped the images that reach out and touched me the most. Harbor after harbor, I saw the poverty of the Mexican people. Yet, I also saw an attitude of desperateness, need, kindness, and gentleness; longing in there eyes everywhere I went. Not like in the United States where greed saturates our country, and our hearts and minds. These men, women, and children are grateful even through much haggling takes place in the market place and amongst the streets. They struggle with a reminder everyday of what we take for granted.
While riding on a bus into Guaymas and Topolobampo, the passengers were told by the guide of the great destruction from a hurricane not more than two or three days before we arrived in their city. The guide explained how in some parts of the city there was no infrastructure as it was just whipped out. Nevertheless, these men, women, and children pick themselves up and continue on only eighty dollars a week. It reminds me of what so many of our people go through in trying to carve out a living in our world. This is a direct representation, of the subtle injustice, that most of us in the disabled community deal with every day of their lives.



The next day we docked in Loreto, where my two brother-in-laws hailed a cab. Boy what a ride that was! When we started out, everything was smooth riding; as we saw the sites of the most rich and famous in their town. And hotels right off the water’s edge. But then, things got real bumpy! We were out for a ride of our lives! Instead of taking a paved road thirty minutes out of town, to an old Mission we wanted to see, we wound up taking a path that almost threw my husband for a loop.
The car we were using was not a four wheel drive. This lack of amenity made it difficult to travel and also unnerved my husband to no end. He was pulling his hair out with disgust, revolt, and fear. There were so many rocks, river beds, and obstacles to cross, that it sometime seemed “that we might not make it to the church on time.” Once we had gotten out of the cab, seen the sites, and had delicious casadia’s, and tacos; the road and return home proved much easier on everybody.
I truly felt a family connection with the taxi drivers, too. Through laughter, communication and connection, in their native tongue, and having married into a family that speaks the language fluently, it made the excursion and trip that much more comfortable, warm, exciting, valuable, and inviting.
Especially, our last stop! When my husband, my family, and I; visited the port of Puerto Vallarta. The cab stopped to let us observe the breath taking sculptures, to cross the street, and to visit and take snapshots of the awe inspiring sand castles. And oops! Yes, you got it! The street was so full of pot holes, rounded rocks, and gullies, that I took a flying leap into a hole, all by my little ol’ lonesome. No body by my side but me- I was walking alone and stepped right into it!
Thank God no one hit me! And thank God, I did not break a foot, or leg, and that it was our last dock to visit! If I were in the United States, I would have been terrified to be further hurt. Thankfully, I wasn’t. Thankfully all I got was a very, very sprain ankle and calve. Someone else in my shoes, or position, would have sulked, gone back to the ship, and perhaps, even gone home, but I didn’t!
The experience was not easy, as I was in pain, and could not walk like I normally do, but I found a way to keep smiling like I always do. In my mind I knew this was a trip and a moment of a life time. I knew it was truly a gift and so worth while.
Moreover, I knew that I might never ever get this kind of opportunity or chance to take in these majestic marvels again, so I forgot about my discomfort and smiled a ray of sunlight for Gods beautiful landscape, and backdrop. I also was shown how unconditionally I was loved and cared for by my family and complete strangers.
Thus, I immediately found gratitude in my own heart, and found new positive ways, to continue on my journey with gratification in my own inner self and being. My positive attitude, along with all my past triumph and tribulations, gave me a wonderful, exuberant energy, and willingness to make the best of a difficult situation for all involved.
I was so accommodating, that we went forward to visit the cost line’s and city scapes with pure pleasure and delight. So, with a bag of ice cubs, surrounding my leg, we visited an organic distillery, where all types of wine and liqueurs were made, and we drove to Casa Kimberly.
For those of you who do not know what Casa Kimberly is, it is now a bed and breakfast. Although in the early sixties, it was where Liz Taylor’s, and Richard Burton’s had their home. One could see the pink remaining bridge that linked the two homes together.
Even though I tripped and fell at my last port, I can’t express to my readers how wonderful, breathtaking, and joyous my time in Mexico and on the ship was.
Travel is something I feel is very vital, freeing, emancipating, and uplifting for us all, but especially for the disabled community. The more communicative, active, visible, and perceptible we become, the more we partake in life’s precious activities; it cultures, and joys of the world, the more we can breakdown the stereotypes, and promote the truths of our lives and beings.

A teenage gymnast is setting her sights on international glory after pioneering surgery to cure her twisted spine.

Last Updated: 1:32PM GMT 30 Nov 2008

Ruth Smith, 13, was suffering from a rare condition called scoliosis which meant her back was permanently bent in an 'S' shape.

The condition was diagnosed five years ago and had caused her spine to grow as much as 78 degrees off straight.

And it even meant that one of her ribs was sticking out of her right side because her whole ribcage was twisted.

Normally with scoliosis, two titanium rods are screwed into the spine to help straighten it and brackets known as 'dominoes' are fixed in place to allow the rods to move.

But with young children this can cause long term problems because fixing just two rods in place doesn't allow the spine to grow naturally.

Ruth's spinal surgeon, Evan Davies, felt that because of her age and the high level of flexibility needed for her gymnastics this would not work - so he invented his own.

Mr Davies teamed up with a Swiss professor of engineering to design and manufacture the groundbreaking 'Davies' Dominoes'.

And just three months after the nine hour operation, Ruth, from Portsmouth, Hants, was back on the vault - and is now setting her sights on the 2012 European Championships.

Ruth's mum Miriam, 44, said the change in her daughter since the operation, which took place on June 3, has been 'amazing.'

She said: "We first spotted there was something wrong when she was eight and she has been monitored ever since then

"Evan Davies got involved about two years ago when the curve in her spine began to get dramatically worse.

"She actually kept up her gymnastics right up until a week before the operation.

If Ruth had been treated in the conventional way, with two rods rather than four, she would have had to return to hospital each year for an operation.

But because of Davies' Dominoes, the only operation she will need in the future is when she stops growing.

Ruth said she was nervous before the operation but says that since getting back on the floor she feels 'like there was never anything wrong.'

She said: "Being able to do gymnastics without any pain is amazing for me.

"I was nervous before the surgery but it feels fantastic now and I can do everything I could before.

"It feels like there was never anything wrong."

Ruth, who trains four times a week, added: "The thought of not being able to do it anymore was horrible - it was worse than the pain itself.

"Now I would love to take my gymnastics further and be in our team for the European Championships."

Mr Davies, who is a consultant in spinal surgery at Southampton General Hospital gained international reknown last year when he reattached a junior racing driver's head to his spine after a horror crash.

Chris Stewart was just 12 years old when he suffered 'internal decapitation' in the accident.

Chris astounded experts by making a full recovery from his life-threatening injuries.

Video games keep patients engaged

While nobody is recommending joint replacement as an enjoyable option for your next vacation, the often-arduous rehabilitation process just got a lot more fun.
Patients at the Westland House in Monterey are improving their strength, balance, dexterity, coordination and flexibility by playing games on Wii, Nintendo's virtual-reality video experience that allows players to simulate the physical actions of activities like tennis, boxing, golf, baseball, soccer, bowling and a multitude of others.

The physical motions necessary to play those games on the Wii system are proving to be effective treatment for a wide range of rehabilitation clients, including those recovering from strokes, joint surgery and brain-injuries, as well as people who suffer from acute and chronic pain.

"This doesn't replace any of the rehabilitation techniques we've been using, but it's a valuable adjunct to what we're doing here," said physical therapist Sherry Brient, rehabilitation supervisor at Westland House. "These are being used nowadays at schools, convalescent homes, senior centers. More recently, the rehab community has discovered Wii as a good tool to enhance the rehab process. We initially had a loaner here, but we liked it so much that we bought our own system."

A hand-held control interacts with a receiver. A television screen shows an opponent — a tennis player, a boxer, a baseball pitcher. Or a golf course. Or a realistic bowling lane with pins waiting at the opposite


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"I actually worked with a man who had been a boxer when he was younger, so we tried him out with the boxing game," said Tony Fusco, an occupational therapist at Westland House. "He was dealing with some brain issues, and it was the first time I ever got a smile, or any kind of real reaction out of him."


Unathletic can benefit


The enjoyment factor is a major part of the reason rehabilitation specialists are sold on the Wii as a therapy tool. Routine exercises — weight training, aerobics, etc. — that are designed to help a patient regain strength, balance, endurance, flexibility, dexterity and coordination often can become tedious. The patient can lose interest.

"It keeps the person entertained, more involved in their care," said Shilpa Oza, an occupational therapist. "They're having fun while they're exercising, so they tend to be much more engaged in what they're doing."

People with no athletic history, and little ability, can benefit from Wii and enjoy the games, because many of the game programs are designed to accommodate various ability levels. Ex-athletes and weekend warriors are naturally enamored.

"It works really well because a lot of our patients have a history with some of the sports that are available on Wii," Fusco said. "They like to play, they have some skills, and it's realistic for them. I've worked with a lot of tennis players, a lot of golfers, a lot of bowlers."

Kate Staples, a Seaside resident who suffered a stroke about a month ago, carried a 160 average as a young bowler and was excited to add Wii's bowling game to her rehabilitation.

"It was a lot of fun. I enjoyed it a lot more, both mentally and physically, than the regular exercises," she said. "I wasn't very good at it because it's a little bit different than real bowling, but it gave me confidence because it helped me regain some of my balance."


Programs measure balance


Pacific Grove resident Daphne Winters, another stroke victim, hasn't bowled since she was "in my 20s," she said, but fell in love with Wii during her physical therapy sessions.

"I did a lot of other kinds of exercises, like walking on a treadmill with my legs tied together with elastic, but the bowling was great. I got three strikes in a row," she said with a laugh. "I had to work at it a little bit, though, before I could figure out how to get the curve back in my ball."

Specific programs are designed to measure a person's balance. In one game, the player walks on a virtual balance beam, watching his cartoon counterpart move across the video screen. Too much weight on one foot will cause the cartoon character to lean to one side, waving his arms frantically, as if to regain balance. Over-adjust, and the character wobbles the opposite way.

Another balance-oriented program shows the cartoon character standing on a round disc. The player attempts to maneuver a ball into a hole in the disc by adjusting his balance to tilt the platform. If balance is poor, the ball will roll off.

"We can learn things about the patient by watching them as they play," Fusco said. "We can see whether they have issues with hand-eye coordination, or cognition. We can see how they process some of the instructions. A lot of games are too difficult for certain patients, but we can modify the games to accommodate those people."

One of the most-attractive aspects of using the Wii as an enhancement to normal physical-therapy methods is that the games can be played at home, after treatment at the Westland House has ended. Some patients purchase a unit for home use and use it as a viable and fun way to exercise.

"We've had a lot of patients who, when they're done here, say 'I'd love to get one of these,'" Brient said.

Well it seems like it has been a while since I wrote and I know it has been, I have had some highs and lows this last couple of weeks, and it started of with my best friend Daniel, who you may of read about in previous writings, well he recently had to undergo further spinal surgey due to his pelvis twisting, so he had to have more metal work put in, and although it was a big operation, he was home in no time and on the road to recovery, I have kept uptodate with his progress by phone and last week I had the greatest day because I logged on to my computer and webcam and got to see for my self how great he is doing Way to go Daniel!!!!! keep on keeping on mate

Then have had had a bit of a rough time with a chest infection and I had to have some time off work, so it shows how bad it was because it is ages since I have been on the sick from work, but following the infection I developed servere pain in my left hip and my Physio thought it might be a hernia from all the coughing I had been doing, so I ws off again to the doctors but luckily everything was ok. Although I still had the pain and it wasn't getting any better so I decided to go and see my othropedic consultant, who has looked after me for many years now.

After a full examination I had to go for an xray and I am and then the look of worry came and I was sent for an ultrasound scan of my pelvis to check for any infection, which could be the cause of the pain, but luckily it came back ok!!! a sigh of relive I can tell you, and now I have been given the all clear I am waiting to see my Physio and see if we can settle things down a bit as its still really painful.

For the past two weeks, I have been facing many effaceable emotions. They have been as deep, and as painful as I can ever remember. However, I kept reaching out for something that would soothe my soul. Something that was positive, something that was touchable, that could and would bring me physical warmth, and a feeling of safety, and something tangible that would help me have something to recognize, release, and also would help me recharge my battery - It had to be something calming that could make me feel better, within; something that would bring peace to my heart-

It had to be something that would make me feel better quickly! Something that would ease my pain, and something that would bring me hope to remember the good things about me, my life, and what I knew was right on! It had to be like turning on a light switch- something that would immediately help me to recognize my worth, my meaning as a human being, and all that I went through was not in vain.

You see, I was very down and depressed because my thoughts and feelings were not being considered or taken into consideration by immediate family members. And this blew me away as I think of everyone- every one!

I talked with two of my dearest and closet friends, and while it helped, it did not solve or take away all the pain I was facing.

Then a week later, about two days ago, I heard a song that my dear, mama would sing to me as a child. We would sit together as the music and lyrics played. We would weep through the whole song with the truth that these lyrics spoke.

This is just one of many of my simple ingredients that continually makes me smile and feel blessed with my life!

The song was "Smile" and it was written by Charles Chaplin Jr.. In his lyric’s he says…

"smile, through your heart is aching, smile, even though its breaking, when there are clouds in the sky, you’ll get by, if you smile through your fear and sorrow, smile and maybe tomorrow, you’ll see the sun come shining through for you. Light up your face with gladness, hide every trace of sadness, although a tear may be ever so near, that’s the time you must keep on trying, smile what’s the use of crying, you’ll find that life is still worth while if you just smile…"
As I heard these words, my pain and sorrow melted. My reason, faith, and hope returned, and I was back on track being my beautiful, self once again.

By Kim Nguyen, Staff Writer

Two-month-old twin boys visited Dr. Alexis Shelokov at the Baylor Scoliosis Center at the Baylor Regional Medical Center at Plano.

The twins, Tristan and Coltan, were born to Tina Dooling, who was treated by Shelokov two years ago.

Dooling, a Saginaw resident, had heard of Shelokov through friends and other doctors, but was hesitant to seek his treatment because of the distance.

“I looked him up to read about his experience and decided to at least have a consultation,” Dooling said. “It wasn’t until our meeting when I decided that he was my doctor.”

In October 2006, Dooling underwent a complex, multi-house back surgery at Baylor Plano in which pins and rods were put in her back to straighten a 45 degree curvature in her spine. Dooling knew she had scoliosis for the majority of her life; she was just unsure to how severe the scoliosis was.

The Doolings wanted to start a family but Tina had been told that while pregnancy was possible, she may experience severe pain and may need to be on bed rest. At the end of August, she proved everyone wrong when she gave birth to Tristan and Coltan in what she called the “perfect pregnancy.”

“When we found out that I was pregnant, I immediately became concerned about back pain,” Dooling said. “Imagine how shocked I was when the OB/GYN told me that I was carrying twins!”

Dooling said she was in constant communiqué with Dr. Shelokov and his office throughout the pregnancy. She was concerned about strain put upon her back by the pregnancy, but the office staff were supportive and certain her back would OK.

“Women who have undergone surgery to correct scoliosis are often wary when it comes to pregnancy and delivery,” Shelokov said. “But fortunately, the operation that had is designed to facilitate pregnancy and an active adulthood and a good quality of life.”

Shelokov said it is mainly in the mindset of the patient that will determine the length of the post-operative recovery and rehabilitation.

“Tina was the perfect patient,” Shelokov said. “She brought to the table a lot of positivity.”

Dooling’s back curvature has been recently measured at 10 degrees.

Dr. Alexis P. Shelokov, M.D., is the Medical Director of the Baylor Scoliosis center and president of Consulting Orthopedics. He is an orthopedic spine surgeon who treats pediatric and adult scoliosis and kyphosis. In practice for more than 18 years, he has performed more than 6,000 spinal operations. Shelokov is one of only a few dozen surgeons in the United States who regularly perform scoliosis revision surgery on children and adults who have had unsuccessful treatment in the past. Shelokov is board certified by both the American Board of Orthopedic Surgeons and the American Board of Spine Surgeons. He is also a member of the Scoliosis Research Society, the North American Spine Society, the Texas Spine Society, the American College of Physician Executives, the American Medical Association and the Dallas Medical Society.

The Baylor Scoliosis Center is the first in the Dallas/Fort Worth area devoted to the treatment, surgery and care of advanced spine curvature in adults. It is a nationally recognized center of excellence in scoliosis diagnosis, research and treatment and is involved in an international outreach effort with physicians around the world. The Baylor Scoliosis Center has treated patients with severe deformities from nations throughout the world, including Korea, Russia and Latin America.

The Baylor Scoliosis Center at the Baylor Regional Medical Center at Plano is located on the eighth floor of Medical Office Pavilion 1, 4708 Alliance Blvd. in Plano.

More information on the Baylor Regional Medical Center at Plano can be found online at www.baylorhealth.com. More information on the Baylor Scoliosis Center can be found online at www.thebaylorscoliosiscenter.com.

By Erik Nieuwenhuis
October is National Physical Therapy Month, and this year’s theme is “It’s All About Movement!”Physical therapists are the movement experts. We help people move forward. e help people who have had a stroke or an amputation regain their independence. We help millions of Americans manage or eliminate their neck or back pain. We educate and lead workers and companies to work smart and improve the ergonomics in their workplace and homes. We help children with cerebral palsy improve their overall function and participation in life.Movement is essential to our everyday lives at work, home and play. Movement is an essential ingredient in your daily health and quality of life! Having the ability to move safely and effectively is crucial in our lives and the lives of the people physical therapists treat. The physical therapy profession empowers people to move forward and take control of the movement that is essential in everyone’s life.

What is a physical therapist?Physical therapists are good people to know. They’’re educated in understanding the interaction of all your body parts. Their hands-on approach begins with examination, diagnosis, and then treatment of the immediate problem. Then they teach you how to take care of yourself by showing you how to do exercises and how to use and move your body properly to gain strength and mobility while preventing injury and wear and tear to your body. You’ll find them advising on proper work smart posture and body mechanics in the workplace, treating injuries, consulting on fitness/wellness and self care of the working, aging body. You’ll also find them treating patients in the hospital, clinic or home settings. Today physical therapists provide help for every part of the body and to everyone from infants to the elderly, serving more than one million people each day.Where do physical therapists practice?- Outpatient clinics or private practice n 41.5 percent- Outpatient hospitals n14.5 percent- Acute hospitals n 13.1 percent- Patient’s home (home health) n 7.9 percent- Skilled nursing, extended care, or sub-acute facilities n 5.6 percent- Academic institutions n 4.8 percent- Schools (Pre-School, Primary and Secondary) n 4.1 percent- Inpatient rehab facilities n 3.5 percent- Hospices- Industrial, workplace or occupational environments- Fitness centers, health clubs, sports training facilities- ResearchAPTA website June 2007 http://www.apta.org/Educational requirementsCurrently, nearly 200 colleges and universities nationwide offer professional physical therapy education programs.Des Moines University, the University of Iowa, the University of Nebraska Medical Center and the University of South Dakota offer physical therapy programs close to the tri-state area. Western Iowa Tech Community College also offers a physical therapy assistant program. Most physical therapy programs require a student graduate from an accredited four year college and take prerequisite classes for the physical therapy school the student is applying to.Employment outlookThe demand for physical therapists is expected to grow much faster than the average for all occupations through 2014. The demand for physical therapists should continue to grow as the number of individuals with disabilities or limited function increases. Job opportunities are expected to be particularly good in acute hospital, rehabilitation, and orthopedic settings because the elderly receive the most treatment in these settings. Plus, widespread interest in health promotion should increase demand for physical therapy services at the worksite and health clubs. A growing number of employers are using physical therapy services to evaluate worksites, develop exercise programs and teach WorkSmart and safety habits to employees to reduce injuries, claims and costs.Daily job tasksWe treat patients to: improve mobility, relieve pain, increase strength and balance, improve coordination and prevent or limit permanent physical disabilities of patients suffering from injuries or disease.Physical therapists restore, maintain, and promote overall fitness and health.Our patients include accident victims from motor vehicle accidents and slip, trip and fall injuries, individuals with disabling conditions such as lower back pain, arthritis, heart disease and stroke, diabetes or those with amputations, fractures or total knee and hip replacements among others.Physical therapists determine the patient’s ability to be independent and reintegrate into the community or workplace after an injury or illness with the goal of improving how an individual functions at work, play and home.Therapists also teach patients how to use assistive and adaptive devices to improve their safety and independence.Sources:1. American Physical Therapy Association Website at http://www.apta.org/2. US News and World Report 20063. Erik Nieuwenhuis MS, PT My Life and Career as a Physical TherapistContact Erik Nieuwenhuis at St Luke’s IMPACC WorkSmart and WELLness Services at 712-279-1842 or Nieuween@stlukes.org

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



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

'Wiihabilitation' is Fast Becoming an Accepted Form of Therapy at Physical Therapy Clinics Statewide

SACRAMENTO, Calif., Oct 14, 2008 /PRNewswire via COMTEX/ -- With October being National Physical Therapy Awareness Month, expect Nintendo Wiis to be flying off the shelves. Among the first in line will be members of the California Physical Therapy Association (CPTA), who stand by the video game console and its accompanying sports and fitness games as one of the best therapeutic technology inventions to roll out in a long time.
"As physical therapists, we are movement specialists engaged in the CPTA-sponsored MoveCalifornia campaign to get people active and fit again. In the midst of this, we're seeing a therapeutic phenomenon of sorts with kids, grown-ups and geriatric patients getting off the couch and learning how to properly use the Wii for core strength and balancing exercises," said CPTA member Amy Calhoun Sanchez, PT, DPT, CSCS, NSCA-CPT.
Sanchez is a doctor of physical therapy working in the outpatient rehabilitation department at a local Los Angeles hospital and provides pediatric home health care for developmentally delayed children.
"In the clinic setting, we treat patients with acute and chronic pain, those recovering from surgery or stroke and many other conditions with specific balance and strengthening exercises and manual therapy, and they respond to that," added Sanchez. "But the Wii sports games are interactive, fun and entertaining, and patients become more engaged playing with them. By teaching patients how to use the Wii in a clinic setting, we empower them to continue their exercise, fitness and training with the Wii Fitness in the comfort of their own homes."
While Sanchez emphasized Wii is helpful in preventing injuries and falls and increasing functionality, she cautions that anyone with undiagnosed pain or untreated injuries should refrain from using the Wii without professional guidance.
"Playing a Wii game too soon after an injury can be extremely harmful to a person's health and even set back recovery or lead to re-injury if he or she is not properly evaluated by a physical therapist first," said Sanchez. "A therapist will help to decrease pain and improve posture before recommending or advancing a Wii regimen tailored to the individual's specific needs."
Sanchez noted most physical therapy includes core stability training, but often it is difficult to teach people how to engage their core. "They tend to arch their backs and put too much weight on their heels in a way that causes further pain with movement."
"What's so great about the Wii is it allows a patient to know where the body is in space by showing real-time movements on a screen in simulated yoga, aerobics, strength training and balance exercises," stated Sanchez. "The Wii is the next best thing to simulating an environment on the golf course or tennis court, so we can see first hand what a person is doing wrong and correct that movement. The Wii makes for simple and fun therapy and, right now, is the coolest, new therapy around."
MoveCalifornia is a CPTA-sponsored statewide public education campaign designed to call attention to the importance of wellness and daily physical exercise and the unique role physical therapists play in these areas. For more information about MoveCalifornia, visit the MoveCalifornia Web site at http://www.movecalifornia.org.
SOURCE California Physical Therapy Association

15 October 2008, 05:31:21 | adiemusfree



As the proud possessor of a brand new Wii and WiiFit, I’m a convert to the addictive powers of the Wii. I’m not the only, and certainly not the first person to think of the rehabilitative potential of the Wii - in fact it’s been one of the most successful ‘cross-over’ toys that the computer geeks have come up with.

I am planning to use the Wii and WiiFit to study whether it can help develop balance, activity tolerance and especially increase proprioceptive awareness in people experiencing persistent pain and complex regional pain syndrome. There are clinical guidelines I’ve just discovered here at RehabCare who have produced a podcast covering clinical practice guidelines for using the Nintendo Wii. And I’ve just found an occupational therapist’s site called WiiHab!


I’ve had mine for two days now, I don’t want to admit to the number of hours I’ve spent on it (sad but true!), and there are a few quibbles about it for my purposes: the main problem with the WiiFit component is that it’s not modifiable so as a therapist I can’t select the exercises I want to prescribe for the people I work with; and I haven’t yet worked out how to transfer the cumulative graphical information into another format. But I do like the English (UK) instructors accent, and that it’s possible to view how to do the exercises from front or back. I also love the portability of it, and the relative lack of bits and pieces apart from the controller and WiiFit platform.

With a bit of tweaking from some geeky types, I’m sure it will be possible to modify the bits I’m less than happy with, or perhaps Nintendo will work out that this is a feature that it could provide in a ‘therapy-specific’ version of the programme. From the search I completed on Google just using the term ‘Wiihabilitation’ which came up with 9,920 hits, it seems clear that there is a demand for it within health and rehabilitation settings.

For pain management? Well apart from my specific study, I think the Wii has further application as an alternative to the many gym-based exercise programmes that are funded by major rehabilitation funders such as ACC or WorkCover.

To date there is no conclusive evidence that any specific fitness programme is superior to any other for the management of chronic pain (particularly low back pain), so it seems reasonable to think that any activity that is engaging, motivating and appeals to families might be able to be purchased or loaned as part of a pain management programme. Under the supervision of a therapist (occupational therapist or physiotherapist) a person with chronic pain can be guided through the process of gradually regulating their engagement in activity while at the same time learning how to integrate pain management skills.

It would be even more appropriate if the therapist can select and grade the level and type of activities the person uses. Hey, adding in a couple of biofeedback elements (like a heart rate monitor or skin conductance monitor) would make it even more useful!

The main concern I have with any exercise-focused pain management is that in the enthusiasm to engage in ‘fitness’ it becomes the goal rather than a means to develop activity tolerance, reduce avoidance, and a method for developing appropriately paced activity.

I think a time-limited loan or rental of something like the WiiFit could be a great way for someone to develop the skills until they move into the next phase of learning to live with chronic pain - returning to ‘normal’ activities. And if fitness or exercise becomes part of the person’s general pain management regime, and a Wii is something they use, it might be helpful. Of course, if they prefer to salsa dance, go rock climbing, trot around the shopping mall at full tilt, or perhaps go to a local tai chi class - then that might be a better option!

The main thing is that here is a gadget that is fun, well-accepted, and emininently modifiable. Oh, and it makes for team-building as well as family fun while the therapist/s are learning to use it!!

by Gloria McShane,

FOLLOW your dreams - that’s the message from a visually-impaired entrepreneur to other disabled people.

Chartered physiotherapist Chris Ferguson, 49, has had the progressive eye disease retinitis pigmentosa since her teens, but that did not stop her taking the plunge and setting up her own clinic six months ago.

And because the clinic was purpose-built, she designed it around her needs.

An NHS physiotherapist at the University Hospital of North Tees in Stockton for more than 16 years, she had already begun a home-based business, but it was growing fast and she needed new premises.

After holding routine office jobs in her twenties, Mrs Ferguson trained as a physiotherapist and qualified in 1991.

“I’ve never experienced any discrimination,” she says. “Physiotherapy is known as a hands-on profession and I trained with two blind girls.”

A major hurdle was the use of computers in the workplace, for everything from medical records to appointments.

So Mrs Ferguson has two assistants who help her with computer work and reception duties, as well as another who reads professional journals to her.

The support workers are mainly funded by Access to Work, a Government scheme that helps with the costs of specialist equipment and assistance for disabled employees or those in self-employment.

At the clinic, Mrs Ferguson treats conditions, including osteoarthritis, lower back pain and tennis elbow, and business has been so brisk she often works until 8pm, because she offers evening appointments.

“It was a huge step to leave the comfort of a job in the NHS, and have to deal with overheads,” she admits.

Yet she urges other people with disabilities to take the self-employment route.

“If you’ve got a dream I firmly believe that you can achieve it.”

According to Statistics Canada, back problems are among the most common chronic conditions in Canada. Four out of five adults will experience at least one episode of back pain at some time in their lives. The cause of back pain, however, is not always apparent. In fact, in approximately 85 to 90 per cent of individuals with back pain, no specific cause can be identified. Contributing factors include poor muscle tone, especially in the back and abdominal muscles, sedentary lifestyle, obesity, smoking, poor posture, and in particular, improper or heavy lifting.

You cannot build a house without a strong foundation, and you cannot build a strong body without a strong spine. If you have a bad back and you are not getting relief through other forms of treatment, my professional suggestion would be to start an exercise program called Pilates. The Pilates Method is a physical fitness system developed in the early 20th century by Joseph Pilates in Germany. Pilates called his method Contrology, because he believed that his method uses the mind to control the muscles. The program focuses on the core postural muscles which help keep the body balanced and which are essential to providing support for the spine. In particular, Pilates exercises teach awareness of breath and alignment of the spine, and aim to strengthen the deep torso muscles. Pilates is a very beginner-friendly fitness method. With the help of a teacher, clients perform strength, flexibility and range of motion exercises on specially designed equipment and/or mat classes. Class prices range from $12.00 per class to $60.00 per class for private instruction.

With over 15 years of experience in personal training and 10 years specializing in Pilates, I have seen countless clients with chronic back pain. With patience, persistence and the right teacher, I have also seen countless clients regain their life back through the practice of Pilates.

For more information, please contact Michelle Barker at pilates@telus.net or The Gym on Bowen. Michelle is a recent resident on Bowen Island and she loves it!

Identical twin brothers have made medical history, after one gave the other a piece of his back.


Scott Mills needs metal rods put in his spine to help him breathe more easily Photo: Archant
Luke Mills, 19, underwent the procedure because his brother Scott suffers from severe scoliosis or curvature of the spine.
Scott, from Mutford, Suffolk, needs metal rods put in his spine in an operation that will help him breathe more easily, stop his spine collapsing, and in the long term, save his life.
After a number of operations, however, Scott's back was so scarred and thin that surgeons would not have been able to sew him up again.
Last month Luke donated a 10in by 6in flap - a piece of skin, fat and muscle with a vein and artery - from his back.
Surgeons at the Norfolk and Norwich University Hospital removed the flesh before colleagues grafted it on to Scott's back in an adjoining theatre.
It is the first time the operation has ever been carried out on identical twins.
Elaine Sassoon, consultant plastic surgeon at the hospital, said: "I had sleepless nights. It was worse than a standard operation because you are operating on a healthy person who doesn't need surgery.
"If I had taken the flap from him and failed it would have been terrible."
Scott, who plans to study accountancy at the University of East Anglia, has had scoliosis since he was a baby.
He said: "I think we are closer than brothers because we are at the same stage of life. We were already close anyway so we knew we would do anything we could to help each other."
He added: "It was really nice of him to say he would do it. There is a lot more pain involved for the donor than the recipient."
Luke, who is studying French at the British Institute in Paris, said: "He was more worried about me than he was about himself, after all he had been through."
Scott's next operation is in October, when he will have the metal rods put back in his spine.

Peering Eyes Watching

When I sit quietly, and think over my life, as a rebel, advocate, and activist with a cause, I remember certain residue of the most frustrating aspect of dealing with my own disability. These remains have been the left over hurt and pain that were caused by the “attention of self styled experts” and people who wanted and had to have control at all cost.
Having been brought up to believe in the truth and goodness in man kind, I was won over, persuaded, and convinced by these so called experts, in the disabled community. These experts exercised restrained management to try and run other peoples lives, and have complete control and say so over our destination, despite what I truly believed was right for me, in my heart.
These experts tried on numerous occasions to impose their authority, their supremacy, and their power in many areas of my life. I personally had to struggle and fight back with everything I had, to ward off their arrogance in obtaining my education as well as in employment. Sometimes, I simply was not taken seriously or sincerely by both experts and those I worked with. My word was not regarded or deemed worthy.
For example, I was falsely labeled mentally retarded on three separate occasions. This was designed to force me to except what one particular expert wanted me to limit my life to. He believed himself to know “all” about what he felt I shouldn’t be allowed to do with “my” life. His opinions were designed around a very old fashioned, out-moded, and passé, concept of what we, with hidden learning disabilities, were supposed to theoretically do. We were sentenced to live life in a workshop setting. We were beaten and battered down to believe that, that was all we were able to handle and receive out of life.
What was even more frustrating was that this gentleman could not work himself without having an interpreter by his side. Who was he to tell me what my dreams and goals aught to be, or how I should direct my live. And, how dear he tell me where my interest lie!
So, the very person who should have been the most supportive, helpful, and kind to me, turned out to be the greatest obstacle of all. One situation at a time he impeded, held me back, and obstructed my future academic progress. It was not
only very irritating, infuriating, and exasperating to have to waste time being evaluated and judged severely, but it limited my future work.
This arrogant, haughty, disturbing attitude was shared by others too! Some of then where people I worked with. You would think it would be different. But this was not the case- as I found out this attitude was everywhere! They assumed that simply because they did not have a visible disability they had every right to make fun of me, belittle me, and minimize my contribution to myself, my life, others, and the world.
Some people refused to allow me to work as I chose and saw fit. They did not wish me to be an equal and productive person in society. These professionals found every way possible to discredit my abilities, my talents, and my aptitude of skills. I had to personally find clever and survival oriented techniques to persuade not only the experts, but those clients I worked with to make an effort to follow instructions.
These struggles resulted from the same attitude which doesn’t grasp our full potential and abilities. I think the greatest thing we can do as a community is to be committed to one another, help in any way we can, and have an active directed life-style. We must retain the right to express our own vision to the world in our own creative, original, genuine way. It is also very vital that we as disabled people are supportive of our own community, and all their dreams, wants, and desires.
Because of my situation, I have been thoroughly committed to giving back all of what I never received from these “helpful” counselors. In every jagged, angle of my journey, I have sought to be a voice when there was no voice for the unheard among us. All of us, in our own special way, ought to find it within the depths of our beings, to give unconditionally, unreservedly, and completely to our total cause. It will harm and hamper many if given with half-measures or haphazardly.
It is truly annoying to think of how much time we all must spend getting around a system that does not work. It wouldn’t bother me so much if I didn’t see stubbornness so many show. The issue is no longer what is best for our own goals, but rather, how to impose the expert’s viewpoint and will upon us. We have the right as children of God, and citizens of a free country, to run our own lives. That must include the right to make mistakes, and learn from them. Our “friendly” experts think they are giving us a better life, but it is too often a comfortable slavery. They do not see with our eyes, and feel with our hearts, nor do they talk the same language as we. Like Sara in “children of a lesser God,” we must retain our will. That may be disconcerting to the normal community, but it is preferable to a life-time spent waiting to be told what to do, or fighting a system that just does not work.