26 June 2009

Talkative teen finds her voice - and there’s no stopping her!

A TEENAGE disabled girl has finally been able to tell her mum she loves her after being given a voice.

It’s changed her life massively, people won’t realise how much - mum Joanne, above with Jodie, 16, on the machine enabling her daughter to speak for the first time

Jodie Griffiths, 16, suffers from cerebral palsy and has always struggled to express herself.

But now, thanks to a £10,000 communications aid, she can finally tell the world how she feels - and release her wicked sense of humour.

Jodie, who lives in Grasmere Road, Redcar, with her mum, has wasted no time in making the most of the machine. Mum Joanne, 42, said: “One of the first things she said was ‘Mum, I love you.’ It was wonderful. I knew every part of her, just by the way she looked, I’d know how she was feeling. But now she can really communicate. It’s emotional because I didn’t think she would ever be able to say anything like that.”

The communications console, which mum Joanne boasts is better than the one theoretical physicist Stephen Hawking uses, has opened up the world to Jodie.

“It’s changed her life massively, people won’t realise how much,” she said. Simply by using her head to press a switch, she can select a word or phrase, play music or games, watch video, access the internet, and even operate the TV.

Joanne said: “She’s very outgoing, very sociable and has a wicked sense of humour.”
And it’s this cheeky sense of humour that has not only enamoured people to her but on the odd occasion landed her in trouble.

Jodie, who attends Kirkleatham Hall School, said: “I have already been in trouble at school because I kept putting my music on. My friends thought it was funny but my teachers did not.”

Prompted by mum, Jodie also admits that she told a man working at B&Q: “You’re looking very sexy today.”

The money to buy the console came via two different sources.

A panel of young people from the borough awarded Jodie with £7,000 from Redcar and Cleveland Council’s Youth Opportunity Fund.

Joanne said: “They usually don’t give out personalised grants of that amount of money but when the children on the panel heard about Jodie their reaction was, well, if we’ve got a voice then Jodie should have a voice too.”

A fundraising night at Redcar's West Two raised £2,600. Joanne said: “At the beginning, we knew we’d have to raise the money ourselves, then when we got the grant, I just couldn’t believe it.”

Jodie, a Middlesbrough FC season ticket holder, said: “Thanks to the kids on the panel my life has changed so much in such a short time. I can now tell people how I feel and what I want. In fact it’s hard to shut me up.”

25 June 2009

Changing Attitudes, Changing Minds!

In my last article, I wrote about people bullying others. Well today, my dear readers, I am going to take this topic a step further. I am going to expand and give more detail about how this thinking applies in other parts of our lives. The hardest part of our existences; whether disabled or not, is learning to get along with everybody. It is in the learning to maneuver, in staying neutral, and the ability to adapt, and adjust, that we find our greatest challenges and joys. Many in our community must be very smart in finding a way to alter outworn concepts about what we are capable of. When a person has to spends three and a half decades trying to make the degree they won pay off, in terms of the job they deserve without much luck, something is defiantly and undeniably wrong. Still, when doctorial candidates’ will travel the world wide, prove they are capable of making and taking the journey, and come home only to be told by a group of experts that they are better off in a workshop; something unmistakably is wrong. Why is it that when a person such as myself wants to achieve and go forth with their degrees or desires they are subtly blocked and artfully discredited. What is it that has damaged the thinking of our countries leadership? I can not understand why genuine leaders are ignored while people get degrees in phone sex, and jobs based on a false concept of sympathy rather on ability. What makes our drive unnoticed? What make our situation so different. And what makes people so reluctant to help us and hire us? That is the hardest thing to deal with, the awareness that we are tolerated not included. And we come off to these experts as “non included, separated; after thoughts.” Thus, the people in our community are an untapped resource. All of our problem solving, all of our flexibility, and all of our talents are going to sheer waste. Decade, after decade, after decade!
Never in the United States history, has our country been in grater need of a group of individuals, skilled in problem-solving, time management, flexibility, and a strong will. Never in its history have they looked beyond book documentation to free and let our people have the chances, the opportunities, and the favorable time or set circumstance to do a job they so deserve. Every one of you reading this article has accomplished many great challenges, I’m sure. We are conquering everyday problems which the rest of the world, I’m sure, couldn’t handle. If faced with our level of difficulty, most people would collapse at the onset. So, I ask you, what would be then, so terrible, awful, or extremely bad, about turning us all loose to over-come and take control of our own lives and problems. Thus, I ask you again, candidly, What would be so dreadful if we were finally given a change. What would be so horrific if we were able to sit down at the table, equally, amongst our peers, and leaders? What would be so shocking, if all of us; not just the select few of our excepted leaders, in our community, could actively influence policy. What would be so earth-shattering if people were willing to analyze and inculcate our views about the contribution we are making to society.
How could this be possible? It is definitely simpler than it looks. We only have to abandon the comfortable idea that experts will make all our decisions and supply all our wants. I ask you , again. What is wrong with that picture? The frame does not fit, nor, is the color correct. So, we must make a new picture. We must take back the right to determine our own path.

What Does Bullying and Making Fun of Other’s; Got to Do With it?

I have heard a lot of commentary about kids bullying others, and then those same children who could not handle the making fun of any longer; killing themselves or hurting someone. Many people do not know how much that actually happens in the disabled community. But it does. Sometimes its even worse than out in the “regular world.” I know this because I lived through it, and experienced it a number of times first hand.
When I was a child the kids around me would chastise me for having an over-weight parent. Time and again, they would say mean and cruel words that stung deeply; of which all I could do was swallow what they just said, and turn the other cheek. Still another time, I was directly bullied by the classmate’s in my classroom. I was a quiet, demure, good-hearted child, who never thought twice about saying something or doing something down right nasty just for the sake or fun of it.
Yet, I had classmate’s that did just that! I experienced a practical awareness of people who came up to my personhood, stared me in the face, spouted nasty, sweet, nothings to me directly, grab my work assignments right from under my very nose, and ripped then to shreds. Still another time, as an adult mind you; while teaching a young client who had C.P., I was directly ostracize because she felt she had a right to mock my movements. Obviously, someone put this in her mind. Where did she get this from. Was it her wealthy background, her being the eldest child, or her controlling, manipulative ways. Was she made fun of by others, herself? Or, did she believe that making fun would get her somewhere?
What she did not realize was she was also making fun of herself. With a stern, caring, compassionate, human side, I professionally sat her down; and reminded her that she too had a disability, and while it was the same, yet different, she would not like it if someone made fun of her. People are not aware of how much there words can impact people around them. It would be very useful if we all took the time to think before we hurt someone’s feeling. If we perhaps, really took the time to be careful there would be a whole lot less suffering and tragedy.

Complexities of Human Nature

Recently, I have been subjected and exposed to spending time with a specific group of people whom, I’d really rather not keep company with at all. But, because I had no other choice; and, because I do my emotional home work to look beyond all past experiences, I did my utmost to make good out of an on-going, negative, one sided, opinionated event, so I agreed.
However, in spite of all my hard work, and my good-naturedness, I was conversely made to be the enemy. I was conversely used and taken advantage of solely so my company could achieve their means to there end. Once again, these experiences have taught me another life altering lesson. Whether they have been immediate family, or sheer acquaintances, I have learned once again that there aren’t two people in this vast universe who see things exactly alike.
There is a much larger, grander issue here. This issue concerns a comfort level of ordinary people with those with disabilities, stepping out into full and self-directed participation in life. This issue is not something everyone is use to. This concern is at its root, a fear of having to approach events with honesty and directness. The facts of our lives require a forthrightness most of society has abandoned. Most of the world conducts itself with comfortable, passive, banality. People would rather not be reminded that the world is more complex than they would like to believe.
Thankfully, our achievements have broken down the old out-moted views which seemed to be comfortable for most. In everything we say and do, we are forcing the world to understand that disability does not mean isolation in comfortable seclusion. Nor, does it mean, to directly hurt someone in pursuit of a goal. Rather, we are stretching body, mind, and spirit towards our place in the sunshine.

Physical therapist explains machine that helps patients walk

Jun 22, 2009 (Lodi News-Sentinel - McClatchy-Tribune Information Services via COMTEX) --

Lodi Memorial Hospital is the only place in the greater Sacramento and Modesto areas that has a new piece of equipment available to patients seeking to improve their ability to walk normally again.

This includes those who have suffered from a stroke, an incomplete spinal cord injury, cerebral palsy or, like Linda Barnard, of Sacramento, multiple sclerosis.
After being diagnosed with multiple sclerosis 10 years ago, Barnard was steadily losing her ability to walk. The disease worsened until the former athlete struggled to walk independently from her office to a nearby restroom at work.
Barnard, a marriage-family therapist in the Sacramento area, learned about the machine through one of her clients, who saw a segment on the "Today" show. When she Googled the nearest location, she found it in Lodi.

In the last six months, Barnard has regained enough mobility to stroll around a golf course. The 59-year-old attributes her full recovery to the NESS L300, a new FDA-approved wireless electronic device.

"It really works. I can already see positive benefits," she said.
The NESS L300 is worn in two parts, a small transmitter in the shoe and a device strapped below the knee. When a patient tries to walk, the L300 sends electronic signals to stimulate the peroneal nerve which, in turn, signals under-active muscles to help patients lift their foot off the ground and get them walking again.
Barnard's physical therapist, Jason Locke, at the hospital's outpatient clinic, explained how the NESS L300 can help people learn to walk again.

How does this machine work?Basically how the machine works is, we use a cuff that goes on the lower leg, which we connect electrodes to that stimulate the muscles of the foot.

A gait sensor in the shoe acts as a switch. When the person is walking, the machine will sense the pressure and turn the machine off ... so there's no contraction of the muscle. When your foot is on the ground, you don't need that muscle.
When you lift your foot, that sensor turns the machine on.
When it comes to physical therapy, what is 'foot drop'?It's just a general term for the foot not to be able to come up for walking.

For Linda, who has MS, it's a central nervous system disorder. If you compare it to an electrical generator for our home, it sends power to turn on the lights. Our brain is very similar. It sends a message through our brain to our muscles.
How is this machine unique to others that offer similar results?We've been using electrical stimulation for a long time. (The NESS L300) is just the wireless technology that enables us to make a big impact for patients.
It's more functional for them because the physical therapist doesn't have to program anything. In the past, we would have to get the electrodes in the right place every time to stimulate the muscles.

I understand there are not many of these machines around. How did Lodi Memorial come to acquire one?We heard about the technology about a year-and-a-half ago, and we were able to acquire it by a generous donation by the hospital and the auxiliary.
They are very expensive. A take-home unit is about $6,000 and doesn't include all the auxiliary equipment we need here, including a PDA that stores all of the patient information.

How have you come to believe it can help people regain mobility?I think the biggest thing is that it provides some functional return. It makes people more functional again.

Most of these people who have foot drop are using some sort of brace. It's cumbersome and not natural at all. This unit has created a functional way to improve their lives. Lots of people walk faster, their gait improves and they can walk on uneven ground a little better, especially stepping over hills.

It also reduces tone (in the leg). It's like the idling speed in your car. The patient who has had some sort of brain injury, their tone usually runs too high in the legs. It's just more rigid, and it's hard to move. This machine allows people to move a little better.

What have patients who have used the machine said about it?I had one patient who wasn't able to walk very well because of fatigue. This machine has enabled her to walk further.

A year-and-a-half ago she was able to walk around Disneyland when she was only able to walk from bench to bench before, because she would lose her balance or fatigue.
It's been amazing to see people who have had a life change and how this has positively affected their lives. We've had some patients come from Nevada, and one from as far away as Bakersfield.

Free patient screeningWhen: Wednesday from noon to 4 p.m.
For more information: 333-3136.

24 June 2009

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21 June 2009

Today as been one of those days

Today as been one of them days, it started out good, but ended.. Well, lets just say.. it ended..

20 June 2009

Identifying Neurologic Disorders

A new study provides a novel theory for how delusions arise and why they persist (Devinsky O. Delusional misidentifications and duplications: right brain lesions, left brain delusions. Neurology. Jan 2009;72:80-87). Orrin Devinsky, MD, a researcher at the New York University (NYU) Langone Medical Center, performed an in-depth analysis of patients with certain delusions and brain disorders and observed a consistent pattern of injury to the frontal lobe and right hemisphere of the brain.

The cognitive deficits caused by injuries to the right hemisphere lead to overcompensation by the left hemisphere, which results in delusions.

"Problems caused by these brain injuries include impairment in monitoring of self, awareness of errors, and incorrectly identifying what is familiar and what is a work of fiction," says Devinsky, professor of neurology, psychiatry and neurosurgery and director of the NYU Epilepsy Center. "However, delusions result from the loss of these functions, as well as the overactivation of the left hemisphere and its language structures, that 'create a story', a story which cannot be edited and modified to account for reality. Delusions result from right hemisphere lesions, but it is the left hemisphere that is deluded."

Delusions are pathologic beliefs that remain fixed, despite clear evidence that they're incorrect. "Delusions are common problems in a variety of psychiatric and neurological disorders," says Devinsky. Psychiatric disorders with delusions, such as schizophrenia, have been proven to have functional and structural brain pathology, he adds. But now, improved diagnostic techniques are allowing clinicians to be able to identify neurologic disorders among other patient populations with delusions.

In the study, most neurologic patients with delusions had lesions in the right hemisphere and bifrontal areas. For example, the neurologic disorders of confabulation, capgras and prosopagnosia result from right-sided lesions. Confabulation is incorrect or distorted statements that are made without conscious effort to deceive; capgras is the ability to consciously recognize familiar faces, but not emotionally connect with them; and with prosopagnosia, patients may fail to recognize spouses or their own face but generate an unconscious response to familiar faces.

The right hemisphere of the brain dominates self-recognition, emotional familiarity and ego boundaries. After injury, the left hemisphere tends to have a creative narrator that leads to excessive, false explanations. The resistance of delusions to change, despite clear evidence that they are wrong, likely reflects frontal dysfunction of the brain. This dysfunction impairs a person's ability to monitor himself and to recognize and correct inaccurate memories and familiarity assessments. Thus, right hemisphere lesions may cause delusions by disrupting the relationship between and the monitoring of psychic, emotional and physical self to people, places and body parts.

"Our knowledge of delusions is limited by our ability to comprehend the patient's irrational thought process," says Devinsky. "The pathogenesis of delusions likely includes many mechanisms that span overlapping psychological, cognitive and neurological disorders. Future research should explore the psychological, cognitive and pyschologic-anatomic systems that change during the emergence and resolution of delusions, as well as strategies to treat delusions."

Other studies have looked at delusions related to brain injuries. In one study, nine patients with right-hemisphere infarctions at a stroke rehabilitation unit had frequent delusion. While stroke size didn't correlate when compared with the control group, the presence of brain atrophy was a significant predictor of delusions. When delusions occurred, it was usually caused by a right-hemisphere lesion.

Other research has shown that reduplicative paramnesia and capgras syndrome cases with unilateral brain lesions implicate the right hemisphere, usually the frontal lobe of the brain. Among 69 patients with reduplicative paramnesia, lesions were primarily in the right hemisphere in 36 cases (52%), bilateral in 28 (41%) and left hemisphere in 5 (7%). Also, in 26 capras patients, lesions were primarily in the right hemisphere in 8 (32%), bilateral in 16 (62%) and left sided in 2 (7%). For both delusional syndromes, many bilaterial cases had maximal damage in the right hemisphere.

--Source: NYU Langone Medical Center

Dolphin-assisted therapy offers hope to disabled children, parents


WILLEMSTAD, Curacao -- A 350-pound dolphin named Matteo tickles a toddler with his snout, sparking a burst of giggles.
The disabled child hitches a ride on Matteo's belly while gleeful parents snap photos. The dolphin expels water through its blowhole and rests its head gently on the girl's shoulder while her parents silently plead for results.

It's a scene Kirsten ''Kiki'' Kuhnert has watched thousands of times. She used to be one of those moms who prayed for miracles at the side of a dolphin therapy center pool, thinking: Maybe this will make my child talk. Maybe some day he'll walk.

''I have seen kids speak their first word, mothers cry because their autistic son looked at her in the eye or kissed her,'' Kuhnert said. ``Every day a little miracle.

``How big a miracle is in the eye of the beholder.''

Kuhnert, a single mom from Key Biscayne, has dedicated the past 15 years of her life to raising funds for dolphin-assisted therapy, a controversial behavior-modification treatment for severely disabled children. Struck by tragedy as a young mother of a 2-year-old, the Germany native turned her heartbreak into a calling.

Convinced that swimming with the animals paired with intensive speech or physical therapy helps with autism, Down's syndrome, cerebral palsy and other debilitating ailments, Kuhnert spends her days snapping orders at therapists and trouble-shooting emergencies at a therapy center at the Seaquarium in Willemstad, Curacao. She makes phone call after phone call raising money to get children to treatment, at $7,000 or more for just two weeks of care.

But, these days, she is hardly ever by the pool, rarely with the children. The memories of the son she lost sting too much.


It was June 18, 1994. Kuhnert was the married mother of two kids from an upper-class family in Germany who made her living in sports event marketing.

That June day, the family had gathered at the country club to celebrate her infant daughter Kira's christening, when suddenly they realized they had lost sight of Tim, Kuhnert's 2-year-old.

''We looked for 15 minutes,'' she remembers. ``He was 15 yards away behind a hedge, in an unsecured swimming pool. This is where they found him. He was lifeless.''

Tim suffered brain damage that left him in a coma and with cerebral palsy. Kuhnert became obsessed, she says -- the type of mom who would ''fly to a rain forest and dance'' to make their kids well.

She traveled to hospitals around the globe, fought with neurologists, lost her marriage.

In 1995, Kuhnert flew from Germany to the Keys, where her little boy swam with dolphins at a facility that has since closed. After four days of being put in the water with a dolphin -- following 16 months in a coma -- Tim woke up.

''I was so happy. I thought every kid that has a problem should be able to do this,'' she said. 'I thought, `Somebody should set up something like a foundation.' ''

That's what Kuhnert did.

''She was so excited about it, she started kind of a crusade to help kids come,'' said David Nathanson, a South Dade psychologist who is considered the founder of dolphin-assisted therapy. ``She's very dedicated and passionate. I would call her semi-eccentric -- in a good way.''

Nathanson ran a company called Dolphin Human Therapy in a variety of locations from Miami Seaquarium to Key Largo and Mexico from 1995 until 2006. In that time, he said, Kuhnert held raffles, organized dinners and made countless calls to send at least 1,000 children to therapy. She'd get airlines to donate tickets and corporations to write checks.


Kuhnert was so dedicated that 10 years ago she packed up and moved to South Florida, so her son could be closer to the dolphins she credits for bringing him out of a coma.

Tim remained severely disabled for the rest of his life, communicating by the roll of an eye. He died suddenly last year at 17.

''He was the funniest, most charming person in the world,'' his mother said. ``He was an angel the day he was born.''

Despite her loss, Kuhnert continues on her quest to find funding for other families to visit the Curacao center.

Her dedication will be honored Thursday when she is presented with an award of excellence by the German American Business Chamber of Florida at the InterContintenal Hotel in Miami.

Kuhnert helped create the program at the Curacao Dolphin Therapy & Research Center, an interdisciplinary treatment center on the grounds of the Sea Aquarium in Willemstad.

The owner pays her a consulting fee to supervise speech and physical therapists and she uses the rest of her time to raise money for her charity, Dolphin Aid, which provides grants for people, largely Europeans, to come. ''She is an inspiring, very driven individual,'' said owner Adriaan ''Dutch'' Schrier. ``I am a son of a Presbyterian Dutch farmer -- I don't believe in hocus pocus or so-called miracles. But what I've witnessed here . . . ''

Among the perceived miracles is the case of Daniuq Kuypers, a 12-year-old who did not speak until after swimming with dolphins in Curacao at the age of 10.

''The only thing I can tell you is that I came here with a daughter who did not speak and flew back to Holland, and she spoke,'' said Daniuq's father, Hans Kuypers, a Dutch homicide detective. ``For 10 years, I had no contact with my daughter. Now she can say why she wants to cry or has pain.

``I can't be sure if it was the dolphin that caused it, and I don't care.''

Kuhnert admits she's not exactly a trained expert.

''I didn't know what I was doing. I was just a mom trying to do the right thing,'' she said. ``I am not a nurse nor a therapist. I was just a mom.''

The therapy has been the target of criticism largely from animal rights groups, which consider it dangerous to humans and unfair to dolphins.

''Because of the lack of scientific study, there are two vulnerable groups being exploited: dolphins and children and parents seeking a miracle under expensive circumstances,'' said Courtney Vail, director of the Caribbean program for the Whale and Dolphin Conservation Society. ``There is such an affinity for these animals, it's easy to believe. But if you are going to claim it has a medical benefit, you have to validate it.''


Janelle Nimer, a Ph.D. candidate at the University of Tennessee who researched dolphin therapy for her three-year fellowship in veterinary medicine, says experts are not sure why the therapy shows results, but they believe it could have to do with the sonar the animals emit under water.

She tried it herself in Mexico and felt a ''high-like'' feeling for two weeks. The research, Nimer said, shows children show improvements compared to traditional therapy alone.

''All animal therapy is controversial, because it hasn't been researched as it should have been,'' she said. ``People are afraid dolphins are being mistreated. You have exotic animals and parents of autistic kids who are willing to try anything.''

Those who support the therapy say one only needs to see the benefits to believe.

''Therapy without the dolphin does not work. The dolphin without the therapy does not work,'' said Marco Stork, an Amsterdam newspaper ad salesman with two autistic sons. ``They work together.''

His son Damian, 8, had been in speech therapy for three years, and only started speaking after that work was combined with two weeks of two-hour-a-day swims with dolphins.

''His first word was spelen -- play,'' said Stork, who speaks Dutch. ``Something he could never have said, he said after three days here. Every day we saw a little bit more, a little more.''

Frank set to soar above his disability

By St Helens Star newsdesk »

FRANK Lees might have cerebral palsy... but that won’t stop the 20-year-old reaching for the sky later this year.

Frank, pictured right, from Prescot, enjoyed a three-day selection course at RAF Cranwell and has been given the chance to learn to fly through the charity Flying Scholarships for the Disabled.

Born prematurely, Frank now suffers from both cerebral palsy and hemiplegia, which limits his mobility.

He will be undertaking a residential four-week flight training course at Lasham Airfield, Hampshire, with the British Disabled Flying Association.

The scholarship includes all flight training and associated ground school tuition, as well as his accommodation.

The aim of FSD is to help disabled recipients restore confidence and regain self-esteem through the physical and mental challenge of learning to fly a light aircraft. The thrill and freedom of flying enables them to reach previously undiscovered potential and helps view their lives in terms of their abilities, not their disabilities.

For many past scholars, the new-found confidence that FSD has instilled in them has helped them to resume or start new careers.

The charity is financed through sponsors, charitable trusts, public donations and local fundraising.

Additional information on the FSD charity can be found on the website at toreachforthesky.org.uk Since 1983 nearly 300 disabled people have experience the thrill and freedom of flight through the scheme.

17 June 2009

Nintendo Wii Could Help Doctors Prep for Surgery

By Charles Q. Choi

The popular Nintendo Wii console offers video games that venture into the world of exercise, but scientists now are taking it further, to help doctors heal the body.

The key behind the Wii is its motion-sensitive wireless controller, the Wii Remote, or the "Wiimote," with which players control actions on screen. Players can swing the controller to simulate countless realistic motions, such as swatting a baseball for a home run. Such technology is becoming increasingly popular — at this year's Electronic Entertainment Expo (E3), Sony and Microsoft both revealed motion-sensitive game controllers.

Playing with the Wii could help surgeons in training improve their fine motor skills and performance in a surgical simulator. Eight trainees were asked to play the Wii for an hour before performing virtual laparoscopic surgery with a tool that simulates a patient's body and tracks the surgeon's movements as he or she operates.

The Wii-playing residents scored 48 percent higher than others without the warm-up with the Wii, working faster and more accurately.

Although the researchers first relied on off-the-shelf Wii games, they will soon release a complete surgical training system they designed for the Wii, where trainees can practice suturing and other procedures.

"There's really no accurate way to train surgeons in the operating room, so it's virtually all the on-the-job training, which is very time-inefficient," explained researcher Mark Smith, an endoscopic surgeon at Banner Good Samaritan Medical Center in Arizona. "There are surgery simulators out there, but these are still very expensive. With the Wii, we have a very easy and inexpensive platform where surgery residents can learn and develop their skills."

"You can even have the surgeons train at home," added researcher Kanav Kahol, a biomedical informatician at Arizona State University. Although the Wii could help surgeons train in virtually any surgical specialty, the researchers are especially interested in using the console to teach robotic surgery, where surgeons can use robots for precise, minimally invasive procedures or to help patients at remote locations.

The Wii is also helping patients with Parkinson's disease gain or maintain their independence with physical activities. Occupational therapists at Medical College of Georgia are using the console with patients to help them exercise.

"One of the therapists uses the Wii for timing and loosening up, and the other uses it for coordination and balance issues," said researcher Ben Herz. "These therapists are thinking way out of the box. They're doing activities that will make a difference in these participants' lives based on what we know about Parkinson's."

Doctors at NewYork-Presbyterian Hospital/Weill Cornell Medical Center are using the Wii to help scan through an ever-increasing workload of patient X-ray and MRI images.

Instead of spending hours at a time navigating through pictures using basic keyboard and mouse clicks, which can lead to repetitive motion injuries such as carpal tunnel syndrome, one cycles through scans with the Wii by just rotating the wrist.

"The remote is very intuitive," explained George Shih, a radiologist at Weill Cornell Medical College, who with his colleagues helped develop the system that links the Wii remote to the diagnostic computer.

At Weill, "Wii-habilitation" therapists are using the console to help patients with burn injuries. For such patients, moving and stretching the skin is very painful, but crucial for a successful recovery.

"If a burn injury is near joints, the healing process makes the skin tight, so the natural tendency is not to move normally," said Roger Yurt, chief of burn surgery at NewYork-Presbyterian Hospital/Weill Cornell Medical Center. "However, if the patients don't, the joint itself starts to get stiff, so right from the beginning after a significant burn injury, patients have to start doing physical therapy."

The researchers have found that Wii games not only help the burn patients exercise as they need to, but "get their mind off their disease, accomplish the objectives of the therapy without being routine and boring and monotonous," said researcher and physical therapist Sam Yohannan at NewYork-Presbyterian Hospital/Weill Cornell Medical Center.

"If they're in for multiple surgeries, for an extended period of time, it gives them a little bit of escape, doing some sort of sport with scenery that's typically outdoors," Yohannan added. "And it also improves socialization, and that's a big part of burn rehabilitation and therapy, to get social support."

Such research, or "Wii-search" as Yohannan said he sometimes calls it, "is very cutting edge, and there will be a lot more in the future, to see why and how games can better improve the health of patients. It's a great and inexpensive technology."

Boycott on Alzheimers care

People suffering from dementia are receiving poor quality care because large numbers of staff are badly trained or quit because of their low pay and status, the All-Party Parliamentary Group on Dementia found.

Watch here

16 June 2009

Miracles Sudan is a special place.

Hi everyone, my name is Jane-anne. I run a hippotherapy program in Sudan. I also have a disabled daughter (Fatima 18yrs) who has Charge Syndrome. I am very excited to have the honour of writing for this blog. I hope my posts will be informative.
If you wish to learn more about my work please visit http://www.miraclessudanhomepage.blogspot.com

Due to its special atmosphere, Miracles Sudan riding centre is a exciting and stimulating environment for children to attain their therapy (hippotherapy) and for parents to overcome their taboos. (Parents of handicapped children in Sudan often hide their children away afraid of what society would think of them).

The horses used for this type of therapy need to have a good, calm temperament and be very well trained. Horses at Miracles Sudan riding centre have both qualities enabling children and their assistants to perform all sorts of exercises safely. More over, children are conquered by the kindness of these large animals which builds their confidence and thus increases their interaction.

Miracles Sudan’s special feature is to be a home for abandoned horses in particular, but once visited it appears clearly that it is a home for all living beings. This is a real miracle in Sudan and that is what gives it this name. Probably, this is also why this special experience is working out so well. Somehow, there is a strong bond between those rescued horses and these children as they both have been challenged to get a dignified life finding their way through this farm.

Hippotherapy in Sudan

A large number of children in Sudan, mostly with a Neurological developmental condition face the challenge of living within their own space, while the world outside doesn’t seem prepared to adjust according to their needs. Hence the challenge to help them face their environments only manages to add an atom of progressive development in their lives. Out of the many, one of most common and fast growing disability condition is Cerebral Palsy. This neurological condition is one of the most causative disabilities in the 21st century. Even more active in growing numbers in Africa and other under developed countries, due to poverty and illiteracy. Its has been estimated that Three children out of 1000 present with this condition in the world, while in Africa the prevalence is higher with 5 children every 1000. With regard to Sudan, there are no official statistics yet. However, at Khartoum Cheshire Home (KCH) - which is one of the few organisations that caters for the needs of children with this condition – only in the last year the number of children with Cerebral palsy registered has increased by 62%. This disability occurs due to poor prenatal, natal and post-natal care in pregnant mothers and infants. Once Cerebral Palsy has been inflicted upon a child treating the condition it self is redundant. Hence teaching parents and children how to manage with the given condition is the focus of attention.

15 June 2009

Spent day in hospital

Wow what a mad couple of weeks it has been, as you may have read I have been waiting for my MRI results, well I finally got them at the end of May. It turns out that I am not quite ready for the surgery just yet, and as a result my Consultant wanted to try the conservative routine to start with, to try and reduce my pain. It was agreed that I would undergo a sacral epidural in the theatre. After some discussion I left the clinic and came home to wait for the admission letter. I thought oh well at least this gives me time as I will have to wait a while no doubt. How wrong was I, I saw him on the Friday evening and I got a call on the Monday to say there has been a cancellation, and could I get to the hospital on Wednesday and be on the Trauma Ward for 7.30am.
Well 7.30 came and I made my way to James Cook Hospital, it felt odd getting there at that time of the morning, or was it the middle of the night lol. I arrived on the ward and waited in the reception, only to be told ½ hour later we don’t have a bed for you, and they where going to have to find one on the opposite ward, great not!!! I thought I’m in for a long day. The sister finally came and admitted me and then it seemed chaos from then, we had to complete loads of paperwork and then go straight down to the theatre which I did in my powerchair. It felt like playing monopoly pass go and collect £200 pounds.
I finally reached the ward with the nurse and was aloud to get out of my chair and get onto the bed, the room had the air conditioning on and it was really cold I have to say, I don’t cope well with cold, anyway I was wheeled into the aesthetic room while the theatre was getting prepared, it was like the red carpet was getting rolled out.
Into the theatre I went, it was an odd feeling because I have always been asleep when I get into the theatre and this time I was wide awake, WOW they big rooms aren’t they, I see them all the time on the TV but didn’t think it was going to be like that.
I have to say I found the sacral epidural very painful even though I was given a local first and my consultant bless him was as gentle as he could be and the staff where amazing with me, I think I had panicked them somewhat including myself for that matter because I had gone into spasm, and I have not had one for 5 years now. Although it felt a lifetime, the procedure only took 30 mins and I was wheeled to the recovery room with my head lowered, that was so that the drugs could take effect.
After a while I was taken from the recovery and wheeled to the surgical day unit, where I stayed for 4 hours, to give me time to pull round and the staff again was great and looked after me with tea and toast.
I was allowed home late afternoon and boy was I glad to be back it had been a long day and I got in my comfy chair and slept for a few hours. I have been off work for just over week now because I am still finding it painful to sit for long periods and still have periods of pins and needles. I am hoping that this will settle really soon, in fact yesterday (14th June) I managed to walk a little bit which is something that I have not really done since last October, so it shows that the drugs might be starting to work!!!!

14 June 2009

Minister Harney Welcomes Consultation Programme On The National Rehabilitation Hospital, Ireland

Harney TD, Minister for Health and Children yesterday, 20th May, 2008, welcomed the major consultation programme being undertaken by the National Rehabilitation Hospital which is taking place today, Tuesday, 20th May, 2008. The Minister said "I believe that it will give the hospital an excellent opportunity to obtain the views of key stakeholders and will help to deliver the best possible facility for patients" The consultation programme is part of the planning process for the redevelopment of the National Rehabilitation Hospital (NRH) which was committed to in the Programme for Government. When completed, the new NRH will provide additional treatment and diagnostic capacity. The consultation day is being held in the Rochestown Lodge Hotel in Dun Laoghaire and participants will include members of the Hospital's staff, local public representatives as well as the general public."This is an important step in the planning of the new National Rehabilitation Hospital and I would encourage all those with views on the redevelopment to participate in the consultation process" concluded Minister Harney. Department of Health and Children
Article URL: http://www.medicalnewstoday.com/articles/108291.php

Find out more about Power Pumper

The Power Pumper is Revolutionizing Physical Therapy

Revolutionary Mobility Device Finds Success With Children And Therapists...What is the secret behind motivating children and encouraging them to participate in their therapy? The secret is the Power Pumper. Therapists have found the Power Pumper to be a major factor in helping children successfully accomplish their therapeutic goals. Children overwhelmingly embrace this new mobility device because they see it as engaging in fun, not therapy. Children are instantly attracted to it because of its "cool" design. Riding the Power Pumper is so enjoyable they do not want to stop. As a mobility device that exercises both upper and lower extremities, it has proven to be effective in increasing muscle strength, endurance, extremity development and motor coordination. These are just a few of the positive results seen in children when implementing the Power Pumper into their therapy sessions. Because it is influential in changing a child's attitude towards therapy, along with the results it produces, therapists using the Power Pumper consider it a "must have" mobility device.

13 June 2009

Whitworth students test horse-riding in treating cerebral palsy

Known as hippotherapy – stemming from the Greek word “hippos” for horse – the treatment uses the multidimensional movements of a horse to treat patients who suffer from muscle or movement dysfunction. It’s said to improve balance, posture, mobility and function.
With his arms outstretched, 6-year-old Tyson Thompson concentrated Sunday on keeping his posture straight and his leg muscles strong as he balanced on the horse moving beneath him.

The boy looked miniature perched on the back of the 1,400-pound horse named April. Maintaining steadiness proved even more difficult without a saddle, especially for Thompson, who has cerebral palsy.

“It makes him very aware of his body positions,” said Ellie Giffin, Thompson’s mother. Riding 18-year-old April – a breed of draft horse known as Shire and related to Clydesdales – is also the only physical therapy Thompson does in which his symptoms don’t regress, Giffin said.

Known as hippotherapy – stemming from the Greek word “hippos” for horse – the treatment uses the multidimensional movements of a horse to treat patients who suffer from muscle or movement dysfunction. It’s said to improve balance, posture, mobility and function.

“They can’t re-create this in a clinic,” Giffin said.

Giffin and her family also are fortunate to be related to Mike and Teri Sardinia. The Sardinias own the Clayton, Wash., farm and the horse used in Thompson’s therapy. The boy has been working with the horses since he was 3 years old.

Mike Sardinia is a biology professor at Whitworth University. Two years ago, two of his former students did their research project for his animal physiology course on the effects of hippotherapy; Thompson served as their test subject. This year, undergraduate biology majors David Ellis and Aly Shaffer, both 22, took the research a step further to determine how long Thompson’s muscles benefited from each session.

The students measured the electromyograms in the boy’s muscles before, and then each day after each therapy session for a week. The electromyogram is a graphic representation of the electrical activity that occurs when muscles contract.

For most people, those muscles are in sync when they are contracting in the limbs. But for people with cerebral palsy, the electromyograms are out of sync for the same muscles, causing patients to be off-balance.

“The idea of being on a horse is that it moves in a very synchronized way; he has to use his muscles in sync with the horse,” Ellis said.

Ellis and Shaffer recently presented their research at the Spokane Intercollegiate Research Conference. Their research determined that Thompson had better muscle coordination and balance for at least two days following his sessions with horses.

Mike Sardinia said he hopes the research will be helpful in establishing more local hippotherapy options. When Giffin went looking for help, there were only two similar programs in the Spokane area, and each had a long waiting list.

In addition, Sardinia said there is much anecdotal evidence to support the benefits of hippotherapy, but very little solid research to prove it works.

“We want to spread this around to anybody that is doing this kind of work,” he said.

Already, the need is growing.

On Saturday, a newly formed group in Spokane called Free Rein held an event to raise money for similar therapy.

Founded last summer, Free Rein allows 22 children and adults with physical, mental and emotional disabilities to ride and connect with horses. The nonprofit wants the program to grow and eventually serve 100 riders a year.

But the therapy is costly, and often patients are living on limited incomes and have higher living expenses because of a disability.

The Sardinias said they have only worked with Thompson so far, but in the future would consider taking on more riders.

Giffin said that without the therapy, her son’s progress would have been slower. He no longer wears leg braces.

“The biggest thing is that he has developed strength in his torso,” Giffin said. “He couldn’t sit before without help.”

Disabled boy bids to make football history

A WHEELCHAIR-BOUND teen-ager is trying to defy overwhelming odds to become Scotland's first disabled football manager.

Craig Carter, 16, has never been able to play because he was born with cerebral palsy. He took up coaching instead and was put in charge of his school's team. Now he is signed up to an official SFA coaching course and hopes one day to lead a professional team.

The teenager, from Aberdeen, said: "I never let my disability get in my way. I don't get frustrated by it and it definitely doesn't control my life."

After talking with teachers at his school, St Machar Academy, he was put in charge of a school team. He leaves school this summer but is refusing to take the route of most disabled people and end up behind a desk in an office.

As well as the SFA course he's also signed up to an HND in sports coaching at his local college.

His mother Jennifer, a nurse, said: "We spoke for a long time about what he was going to do after school and when he came up with this we didn't think for a minute that he couldn't do it."

12 June 2009

Finding the right balance: Providence Healthcare’s new mobility clinic

By Beth Johnson
Radiation treatments for bone cancer at the age of 11 precipitated a condition that resulted in the amputation of Kevin Clancy’s right leg at age 48. Clancy remembers waking up on November 16, 2008 and noticing that his right foot was unusually cold. “Some of the toes had turned blue,” he recalls. “Ever since I had cancer, I’ve had poor circulation in that leg, but nothing like this.”
He was taken to an acute-care hospital the same day, where doctors discovered that only one artery was working. The decision was quickly made to remove the leg above the knee. The surgery was done November 23, and within 10 days, Clancy was transferred to Providence Hospital’s Amputee Rehabilitation program to begin rehab. Providence Hospital is one of the three integrated care divisions within Providence Healthcare in Toronto’s east end that also offers long-term care and community outreach services.

During his two months at Providence, Clancy was fitted with a prosthetic leg, and made a couple of trips home to determine what changes would need to be made to ensure a smooth transition home. Another step taken to ensure a smooth transition home was introducing Clancy to Providence’s newest service, the Mobility Clinic, where he met with his new physical and occupational therapists.

The new Mobility Clinic is designed for outpatients of Providence Hospital with muscular-skeletal impairments. It ‘fills the gap’ that opens once a patient returns home by continuing to support their therapy needs within a safe, professional, and compassionate environment.

There are two ultimate goals for the Clinic. The first is to provide individualized health-care services to improve functional abilities and promote independence. The second, more important goal, is re-integrating clients into their community and giving clients back their confidence and freedom to take charge and manage their own health care and new lifestyles.

“Kevin was confident while at Providence or at home, but there was a lot of fear each time he faced a new, public environment,” explains Clancy’s wife Christie. “For example, we had to go shopping for a light bulb, but Kevin was hesitant. He knew they were stocked at the back of the hardware store. But he did it – he summoned the confidence he needed to walk to the back of the store, find what he was looking for, get back to the car and return home.” A weekend trip to the hardware store is something we take for granted, but a milestone for someone learning to walk again after the sudden loss of a leg.

The Clinic helps people overcome fears by instilling a sense of independence through using innovative rehabilitation equipment and best practices. Physiotherapist Dellene Sakaguchi says, “Strengthening exercises help patients learn how to trust their balance again. We use tools such as a ‘core pole’ for total body conditioning.” The Clinics’s state-of-the-art gymnasium includes a variety of rehabilitation equipment, a mock kitchen and laundry room for training purposes, and a Sony Wii game system to strengthen muscles and enhance dynamic balance skills in a fun way.

“We take the time to learn about what each person’s day-to-day life involves then reintroduce them to these activities, and adapt them however necessary,” explains occupational therapist Lynne Mycyk. Staff introduced and adapted exercises and activities that would help Clancy get back to the things he loves doing, such as golfing, cooking and participating in the drum corps.

Staff members also help clients understand their injuries, their rehabilitation goals, and their achievements. Education fosters understanding; when clients see the ‘big picture’, they develop a belief in what they are doing, thereby increasing their chance of success. Beyond the physical rehabilitation provided, a sense of camaraderie and hope permeates the clinic. Clients of the service encourage each other’s progress and celebrate achievements.

With 347 beds, Providence Hospital is one of the largest rehabilitation hospitals in Ontario, and the Amputee Rehabilitation unit alone discharges up to 80 patients annually. The new Mobility Clinic is Providence’s solution to ensuring a smooth continuum of care on the patient’s journey to recovery.

Beth Johnson is the Director of Communications at Providence Healthcare.

Finding the right balance: Providence Healthcare’s new mobility clinic

By Beth Johnson
Radiation treatments for bone cancer at the age of 11 precipitated a condition that resulted in the amputation of Kevin Clancy’s right leg at age 48. Clancy remembers waking up on November 16, 2008 and noticing that his right foot was unusually cold. “Some of the toes had turned blue,” he recalls. “Ever since I had cancer, I’ve had poor circulation in that leg, but nothing like this.”
He was taken to an acute-care hospital the same day, where doctors discovered that only one artery was working. The decision was quickly made to remove the leg above the knee. The surgery was done November 23, and within 10 days, Clancy was transferred to Providence Hospital’s Amputee Rehabilitation program to begin rehab. Providence Hospital is one of the three integrated care divisions within Providence Healthcare in Toronto’s east end that also offers long-term care and community outreach services.
During his two months at Providence, Clancy was fitted with a prosthetic leg, and made a couple of trips home to determine what changes would need to be made to ensure a smooth transition home. Another step taken to ensure a smooth transition home was introducing Clancy to Providence’s newest service, the Mobility Clinic, where he met with his new physical and occupational therapists.
The new Mobility Clinic is designed for outpatients of Providence Hospital with muscular-skeletal impairments. It ‘fills the gap’ that opens once a patient returns home by continuing to support their therapy needs within a safe, professional, and compassionate environment.
There are two ultimate goals for the Clinic. The first is to provide individualized health-care services to improve functional abilities and promote independence. The second, more important goal, is re-integrating clients into their community and giving clients back their confidence and freedom to take charge and manage their own health care and new lifestyles.
“Kevin was confident while at Providence or at home, but there was a lot of fear each time he faced a new, public environment,” explains Clancy’s wife Christie. “For example, we had to go shopping for a light bulb, but Kevin was hesitant. He knew they were stocked at the back of the hardware store. But he did it – he summoned the confidence he needed to walk to the back of the store, find what he was looking for, get back to the car and return home.” A weekend trip to the hardware store is something we take for granted, but a milestone for someone learning to walk again after the sudden loss of a leg.
The Clinic helps people overcome fears by instilling a sense of independence through using innovative rehabilitation equipment and best practices. Physiotherapist Dellene Sakaguchi says, “Strengthening exercises help patients learn how to trust their balance again. We use tools such as a ‘core pole’ for total body conditioning.” The Clinics’s state-of-the-art gymnasium includes a variety of rehabilitation equipment, a mock kitchen and laundry room for training purposes, and a Sony Wii game system to strengthen muscles and enhance dynamic balance skills in a fun way.
“We take the time to learn about what each person’s day-to-day life involves then reintroduce them to these activities, and adapt them however necessary,” explains occupational therapist Lynne Mycyk. Staff introduced and adapted exercises and activities that would help Clancy get back to the things he loves doing, such as golfing, cooking and participating in the drum corps.
Staff members also help clients understand their injuries, their rehabilitation goals, and their achievements. Education fosters understanding; when clients see the ‘big picture’, they develop a belief in what they are doing, thereby increasing their chance of success. Beyond the physical rehabilitation provided, a sense of camaraderie and hope permeates the clinic. Clients of the service encourage each other’s progress and celebrate achievements.
With 347 beds, Providence Hospital is one of the largest rehabilitation hospitals in Ontario, and the Amputee Rehabilitation unit alone discharges up to 80 patients annually. The new Mobility Clinic is Providence’s solution to ensuring a smooth continuum of care on the patient’s journey to recovery.Beth Johnson is the Director of Communications at Providence Healthcare.

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11 June 2009

What is Autism?

What is Autism?

There seems to be a lot of confusion as to what autism and autism spectrum disorders actually are. It’s understandable, because persons on the autism spectrum can be so individually different. Some cannot talk. Some talk early. Some are highly intelligent, others have some degree of mental retardation. Some have extreme sensory issues and some don’t. Some have motor planning problems, and some are very athletic. And the list goes on. So with all of these differences between individuals, what do these people have in common? Regardless of diagnosis - Asperger’s Syndrome, PDD, PDD-NOS, Autism or any other autism spectrum disorder, what all persons with autism spectrum disorders seem to have in common is their core deficit. Autism spectrum disorders arise from a neurological condition; a weakened area that seems to be located somewhere along the pathway that runs from the prefrontal cortex to the hippocampus of the brain. No one yet knows definitively what causes this condition.

Individuals on the autism spectrum seem to have this weakened pathway, which results in the following core deficits: Deficits in: comparative thought and interpretation, flexibility and adaptability to change, creative thought, decision-making, judgment, and memory of past positive feelings about events. In typical individuals, this pathway creates a hierarchy of comparison, and interprets everything we see, hear, do and feel. It compares one thing to another, compares past to present situations, compares how we felt before to now, separates important from the unimportant, and then uses all of that information to judge situations and come up with with unique solutions. Typical people spend most of the day using this part of their brain effortlessly, sailing through thousands of little moment-to-moment decisions with ease. But for a person on the autism spectrum, all of those tiny moment to moment decisions can be quite difficult and often scary. Because of the weakened brain pathway, individuals on the autism spectrum have a limited ability to compare, interpret and solve new situations. As a result, they remain tied to using solutions they already know, and have limited ability to deal with new or changing situations. Decision-making and judgment abilites that most of us take for granted, such deciding which way to go to the store today, interpreting and understanding the actions of other people, or even figuring out how near or far to walk next to someone often cause confusion and fear in a person with an autism spectrum disorder. As a result, the world often seems chaotic and scary to individuals on the spectrum, and other people seem to act in abrupt and unexpected ways that are just impossible for them to understand.

To try to control some of this chaos and keep things predictable, autistic individuals tend to rely heavily on formulas and repetitive sequences to get through their day. These sequences and formulas rely on a different part of the brain that usually functions quite well in persons on the autism spectrum. It’s the area of the brain that runs our “red = stop, green = go”, “2+2=4″ type thinking - very formulaic, very predictable , and very absolute thought. Unfortunately, this area of the brain is unable to compare, interpret, adapt, or see possiblities. Of course when faced with new or changing situations, when most formulas won’t work, persons on the spectrum often fall apart, out of fear of the unknown. Most of the tantrums, escape, or aggressive behaviors that we see at these times are usually “fight or flight” responses, motivated out of fear, not from being stubborn, manipulative or “bad”. One of the reasons Relationship Development Intervention is effective is because it addresses this pathway directly, by using different activities to exercise and strengthen it, much like what we do for other persons with weak or damaged brain pathways, such as persons with stroke or head injury, etc. You can find out more about Dr Gutstein and Sheely’s work via rdiconnect. Until recently, trying to understand autism has been very confusing - it’s only been explained as a series of seeminly unrelated symptoms. But once one understands the core deficit - the brain pathway that ties all those seeminly scattered symptoms together into one cohesive piece, autism becomes much easier to understand, and as a result more easily targeted and treated. Copyright 2006, Sandra Sinclair

About the Author
Sandra Sinclair is a parent of a child with PDD-NOS. Sandra assists parents of children with autism spectrum disorders to create a life that they love - life by design, not demands - through her 6-step program. She is also author of Newly Diagnosed Autism Spectrum - A free mini-course with 7 clear steps you can take to help your child with Aspergers, Autism, PDD-NOS, and other autism spectrum disorders. http://www.autismvoice.com/blog/7Ste

The Priceless Penny

Isn’t it interesting, that still, in today’s society, we find indentations and grooves chiseled out in our expansive society which tries to prevent and stop our disabled population, our seniors, our financially limited person, and the less affluent from truly surviving, staying a float, or earning a decent living of their own.

How many times have you seen in the lower economic areas prices being hiked up, and increased? You would think it would be just the opposite, wouldn’t you? Well, that is not the case at all. Prices seem to soar and swell in the location and locality that need to hang on to it the most. Even though our funds are limited, and we want to use our cash wisely, we cannot. We are looked at differently, talked to differently, and come across with a different social and economic regard. We are in an unlike economic community that has been lock in, dead bolted, and padlocked for life.

The money in which we receive from one’s supplemental income aught not be frittered away by the interested parties which specifically aim, and aspire to zero in and target. Where is the social justice and the true moral concern? Where is the moral competence of big business or government to rein in and stop these unfairness’? When will big brother take responsibility and be accountable for their acts of immoral travesties? And, when will they stop taking advantage of, and stop gouging the weakest link.

If you look carefully you will find your friendly neighborhood markets, gas stations, medical facilities, employers, prescription drug companies, independent living facilities, transportation services; all giving us the least amount of respect, supply, and conveniences, for the most buck! They smile at us sweetly while they score and gouge us royally. We pay more out of pocket expenses while the pharmaceutical drug companies profit and get rich.

We as a community are sadly being faced with the realities of price discrimination while being charged retail prices. We are penalized economically, by being strictly limited by a basic welfare wage. First because we are a less net cost to society; and second, because we are disabled. We are exploited. It cost the government more to train us, teach us, coach us; and get equipment for us, thus, as a result, we are denied and deterred employment. We are subjugated in the unjust way that we are because the disabled are so called “in a depended role,” we daily, are not to be taken seriously. Nor, can we be represented because of this. They are not meeting our needs at all- we live well below poverty level, yet what positive actions do we see the government and all it constituents to make a difference in our lives? Do they do anything to help those who what to do something about there own circumstances? Do they reach there hand out to help us climb out and move up the ladder?

We also are charged double the price for prescription drugs, while drug makers are giving favor to their most valued customers. Because of our enormous collective buying power, we, the Medicare beneficiary practice price discrimination. Moreover, how many of us in the last three or four years pay for a Medicare prescription drug plan monthly, but don’t use it at all because we can’t take drugs due to allergies or allergic reactions towards them? It seems as though our monthly checks don’t even get us through the month. The more we try to rise out of the trenches of the system, the more stumbling blocks, obstructions, and blockades we have to scale. We are not treated with a social justice or a moral competence. We as the disable community pay extra coast out of pocket which we really don’t have. There are laws which have been put together to pray on the weakest in society.

So what will you say or do to help to change this desperately needed basis?

Now is your time to speak out. Take a risk. Stand up for yourself and for your life, and what you rightfully deserve. Let your voice be heard. Pay it forward. While you help yourself, you will be standing up, and positioning yourself to form an ever lasting link. Let your voice be that moral voice to be reckoned with. Don’t be afraid of your politician, your friends, or family and what they may say or think. I’m sure they will respect you if not now, later! Speak out for what you believe in! Reach out to make your thoughts and feelings known! If you don’t share them, these politicians will never know! That is the only way change will ever happen. That is the only way we will be taking action to make this a kinder gentler place for all of us. We will become partners in the disabled community, and our voices will be heard. That is the only way we will be recognized. The only way we will be taken seriously, And, the only way we will be listen to!
Let us unite. Let us come together. We must join forces. We must bridge the gap, more now than ever before. We must share our stories with people in power and office. We must make a difference in our community and society. It all starts with us- We must speak out with everything we’ve got- In this way; we will form a bond, a friendship, an attachment, and a connection that can never be broken.

We will form a more perfect union to pass on to other generations to come. We must speak out and make that difference to change laws and regulations that prey on the weakest person in society. We must engage ourselves in what ever way we can to make our voices, our word, our influence, our right-to-be-heard, our vote, or even our own say so to bring equality and justice for disabled people nation wide to enact equality for all. We must not think twice of judging or condemning. We must not look down upon ourselves or our name as disabled human beings. We need to work together, as a team to vindicate and restore our sweet name as disabled men and woman who did not choose to be handicap at all or be paralyzed with special needs. And, most importantly, we must put a stop towards this inhumane, immoral, unsocial way of life. We must fill up every hole and crack, and have each of our priceless penny’s begin to count.

A Beam of Light

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

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

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

ADHD: the tale of one boy and a dog

Liam Creed had a troubled history — until he became a dog-training volunteer and met a rebellious puppy called Aero

Liam Creed is not the most voluble of 17-year-olds. No small talk, speaks to a visitor when spoken to, and in that sense he is entirely normal. Yet for him to spend 90 minutes without swearing, kicking anything or exploding out of the room is considerable progress, and that is the level of calm that I witnessed . As a child Liam was naughty and difficult. He pulled up plants, broke things, scratched cars, was excluded from school and had no friends. He was 8 when a psychiatrist said he had attention deficit hyperactivity disorder (ADHD). Did it make a difference to have an explanation, I ask. “Not really. I just used it as an excuse for everything,” Liam replies with a grin.

This is an honest answer, and gratifyingly off-script. I am talking to Liam because his name is on the cover of a book that charts the story of a 14-year-old boy who has ADHD and has reached the last-chance saloon at school, when he is invited to spend one day a week working for a charity called Canine Partners (www.caninepartners.co.uk), which trains dogs to help disabled people. He meets a lovable and mischievous 14-month-old labrador called Aero and over six months the boy learns to take charge of the dog. In due course, a brilliantly trained Aero bounds off to his new owner, and the boy into the sunset, his ADHD under control and with a dream of working with dogs burning in his heart.

The book is based on an outline provided by Liam and his mum; the saccharine-loaded brush strokes have been crafted by a ghost writer. This is not to underestimate the difficulties that Liam and his parents have faced, and his experiences are instructive. So are his responses because he has a habit of inadvertently putting his finger on the controversy that surrounds ADHD. As often happens with recently medicalised conditions — attention deficit disorder became ADHD in the 1980s and can be treated with drugs — the number of diagnoses has risen rapidly. It is estimated that up to 5 per cent of school-age children have the condition and sceptics regard it as a convenient label for anti-social children who have grown up without structure and can’t pass exams. “I got into trouble a lot, just did things before I thought about them, probably because I wanted attention,” Liam says. “We didn’t know what to do until I was told what I had and was given Ritalin. The head teacher didn’t even believe in ADHD. Before I met Aero I didn’t think I was good at anything. After I met him I was like, I’m doing something with my life.”
Liam’s mum Heidi returns from work in a shop down the road in Chichester. I carry on asking Liam questions but instead of talking to me he looks at Heidi for reassurance, and she begins to answer for him. “I hope you’re aware that sometimes Liam can’t express what he’s feeling,” she says. Certainly she knows him infinitely better than I do, but he talks freely again when she leaves the room. “When I first met Aero he was the same as me because he wasn’t doing anything I was telling him to. We had stuff in common like him being all hyperactive. He was just a rebel. It was fun but scary. After a month I realised I was good at it.”

It was also dawning on Liam that the world was bigger than him, that some people were disabled — and that he could help. By training Aero he was taking on responsibility, I suggest. His face lights up. “Yeah, it felt brilliant. I was in charge. After a month of training, he was doing everything I told him. He would know when he’d done something wrong and he’d stop doing it when I told him. He would keep in eye contact whenever I needed him to.” That must have been a great feeling. “Yeah, ‘cos at school not a lot of people listened to me. Then I got this dog that does what I told him to. That made me feel better about myself. Made me feel I’d got a future. I stopped trying to be naughty, tried to make friends, think about other people rather than myself. When I got annoyed, instead of causing an argument I would just walk away. It was helping me to concentrate rather than just messing about. It made me feel I was wanted. I paid more attention to my work at school because before I was miserable and couldn’t be bothered to do anything. It’s made me more mature.”

What would he be doing if he hadn’t met Aero? “Lying in bed watching TV,” he says. His mum returns. “He would have been drinking and on drugs, I suspect, with the bad boys,” she says. Training Aero taught Liam “a little word called respect,” she adds. “And that to gain respect you have to give it. I’ve always said just because our [three]kids have got ADHD doesn’t mean you’ve been a bad parent. Luckily for my kids I smother them. They’ve had support.”

Liam is focusing on a carpentry course at college and doing well. He does volunteer work at Canine Partners and dreams about owning a dog, and perhaps working with them. He still takes a drug called Concerta. Such long-term use of drugs for ADHD concerns many health professionals; in the last year 573,400 prescriptions have been given for the condition in the UK.

Philip Asherson, Professor of Molecular Psychiatry at the Institute of Psychiatry, defends their use. “While this remains controversial, there are many people who have benefited from the diagnosis, learning about the disorder and finding ways to manage or treat symptoms,” he says. “ADHD tends to have a reduced impact in some as they get older, because people gain more control over their behaviour as they grow up; so I can see a structured task, that is enjoyable and helps with personal responsibility, will help a young person to gain self-control. However, a significant group of people with ADHD have more persistent symptoms that appear to require medication in addition to psychological or self-support strategies.”
When NICE issued guidelines on ADHD last year, it restricted drug use to children aged 5 and over who have severe symptoms. Most children should be offered only psychological therapy, NICE said. Few would disagree — even those who believe that ADHD is a behavioural problem rather than a neurological condition do not deny that the problems associated with the condition exist — though in practice therapy can be hard to find.

Sami Timimi, a consultant child and adolescent psychiatrist and the author of several books on ADHD, is the leading critic of the medicalisation of the condition and argues that ADHD has become an industry. “There is no evidence to back the description of it in mainstream literature as a neurological condition,” he says. “It’s now pretty clear that enthusiasm for ADHD was on the back of some excellent marketing by companies who saw that if they could medicalise behavioural problems in children they could open up a huge market for their drug products.
“There’s also good evidence that stimulants such as Ritalin and Concerta are not associated with benefits in behaviour and are associated with significant risks including growth progression and cardio-vascular problems. The ADHD industry is in jeopardy but market forces mean that habits are hard to break. NICE didn’t have the stomach to challenge that because they were aware that practice in this country would have to radically transform itself, and people don’t have the resources to do that.

“This disorder is about the age-old problem of growing boys and aggressive behaviour. Our ideas about childhood have shifted from seeing duty and responsibility as primary values and towards rights and freedoms. Parents and schools feel constrained in the way they can approach boisterous boys, so [difficult] behaviour tends to become either criminalised or medicalised.” Is training a dog a viable way of responding to an ADHD diagnosis? “It means that he’s going to have to internalise some ideas about self-discipline and follow a routine,” says Timimi. “If he’s enthusiastic, it might make a big difference.”
Andrea Bilbow is the founder of ADDISS, The National Attention Deficit Disorder Information and Support Service (www.addiss.co.uk), and the mother of two children with ADHD. In her experience the key to helping children is to find an activity they enjoy and that they’re good at. “What they need is an interest, a goal — no matter now small — something they can focus on that involves discipline and structure and that has an outcome where they can experience success,” she says. “If they haven’t got the motivation, it isn’t going to work. They also need parents who are going to support them, believe in them. Then it has a really positive effect.”

A Puppy called Aero by Liam Creed is published by Murray General at £14.99 on June 11. To order it for £13.49 inc p&p, call 0845 2712134 or visit booksfirst

What is ADHD?
The core symptoms of ADHD are lack of concentration, hyperactivity and impulsiveness. Children with ADHD commonly have a short attention span, are restless, easily distracted and fidget constantly, though not all children with behaviour problems have ADHD.

The condition may be inherited and some studies have claimed that neurotransmitters — chemicals in the brain that carry messages — and the frontal lobes that control decision-making do not work properly. Other research has suggested that people with ADHD may have imbalances in the levels of noradrenaline and dopamine. Sceptics argue that behavioural problems are learnt or develop because of a lack of structure.
ADHD is most often diagnosed in boys and often leads to underachievement at school, poor social interaction and problems with discipline. It has no effect on intelligence.

It is diagnosed after an assessment by a psychiatrist or a paediatrician. There is no cure, but it can be managed through talking therapies and, in conjunction with these, medication.

Parking lot art — Jackson Pollock style

By Sharon Sullivan

GRAND JUNCTION, Colo. — In the spirit of Jackson Pollock, local amateur artists created a painting at The Art Center Tuesday, by rolling wheelchairs across a canvas stretched over a portion of the parking lot.The Pollock Project was named for the famed late abstract expressionist artist known for painting on the ground, and flinging paint randomly on the canvas.

Although not every painter Tuesday could cut out his or her own stencil — which was then applied to a roller in front of the wheelchair — most could at least choose the shape and color they wanted to add to the canvas.“We have quite a few clients who love doing art — especially the explosive colors,” said Nikki Benning, day program supervisor at Mesa Developmental Services.“A lot of people didn't show much interest in anything until we started doing these art projects. When you mention going to The Art Center, or doing art projects, they're ready. There are lots and lots of smiles.”The Pollock Project was a collaboration between The Art Center, MDS and Very Special Arts of Colorado and their Arts for All program. The nonprofit's executive director Damon McLeese, and his daughter, Zoe, helped supervise the event.VSA of Colorado is a branch of Very Special Arts — an international nonprofit organization founded in 1974.

McLeese calls it an “Arts for All mobile art studio. With a home office/gallery in Denver, he brings adaptive art equipment to communities around Colorado at least 20 to 30 times a year for similar projects.”“The nice thing about this, everyone has added something to this,” McLeese said. “So often things are done for them, or to them. This is a much more inclusive process.”Although it may look like one huge abstract painting, there are “lovely compositions within,” McLeese said.

Clients chose all kinds of shapes, including a chocolate chip cookie, birds, fish, and big geometric shapes.Three of the canvases within the larger painting were later stretched and placed in frames to be hung at the Art Center and at MDS, 950 Grand Ave.The Pollock Project was initiated by local artist Mark Saro, owner of Unishape Adaptive Equipment, a national company that builds products for people with developmental disabilities. Saro contacted Denver's Very Special Arts to bring the project to Grand Junction. Saro began sponsoring art classes for MDS clients a couple of years ago. Since then other groups have helped provide art classes for handicapped individuals.“Our goal is to bring back art programs for the disabled,” Saro said.Tuesday was the first time The Art Center has collaborated with the nonprofit VSA of Colorado.“We'll probably bring them back. People are having so much fun,” said Art Center Director Cheryl McNab.The Art Center offers an art program once a month for the disabled. This month's event was sponsored by Wells Fargo Bank.MDS clients have a wide range of disabilities, including multiple sclerosis, scoliosis, degenerative spine disease, quadriplegia, and cerebral palsy. Jessica Snarr is a 22-year-old with spina bifida. She enjoyed maneuvering her wheelchair across the canvas, Tuesday.“I like it. It's really neat for us,” Snarr said. “I love art.” Reach Sharon Sullivan at ssullivan@gjfreepress.com.

New test for Alzheimer's disease

A team at Addenbrooke's Hospital in Cambridge have developed a new test for Alzheimer's disease.

Patients complete a series of tasks and answer questions such as "why is a carrot like a potato?"
Mark Worthington reports.

Watch the film

10 June 2009

Dr Wendyl D'Souza

07 June 2009

World's First Animatronic Animal Therapy Program Set to Open

Animal-assisted & Creative Therapies to help children with special needs

BRADENTON, Fla., May 26 /PRNewswire/ -- Animal-assisted & Creative Therapies (ACT) today announced plans to open a new 9-acre facility that will use animatronic animal therapy to assist in the development of children with special needs. Headed by renowned dolphin-assisted therapy researcher Dr. David Nathanson, the program is thought to be the first of its kind in the world. The center is set to open in December 2009.

The new iACT Center is a revamped and improved version of the well-known Dolphin Human Therapy (DHT) program, which, during its 12 years of operation, used live dolphins to provide therapy to more than 4,000 children and adults with special needs from 60 countries. The 9 acre facility on Florida's Gulf Coast will also feature a sensory trail, miniature horses, therapy dogs, art, music and parent training.

iACT will employ a Therapeutic Animatronic Dolphin (TAD) to mimic the reinforcing effects of a live dolphin's interaction with patients.

TAD was built by special effects artists Animal Makers, who have developed life-like animals for films that include Ace Ventura and Pirates of the Caribbean.

"I believe this is the first therapy program in the world to use an animatronic animal to produce measurable improvements in special needs children and adults with disabilities such as autism, cerebral palsy, Down syndrome, and other diagnoses," Dr. Nathanson said.

Dr. Nathanson's research has demonstrated that TAD is as effective as live dolphin-assisted therapy when used as a reward in therapy, increasing attention and motivation and providing a safer, more controlled environment with which to engage in therapy.

"Although my daughter had been in therapy twice before with real dolphins, she responded in a way to TAD that we could have never dreamed possible," said Rosie Petrozzino, the mother of a child with special needs that participated in a study to determine the effectiveness of animatronic animal-assisted therapy. "The opening of the iACT Center is a remarkable opportunity for any child with disabilities to realize their true potential by working with TAD."

For more information on the ACT Center, visit www.iactcenter.com

06 June 2009

Paralympic hopefuls given workout

The next generation of Great Britain's Paralympic team may have been discovered in Manchester this week after an encouraging talent identification day.

Despite great success in China - Britain won 42 gold and 102 medals in all, finishing behind only the hosts in the medal table - the hosts of the XIV Paralympic Games are not prepared to rest on their laurels, searching for future success through talent identification days.

Forty people attended the sixth multi-sport, multi-disability ParalympicsGB talent identification day at Manchester Regional Arena. It was the third such event since Beijing.

ParalympicsGB - formerly known as the British Paralympics Association - organise the try-out days to identify those with exceptional talent.

The London Paralympics, which begin in 1180 days, may come too soon for the hopefuls who were able to choose from 12 sports this week, but the 2016 Games are a real possibility.

ParalympicsGB talent officer Tabo Huntley told PA Sport: "We need to give everyone the opportunity to try out different sports.

"But this is not about participation. This is about giving those who have talent to be handpicked and placed on to programmes and high-performance environments."

Once individuals are recognised as having exceptional talent, they are transferred into their sport to hone their skills through specialised coaching.

Luke Kelly, who uses an electric wheelchair due to his cerebral palsy, was one participant hopeful of reaching the Paralympics.

The 15-year-old from Manchester told PA Sport: "I saw Beijing and I thought I really want to be a Paralympian when I grow up. This talent day was my chance and I came along."

05 June 2009

Neurological disorder can take control over victims

By Peggy Ussery
Published: June 3, 2009
It started with stiffness in her neck. Over time, Jane Murphy noticed her chin was hanging low to her chest.
Doctors put her on arthritis medicines and recommended heat treatment. The pain spread and she began using her hand to keep her head up straight. The symptoms spread from her neck to her eyelids and then to her face.
“I was on so much medicine, I wanted to sleep all the time,” Murphy said.
The ball of Tim Hornsby’s foot began to swell. He noticed his toe was falling asleep regularly. He began dragging his foot. Hornsby thought it might be related to an old back injury. Doctors ruled out stroke and Parkinson’s disease.
Today, the once active engineer uses a walker for support. His toes curl up under the constant muscle contraction. His legs lock up without warning, causing Hornsby to fall on more than one occasion — he even broke his nose once on a night stand.
“You lose a lot of dignity,” Hornsby said. “I’ve always been one that’s done anything, and to have to ask people to do things for you ...”
The pain near the front of Chrissi Brannon’s ears spread to her teeth. For five years she saw dentists, oral surgeons, neurologists and ear, nose and throat specialists. She had root canals on all her back teeth. There were doctors and others who thought the 31-year-old was drug-seeking. Her chin started to pucker out uncontrollably.
Brannon’s left shoulder began to hurt; then, her right shoulder. The pain, fatigue and depression consumed her. Last year, the wife and mother of two gave up a career she loved as a pharmaceutical representative.
“I was a go-getter,” Brannon said. “I worked all the time.”
Murphy, Hornsby and Brannon each have a neurological movement disorder called dystonia. It’s the third most common neurological disorder in the U.S., but most people have never heard of it.
Dystonia is in the same family of neurological disorders as Parkinson’s disease. While Parkinson’s eventually destroys its victim’s brain, dystonia takes the body. It’s a debilitating condition that, while not fatal, forces muscles into a constant and painful contraction, sometimes disabling patients. The muscle contraction is so intense it’s compared to 18 hours of working out. It may hit one area of the body — legs, arms, neck, face, eyes — or attack the entire body, known as generalized dystonia. It can even effect hearing and speech, and severe cases of dystonia in the neck or vocal cords can actually impair breathing.
Hornsby, who lives in Headland, attends support group meetings in Birmingham. But he, Murphy and Brannon — who both live in Newville — hope to get enough interest to establish a Wiregrass support group. They figure there are others locally also dealing with the condition.
“I just know there are so many people out there with pain,” Brannon said.
Why and how dystonia happens is unknown. There are theories. It could be genetic. It may come on after a trauma, especially a physical trauma. Some people may be predisposed to it. Stress can aggravate symptoms.
Some people have only mild symptoms, while others live in agony. There is no cure.
A common treatment for dystonia is botox injections given every few months to paralyze the muscles and stop the involuntary movements. Medications can help, and in severe cases deep brain stimulation surgery can relieve symptoms.
“I had problems and didn’t know what the problems were,” Hornsby said. “They weren’t consistent.”
Unlike many people who spend years trying to get a diagnosis, Hornsby received a diagnosis within only a few months of seeking help in 2006. However, he saw eight doctors first. Within a year of his diagnosis, his symptoms had spread from one foot to the other.
When he and his wife, Virginia, received the news, they turned to the Internet for information. What they read was disheartening.
“Emotions for me and Virginia went from rock bottom to everywhere,” Hornsby said.
He was able to walk his daughter, Rebecca, down the aisle when she got married, but he can’t get out and walk with his grandson. He’s able to keep his job with the Alabama Department of Transportation in Troy because Virginia works in the same office and drives them both. But he’s no longer able to do field work.
“I have to depend on people I trust to get out and do things work-related,” he said. “But I’ve got some good people.”
Murphy saw 21 doctors before her diagnosis in the 1980s at the age of 48. Now 70 years old, Murphy has lived with dystonia for 22 years.
“We went to doctor after doctor ...,” Murphy said. “Nobody had heard of my ailment.”
Murphy has three kinds of dystonia in her neck, eyes and face. Her facial dystonia has gone into remission. She uses a back support to help her sit up straight in church and wears dark glasses to protect her sensitive eyes.
Brannon was 31 when her symptoms first occurred in 2001. She was diagnosed in 2006. Her dystonia affects her neck, face, back and hands. The pain and the fatigue has caused her to miss a lot with her children, ages 12 and 3. But her husband, Tom, has been supportive.
“If I have a day that’s pain-free, it’s few and far between,” she said.
Brannon now worries about the numbness she’s starting to feel in her toes.
“It’s getting worse, I can tell ...,” she said. “I’m hoping for the best, hoping to keep mine under control. Mine is moving, and that’s scary.”
Brannon is not alone in her fear.
“There’s that little bit of uncertainty,” Hornsby said. “Where is it going next and when?”——————————-Want to know more?If you or someone you know is interested in starting a local dystonia support group, e-mail DothanDystoniaSupportGroup@gmail.com
Understanding DystoniaThis week is Dystonia Awareness Week. Alabama Gov. Bob Riley signed a proclamation to support raising awareness about the condition. Here is some information about the different forms of the condition from the Dystonia Medical Research Foundation:
Laryngeal dystonia/spasmodic dystonia - Affects muscles of the vocal cords, making it difficult to speak.
Blepharospasm - Affects the eyelids, causing them to blink uncontrollably or remain closed.
Cranial dystonia - Affects face, jaw and tongue. Causes grimacing, tongue protrusion and jaw closure or opening.
Cervical dystonia/spasmodic torticollis - Affects neck and shoulder muscles, turning the head to the side or forcing the head back or forward. A tremor may be present.
Hand dystonia/writer’s cramp - Causes fingers to curl and the hand and forearm to cramp. Occurs when a person attempts to use the hand for writing, playing a musical instrument or other activities.
Generalized dystonia - Affects many parts of the body simultaneously. Causes cramping and twisting in the feet, limbs and torso.