Massage and Cerebral Palsy

Massage in cold weather I would not have believed it!

Cerebral Palsy: Social and Educational Issues

Cerebral Palsy: Social and Educational Issues - early intervention, rights, evaluations, special ed, IFSP, IEP, IHP and transitions to adulthood.: "Western culture has always portrayed sex as taboo for anyone, disabled or not, and for many years it was assumed that people with disabilities were asexual, or that they did not have a desire for sexual intimacy."

Drink Aid

For most people getting a drink of water is a simple task that doesn`t take much thought, but until recently one Dickinson teen with cerebral palsy relied on everyone around him to keep him hydrated. That`s all changed thanks to a new invention.

(Watch the video -- link on same page)

Great Fan

Light clouds, a chill in the air, a soft breeze. A nice day for a walk. For D.J. Gregory, every day, through hot and cold, rain and wind, up and down, is a great day for a walk - and it's getting better all the time.

In this story by Anthony Gimino D.J. Gregory shows great love for golf.

Something to Watch

MCLEAN, Va.--(BUSINESS WIRE)--Inspire, a company known for building online communities for nonprofit health associations, today announced that it will partner with United Cerebral Palsy of New York City (UCP/NYC) and United Cerebral Palsy National (UCP) in Washington, DC, to develop and manage an online community for parents of children with cerebral palsy and other development disabilities.

Man with CP will join "UP with People"

Way to go Steward, please read this story by Jane Andrews from Maine.
Stewart Caswell makes plans to hold a Valentine’s Day dance at the Shrine Club on Waldo Avenue to raise money for his tuition to Up With People, a group that performs community service and sings internationally.

Caswell plans to join the Up With People organization in July and will spend several months traveling, performing community service projects and singing to promote international understanding that breaks down barriers.

Botox Linked to Deaths

Posted by Ken
The popular anti-wrinkle drug Botox and a competitor have been linked to dangerous botulism symptoms in some users, cases so bad that a few children given the drugs for muscle spasms have died, the government warned Friday.
The Food and Drug Administration's warning includes both Botox, a wrinkle-specific version called Botox Cosmetic, and its competitor, Myobloc, drugs that all use botulinum toxin to block nerve impulses, causing them to relax.
In rare cases, the toxin can spread beyond the injection site to other parts of the body, paralyzing or weakening the muscles used for breathing and swallowing, a potentially fatal side effect, the FDA said.
Botox is best known for minimizing wrinkles by paralyzing facial muscles — but botulinum toxin also is widely used for a variety of muscle-spasm conditions, such as cervical dystonia or severe neck spasms.
The FDA said the deaths it is investigating so far all involve children, mostly cerebral palsy patients being treated for spasticity in their legs. The FDA has never formally approved that use for the drugs, but some other countries have.
However, the FDA warned that it also is probing reports of illnesses in people of all ages who used the drugs for a variety of conditions, including at least one hospitalization of a woman given Botox for forehead wrinkles.
The FDA wouldn't say exactly how many reports it is probing.
"We're not talking hundreds. It's a relative handful," said Dr. Russell Katz, FDA's neurology chief.
But the agency warned that patients receiving a botulinum toxin injection for any reason — cosmetic or medical — should be told to seek immediate care if they suffer symptoms of botulism, including: difficulty swallowing or breathing, slurred speech, muscle weakness, or difficulty holding up their head.
"I think people should be aware there's a potential for this to happen," Katz said. "People should be on the lookout for it."
Friday's warning came two weeks after the consumer advocacy group Public Citizen petitioned the FDA to strengthen warnings to users of Botox and Myobloc — citing 180 reports of U.S. patients suffering fluid in the lungs, difficulty swallowing or pneumonia, including 16 deaths.
Nor is it the first warning. The drugs' labels do warn about the potential for botulinum toxin to spread beyond the injection site and occasionally kill, but the warnings link that side effect to patients with certain neuromuscular diseases, such as myasthenia gravis.
That's what's different about these latest cases, said FDA's Katz: The botulism toxin seems to be harming people who don't have that particular risk factor. (Cerebral palsy involves a brain injury, not a disease.)
Still, the FDA cautioned that its investigation is in the early stages. It has asked Botox maker Allergan Inc. and Myobloc maker Solstice Neurosciences Inc. to provide additional safety records.
Allergan spokeswoman Caroline Van Hove said children with cerebral palsy receive far larger doses injected into their leg muscles than the doses given adults seeking wrinkle care.
In a statement, Solstice said it supports FDA's probe but stressed that the agency hasn't concluded the drug poses any new risk.
While the FDA said the problems may be related to overdoses, it also has reports of side effects with a variety of doses.
Public Citizen's Dr. Sidney Wolfe criticized FDA's warning as falling short. He asked that the agency order a black-box warning, the FDA's strongest type, be put on the drugs' labels and require that every patient receive a pamphlet outlining the risk before each injection.
"Every doctor needs to notified about this, every patient needs to be notified," Wolfe said. "Children are showing the way, unfortunately some dead children."
He said drug regulators in Britain and Germany last year required that sterner warnings be sent to every doctor in those countries.

Docs Use Wii Games for Rehabilitation

Posted by Ken

Some call it "Wiihabilitation." Nintendo's Wii video game system, whose popularity already extends beyond the teen gaming set, is fast becoming a craze in rehab therapy for patients recovering from strokes, broken bones, surgery and even combat injuries.
The usual stretching and lifting exercises that help the sick or injured regain strength can be painful, repetitive and downright boring.
In fact, many patients say PT — physical therapy's nickname — really stands for "pain and torture," said James Osborn, who oversees rehabilitation services at Herrin Hospital in southern Illinois.
Using the game console's unique, motion-sensitive controller, Wii games require body movements similar to traditional therapy exercises. But patients become so engrossed mentally they're almost oblivious to the rigor, Osborn said.
"In the Wii system, because it's kind of a game format, it does create this kind of inner competitiveness. Even though you may be boxing or playing tennis against some figure on the screen, it's amazing how many of our patients want to beat their opponent," said Osborn of Southern Illinois Healthcare, which includes the hospital in Herrin. The hospital, about 100 miles southeast of St. Louis, bought a Wii system for rehab patients late last year.
"When people can refocus their attention from the tediousness of the physical task, oftentimes they do much better," Osborn said.
Nintendo Co. doesn't market Wii's potential use in physical therapy, but company representative Anka Dolecki said, "We are happy to see that people are finding added benefit in rehabilitation."
The most popular Wii games in rehab involve sports — baseball, bowling, boxing, golf and tennis. Using the same arm swings required by those sports, players wave a wireless controller that directs the actions of animated athletes on the screen.
The Hines Veterans Affairs Hospital west of Chicago recently bought a Wii system for its spinal cord injury unit.
Pfc. Matthew Turpen, 22, paralyzed from the chest down in a car accident last year while stationed in Germany, plays Wii golf and bowling from his wheelchair at Hines. The Des Moines, Iowa, native says the games help beat the monotony of rehab and seem to be doing his body good, too.
"A lot of guys don't have full finger function so it definitely helps being able to work on using your fingers more and figuring out different ways to use your hands" and arms, Turpen said.
At Walter Reed Army Medical Center, the therapy is well-suited to patients injured during combat in Iraq, who tend to be in the 19 to 25 age range — a group that's "very into" playing video games, said Lt. Col. Stephanie Daugherty, Walter Reed's chief of occupational therapy.
"They think it's for entertainment, but we know it's for therapy," she said.
It's useful in occupational therapy, which helps patients relearn daily living skills including brushing teeth, combing hair and fastening clothes, Daugherty said.
WakeMed Health has been using Wii games at its Raleigh, N.C., hospital for patients as young as 9 "all the way up to people in their 80s," said therapist Elizabeth Penny.
"They're getting improved endurance, strength, coordination. I think it's very entertaining for them," Penny said.
"It really helps the body to loosen up so it can do what it's supposed to do," said Billy Perry, 64, a retired Raleigh police officer. He received Wii therapy at WakeMed after suffering a stroke on Christmas Eve.
Perry said he'd seen his grandchildren play Wii games and was excited when a hospital therapist suggested he try it.
He said Wii tennis and boxing helped him regain strength and feeling in his left arm.
"It's enjoyable. I know I'm going to participate with my grandkids more when I go visit them," Perry said.
While there's plenty of anecdotal evidence that Wii games help in rehab, researcher Lars Oddsson wants to put the games to a real test.
Oddsson is director of the Sister Kenny Research Center at Abbott Northwestern Hospital in Minneapolis. The center bought a Wii system last summer and is working with the University of Minnesota to design a study that will measure patients' function "before and after this 'Wiihab,' as someone called it," Oddsson said.
"You can certainly make a case that some form of endurance related to strength and flexibility and balance and cardio would be challenged when you play the Wii," but hard scientific proof is needed to prove it, Oddsson said.
Meantime, Dr. Julio Bonis of Madrid says he has proof that playing Wii games can have physical effects of another kind.
Bonis calls it acute "Wiiitis" — a condition he says he developed last year after spending several hours playing the Wii tennis game.
Bonis described his ailment in a letter to the New England Journal of Medicine — intense pain in his right shoulder that a colleague diagnosed as acute tendonitis, a not uncommon affliction among players of real-life tennis.
Bonis said he recovered after a week of ibuprofen and no Wii, and urged doctors to be aware of Wii overuse.
Still, as a Wii fan, he said in an e-mail that he could imagine more moderate use would be helpful in physical therapy "because of the motivation that the game can provide to the patient."

Go ahead, point and laugh

Josh Blue has heard the charges. Too many of his jokes focus on his disability, cerebral palsy.

This guy is great I hope you get a chance to see him perform.