[Stitcher]

Awaiting rejuvenation: San Angelo man takes untested treatment for Parkinson's

By Jayna Boyle (Contact)
Friday, December 14, 2007
http://gosanangelo.com/news/2007/dec...man-takes-for/

Last year, Linda Walls was told to hire hospice to help care for her husband, who has Parkinson's disease and could no longer dress or feed himself.

"We had planned his funeral, down to the songs and who would be pallbearers," Linda Walls said.

A year and a half after that rough spell, John Walls is dressing and feeding himself and doing other everyday things doctors didn't think he would be able to do as a result of the effects of the chronic, degenerative disease.

Walls took the bold move of going to a Central American country to undergo an unproven form of stem cell treatment this fall in hopes of reversing the effects of his accelerated Parkinson's disease. He also uses an infrared sauna to improve movement and takes vitamins.

There is a question of whether the $25,000 procedure in Costa Rica can do what it is supposed to do.

When they found out that Walls, who is 60, has a non-fatal form of Parkinson's, the couple were relieved, but nevertheless they were frustrated. They were told there was nothing they could do - other than take medicine - to help control the disease.

"It's a very cruel disease," Linda Walls said. "It's like being trapped in your own body."

Parkinson's disease is a motor system disorder that is the result of a loss of dopamine-producing brain cells. The National Institute of Neurological Disorders and Stroke reports that there is no cure for Parkinson's disease.

Soon after Walls was given his diagnosis, experts in Rochester, N.Y., told the couple about the Costa Rica-based Institute of Cellular Medicine, a facility doing research with stem cells. John Walls fit the profile for research that the institute was doing.

The treatment, John Walls said, is not offered in the U.S.

The treatment was intended to relieve Parkinson's symptoms within a year. This is how it was conducted:

Doctors took 12 milliliters - about 2 1/2 teaspoons - of stem cells from John Walls' own pelvis bones. The cells were frozen in a cryogenic container, and once they were determined to be healthy, scientists regenerated the cells to prepare them for infusion into his the brain. Doctors used two operations; in each, 500 million stem cells were run through a catheter that started in Walls' groin and went to the base of his head at the blood-brain barrier. The catheters were each left in the brain for an hour and a half.

The blood-brain barrier is a membrane that controls the passage of substances from the blood into the central nervous system, according to the National Institute of Neurological Disorders and Stroke. The barrier is a protective device, but it also makes stem cell treatment of the brain more difficult, said Jo Bidwell, a Texas expert on Parkinson's disease.

"Stem cell use with Parkinson's is very promising. The problem has been breaching the blood-brain barrier - it makes it more difficult than using stem cells on other organs," said Bidwell, coordinator of the information and referral center at the American Parkinson's Disease Association at the Covenant Health System Neuroscience Institute in Lubbock.

Although Bidwell had not heard of the Cellular Institute of Medicine or their research procedures, she said one question she had about John Walls' procedure was the apparent lack of stem cell manipulation before they were put into his head.

To effectively treat Parkinson's with stem cells, the cells must be manipulated to become dopamine-producing cells, Bidwell said. The stem cells wouldn't automatically know what to become.

The Wallses said they were told the stem cells would go to the weak parts of his brain - where the dopamine-producing cells had ceased production, causing the Parkinson's symptoms - and would replace those cells.

John Walls and Nancy Brandon, a patient from Lansing, Mich., were the first Parkinson's patients to undergo the procedure in Costa Rica in the manner in which it was done.

Walls said he was scared to be the first to have the procedure done, but he felt that he had nothing to lose.

"The night before, I was a little nervous," he said. "I was in a foreign country, and doctors I just met were going to poke around my brain."

Researchers at the Cellular Institute of Medicine did not return multiple Standard-Times phone calls.

The procedure, done Sept. 27, cost the Wallses $25,500, not counting travel expenses.

Researchers at the Institute for Cellular Medicine will monitor John Walls for the next five to six years. He will be in contact with them by telephone.

Bidwell said some earlier studies show Parkinson's patients treated with fetal stem cells developed dyskinesia, or erratic movement of the body. Part of it is from the disease, she said, but part of it is from over-development of the dopamine replacement cells.

Researchers could not control the dopamine cells that were being produced in the body, Bidwell said.

Some studies in the U.S. are using dopamine-producing cells extracted from the retina.

She said Food and Drug Administration restrictions make it difficult for stem cell research to advance, but the retina research started in Georgia and is now done at the University of Alabama School of Medicine.

For now, the Wallses say they see subtle improvements in John's condition.

"He's grinning now," Linda Walls said. "He's not a mask anymore."

Parkinson's disease affects muscle movement, so John Walls' face often was no indicator of the emotions he was feeling.

"I feel optimistic," John Walls said. "I feel better than I did."

Walls can now shave and button his shirt with his right hand, and he can tie his shoes. Several people have told him his speech is clearer. He still takes dopamine medication and practices home therapies.

"We are totally confident that this is going to work," Linda Walls said.

[Ronhutton]

What does it mean when it refers to,
"they found out that Walls, who is 60, has a non-fatal form of Parkinson's"
I have always believed PD was a non fatal disease, but could cause a fatal disease like aspiration pneumonia
Ron

[aftermathman]

perhaps PD as opposed to PD plus syndromes, either way somewhat detracts from the journalistic integrity.

Neil.