[BobbyB]

Man with ALS says research key to beating disease
Sunday May 18 2008
By Shannon Schuller, Special to the Guardian

For Al Pettit, a normal day would consist of worrying that he might not be able to see his family again. He has been diagnosed with amyotrophic lateral sclerosis (ALS), and in 2003 doctors said he would only live for another two to five years.
This is the case for many patients that are diagnosed with ALS. Pettit, a former Mississauga firefighter has outlived every person that was diagnosed at the same time as him. He first noticed something was wrong when he went to the Philippines. He had been there for a week or two when he noticed the muscles in his calf had been twitching. Pettit assumed it was simply his change in diet.
When he returned home he paid a visit to his doctor. It was assumed that the muscle twitching was a result of the cholesterol pills he had been prescribed. The doctors advised Pettit to stop taking the pills for two months and report any progress.
In that time, nothing had improved. He was tested for a calcium imbalance, and a shortage of potassium before being referred to a neurologist. Three months later, the neurologist diagnosed Pettit with ALS, and sent him for a second opinion. Two weeks later, another neurologist had a new theory. She put him on an autoimmune medicine that gave him a full-body rash. Her diagnosis was then changed to ALS.
June 7 marks the third annual WALK for ALS in Brampton. Last year, approximately 300 Brampton residents attended the walk, raising between $30,000 and $35,000. This year, 70 per cent of all proceeds will be going towards equipment for people with ALS, and 30 per cent will go towards research. The equipment will be donated to the ALS Society of Canada, who lends it out to people with this disease.
ALS is a disease that attacks muscles. The muscles fail to receive signals from the brain, which eventually weakens and kills them. This disease does not affect your mind, however, so as you become paralyzed and progressively ill, your brain is still aware of what’s happening. The disease kills by attacking the muscles in the lungs, until they collapse.
“Quite a few people just take this as a death penalty. It really is a death penalty,” said Pettit.
Pettit was offered chemotherapy, which would kill his immune system. From there, they would build it back up in hopes that whatever was attacking him would die. Eight days later Pettit was sent back to his doctor, where he refused any more chemotherapy. In March 2004, he asked to be sent to the ALS clinic in Sunnybrook.
Upon his arrival, he was prompted to try chemotherapy for another six months, but it still didn’t help him. The clinic then prescribed the only drug that proved to fight against ALS, which only prolongs a person’s life for three months, however, it costs $700 per month.
“To me, three months is a long time. I could have another granddaughter in three months, and to me that’s important. A lot of people say why bother, whereas I find I want to live. The alternative is dying, and that’s not a good alternative for me. I want to stay alive,” said Pettit.
Today, Pettit has been taking a new lithium drug for six weeks that is used to treat bipolar and manic depressive patients. After performing a research study, a group of Italian researchers discovered that this drug in a smaller dose might help ease the affects of ALS. Pettit and his wife haven’t noticed much change in his symptoms.
“At least I feel like I’m doing something. There is no cure, and there is no treatment,” said Pettit.
“The worst thing about ALS is watching someone dissolve. This affects everybody,” said his wife Lee Pettit.
Pettit says his biggest challenge is to keep his hope up that something will become available to help him. According to Lee, he always says that he is living with ALS, not dying with ALS.
“Research is the only way we’ll find a cure, or even something to slow it down,” said Pettit.
Lee and her associate Liz Fox are hosting the third annual WALK for ALS in Brampton on June 7.
“Because the disease is so fast moving, today you need this equipment, but tomorrow you need something else. No one can afford to keep on buying these things,” said Lee.
Many ALS patients also need automatic wheel chairs, which can cost $23,000. The government and the ALS Society of Canada contribute money towards the purchases of these chairs.
Pettit’s walking group is called ALS Pals. To make a donation to his group, or to the ALS Society, visit www.walkforals.ca.
For more support for those who are suffering with ALS, visit www.alsforums.com.

http://www.independentfreepress.com/.../article/49097

[Bluford]

"....haven’t noticed much change in his symptoms..." to me, that could be taken as a meaningful, positive result of the lithium rather than a negative result. unfortunately, time will tell and hopefully in a year or longer, you will again say "...haven’t noticed much change in his symptoms..." then you will hopefully also be saying "...pass the lithium..." i have als and am taking lithium along with rilutek. i will keep it up. so far, this to me, is the only true, positive result of research.