East Bay Newspapers
East Bay, RI
Thursday, September 29, 2005

BARRINGTON - The Ironman competition is a grueling test of skill and stamina involving swimming, biking and running a combination of more than 140 miles. For Jonathan S. Blais, it will be even more of a challenge. Mr. Blais was diagnosed with ALS, better known as Lou Gehrig's disease, in May, and plans to take part in Ironman Hawaii in mid-October.

Mr. Blais, 34, spent his earliest years in Barrington and Seekonk, Mass., before moving out west. In July, he returned to his parents' home in Seekonk. He decided to leave his career and life in California and head back to New England while he still could drive and do those things he used to take for granted, like turning the key in the ignition. In a few months, both of those tasks may be impossible.

Although he is already feeling some of the effects of the disease, Mr. Blais will be fulfilling a lifelong dream to take part in an Ironman competition.

"This is my final battle. When I'm in a wheelchair I'll know I've done Ironman," he said.

ALS (Amyotrophic Lateral Sclerosis) is a progressive neuromuscular disease that weakens and eventually destroys motor neurons. The motor neurons transmit the commands to move from the brain to the muscles. The life expectancy of ALS patients is usually three to five years after diagnosis.

For Mr. Blais, it's the little things that underline the changes, the relentless progression of the disease. There are days it is difficult for Mr. Blais to open a tube of toothpaste and brush his teeth, and he has to wait for ice cream to soften before he scoops it from the container.

This has been a fight for his life, but Mr. Blais is no stranger to competition. He has competed in nearly 200 triathlons since his teens, several of them in Barrington. Although he will not be able to compete physically as strong as he was even a year ago, he views Ironman Hawaii as a way to increase others' understanding of a rare and fatal disease as well as a personal challenge — this triathlon is more about spreading knowledge of ALS than being first across the finish line.

"This is my job now, raising awareness," he said. "They talk about hope, there is no hope, so I talk about motivation."

Mr. Blais' involvement in the Ironman competition will be followed by NBC Sports. An old friend, Mike Ricci, is a multi-sport coach and helped make the connection, and the spot in the Ironman competition, possible.

Looking back

In the living room of his parents' home he has work spread out — scrapbooks to organize pieces of his life, dozens of slides from his years working with special education students in California. He has also spent hours on the computer setting up a web site, www.alswarriorpoet.com, with information about the disease and about life. He hopes the information he puts together may help others in the future.

Mr. Blais taught in California until late June. In the last few months he gave away most of his possessions, and wrote a will. It was not the turn he expected his life to take.

"This school year I would have been done with my masters in education. I dropped that with two months to go. I had to pack and get everything in place here."

Although Mr. Blais was diagnosed with ALS in May of this year, symptoms began over a year ago. The disease struck unexpectedly, with the first symptoms appearing in January 2004.

"I never would have expected it. I don't have any genetic predisposition to it," he said.

His life has changed tremendously. Mr. Blais has been an athlete nearly his whole life. Besides competing in triathlons he has backpacked across Europe, and spent many hours rock climbing and bike racing. Now his left hand is slightly twisted, and he often wears a hand brace to support it. It is more difficult to raise his arm above his head.

"I have trouble holding a fork. I'm left-handed. As the muscles atrophy they go in the direction they go. Eventually it affects all the muscles, and you can't talk, walk, eat or swallow, and your lungs can't pump properly."

Mr. Blais said there has been little research done on the rare disease since Lou Gehrig, a baseball player, was diagnosed in the late 1930s. There is also little in the way of medication or treatment. Some say vitamins and antioxidants can help, so he takes handfuls of these every day. He takes a muscle relaxant at night to help with the twitching associated with the disease, takes warm baths and meditates before sleep in an effort to calm the effects of the disease, like twitching, that are more obvious when the body is relaxed. Twice a week he gets a professional massage that reduces cramps.

There are lots of theories about ALS but few solid facts. It's conjectured that toxins may be a factor in the cause of the disease, toxins in the environment or in food or the soil. Mr. Blais worked on a farm for years in his younger days and says perhaps working with fertilizer was a factor. But there is no conclusive evidence.

"You don't know, people who don't do any of this stuff come down with it," he said.

Website to raise awareness

Barrington native Jonathan S. Blais will be facing one of his toughest challenges in October — he plans to compete in Ironman Hawaii.

* His website: Barrington resident Cliff Karten established the web site for Mr. Blais, his long time friend — www.alswarriorpoet.comM. The website will include a live diary of events in October, and more information about Mr. Blais and ALS.

* The race: The ironman competition will include a 2.4-mile ocean swim followed by a 112-mile bike race, finishing up with a 26.2-mile run through the lava fields of Kona.

* Raising awareness: Mr. Blais' participation in the Ironman competition will be recorded and profiled with NBC sports in November. Mr. Blais hopes the coverage will do much to heighten an understanding of the disease.

* Raising money: A fundraiser is currently running to help Mr. Blais go to the Ironman competition in Hawaii and help with expenses related to the disease. Those who would like to help can send a check to Jonathan Blais at 172 Marnoch Drive, Seekonk, MA, 02771