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Jon Blais, 34, has been doing triathlons for 20 years and has competed in 200+ races, 20 of them half-Ironman distance races. This year's Hawaii Ironman will be his first full Ironman, and his last race.
This past winter, while finishing up his master's in education, Jon was diagnosed with ALS -- Amyotrophic Lateral Sclerosis -- or more commonly known as Lou Gehrig's disease. The life expectancy of someone diagnosed with ALS averages three to five years.
Who hasn't asked themselves the question of what they'd do if they only had a short time to live? Most of us come up with things like traveling the world or fulfilling other dreams, but few would decide on the Ironman.
But Jon knows something about overcoming obstacles. He's been a special education teacher in San Diego for the last 10 years, helping at-risk youth come to grips with life and overcome their difficult situations. Now he's dealing with his own challenge.
"It goes back to my kids who have difficult lives, I tell them: 'You've got to face it.' If I went home to Massachusetts and did nothing about it -- it wouldn't be right," he says.
Choosing the Ironman
After his diagnosis, Jon was on the Web extensively trying to find out as much as he could about the disease.
"Then I wondered if anyone with ALS had ever done the Ironman before," he said. He had been following Ironman since 1982, had taped all the races and had shown them to his students.
Jon read about triathlete Scott Carlson, who died from ALS in 2000, and was inspired to do the Ironman.
"I've also just become an uncle, and my journal, photos and Web log from this experience will be something of mine that my niece will always have," he adds.Jon with new niece Anna.
"It's been 70 years since Lou Gehrig died and there's nothing; no cure. This is my way of hopefully raising awareness about ALS."
Jon's original plan was to do Ironman Florida -- his parents have a condo there -- but longtime friend Mike Ricci had something else in mind. Mike contacted NBC to ask them if they'd profile Jon if he did the Hawaii Ironman; they were interested. They'll be covering Jon's entry fee and will be interviewing him before he leaves for Kona.
"It's funny, Mike and I talked about Ironman before ... I'm a teacher, a weekend warrior. Mike always said 'you have to qualify.' I always thought I'd take a lottery slot ... I'd go if they gave me a slot. Now he's going because of me, and I'm going because of him. I'm glad he made those calls -- though I wish it was under better circumstances."
Friends and family were first hesitant about his decision, "but what's going to come is going to come regardless," he says. "Once people got over the denial -- people don't want to believe that I have it, because I don't look sick -- they were supportive." Twenty of his friends and family will show their support when they leave for Kona with Jon on October 9.
"I started my Web site, http://alswarriorpoet.com/, as a grassroots way to raise awareness about ALS and raise money for the trip, my vitamins and other expenses." He's currently living off retirement and disability, but a lot of questions remain about what he'll need in the future; will he need a special van, or need to outfit his parents' house to accommodate him, etc. Eventually he'd like to focus on raising money for ALS research.
What is ALS?
ALS is a progressive neurodegenerative disease that attacks nerve cells in the brain and spinal cord resulting in muscle weakness and atrophy. Lou Gehrig, with whom ALS is most commonly associated, first brought attention to the disease back in 1939 when he retired from baseball after being diagnosed with ALS.
A little over 5,600 people in the U.S. are diagnosed with ALS each year -- it's estimated that as many as 30,000 Americans have the disease at any given time.
Although the life expectancy of an ALS patient averages about two to five years from the time of diagnosis, many people live five years and more. Physicist Stephen Hawking was diagnosed at 21, but has lived with ALS for over three decades.
The rate at which ALS progresses and the symptoms vary from one person to another. Symptoms can begin in the muscles of speech, swallowing or in the hands, arms, legs or feet. Not all people with ALS experience the same symptoms or the same sequences or patterns of progression, but progressive muscle weakness and paralysis are universally experienced
ALS is very difficult to diagnose. There's not one test or procedure to ultimately establish the diagnosis. It's through a clinical examination and series of diagnostic tests, often ruling out other ALS-like diseases, that a diagnosis can be established.
Currently there's no cure for ALS.
When it began
"Looking back, in 2004 I felt awkward and noticed some muscle twitching ... I thought it might have been from doing Pilates -- that could have been the first sign. But I had no idea. They say you have it about a year before you're diagnosed."
But the most noticeable sign came one night while doing dishes. His roommate used to have book club meetings at their place and Jon would often clean up while they were having their meeting in the living room.
"I'd come back from a run and start doing dishes and listen to the women berate men," he laughed. That's when he noticed a weird "squishy spot" in his left hand, which he described as a pinched-nerve type feeling. Back in 1998 he had had a growth on a nerve in his right arm removed, and he thought perhaps it had recurred on his hand.
He also noticed some difficulty when he'd swim in the cold water at La Jolla Cove, a popular swimming area in San Diego. "I noticed I was getting weak, kind of flailing out there." He also noticed he was having a hard time holding things -- soap, toothbrush, etc. -- but he kept putting off seeing someone about it.
When a jaw infection put him in the hospital for a week, he noticed his hand was getting weaker, but it didn't seem severe. Again, he shrugged it off. Once he got out of the hospital he decided to have it looked at, as it was spreading to his arm.
He diagnosed himself before he was officially told by his doctors. After researching his symptoms on the Web, he kept ending up at ALS. By the time his physician wanted to do a spinal tap, Jon told his doctor he already knew what he had.
"It's crazy, my parents were always worried about me, worried about 'that phone call' since I did a lot of rock climbing. I was always careful though -- didn't get on a mountain bike until I got insurance. I would joke 'Mom, it's not going to be that -- it's going to be some sort of weird disease that gets me' -- it's so eerie. I've had health issues, all sorts of allergies, the growth on my nerve, but ALS is 1 in 50,000 -- I saw that on the Internet and thought to myself 'What are the chances of that?' I remember seeing that three years ago."
Jon mentions that muscle twitching is worst at night, when he's relaxed and trying to go to sleep. "As the disease progresses, even when you're not lying down or relaxed, it happens more and more," he says. He goes through a meditation process nightly just to get to sleep. It used to take three hours, but now it's not as difficult. As the nerves die, the twitching stops, but new areas will begin to twitch.
Muscle atrophy, or wasting, goes along with the twitching, but the way the disease progresses differs from one person to the next. He's still doing a lot of research on the Web, "and they talk about hope, but I wonder where it's coming from. I'm finding hope on my own."
"There's so much they don't know about what causes ALS. They found five different toxic metals in me that shouldn't be there ... there's a definite link to toxic waste and chemicals," he says
Jon has had a lot of practice helping others overcome difficult challenges. While in San Diego, he worked as a special education teacher at the Aseltine School, a school for emotionally disturbed and learning-disabled kids.
"It's a school for kids who are kicked out of public school because their needs aren't being met, so the district pays for them to come here. It's one of the best schools in the country for what they do."
Jon ran a summer school recreation program in which he taught health science and took kids rock climbing, swimming and hiking. He also took them out on weekends -- they went to yoga studios, smoothie shops and other places the kids wouldn't ordinarily go. Some of these kids never left their neighborhood -- they didn't have cars and many of them worked and had little free time.
"I was also working part-time at REI, so I had friends come in and show the kids what else was out there. I had firefighters come in, arranged karate and Pilates classes, and got them outfitted with climbing shoes and other gear.
"I used to pick up one kid at 6:30 am on Saturday morning for a 15-mile hike. His Friday nights were spent doing hard labor, putting up drywall until 1:30 am, but he'd still be ready for me in the morning. This kid was tough! When we were out there, other hikers would notice him and say 'hey, check out that kid' and that really made him want to do more.
"I had one student who refused to do work, but I found out he loved to cook. So he would make quesadillas every morning while the others worked. Eventually he started doing the work. It just took a little while to break those barriers."
70 years and nothing ...
"Precious few get it, even fewer know what to do with it," says Jon about ALS.
"I read a lot about Lou Gehrig, but it's been 70 years since his death -- I don't get how all this research is being done on other diseases, but there's nothing out there on ALS. It blows me away.
ALS is a relatively unknown disease, even in the medical industry. While waiting for a doctor's appointment Jon started talking with a pharmaceutical rep about ALS and she admitted she knew nothing about it. His parents attended their first ALS support meeting and realized that most everyone was in the dark.
"Every day I meet someone who knows someone who has ALS," continues Jon. "When you tell someone you have it, and they know what it is, it's because they've personally experienced it, not because they know of it in any other way."
Jon's general practitioner had only seen two ALS patients in his life, while the specialist he saw had seen about 300 people. The lack of ALS awareness made him realize he had to do something about it.
And people often confuse ALS with Multiple Sclerosis. "People live with MS, very few live with ALS," Jon says.
The road to Kona
When Jon was first diagnosed, they told him not to exercise.
"Originally the doc told me no strenuous activity ... No marathons, but an hour a day was okay. So I said, 'how about if I don't do anything for 15 days and then use those 15 hours in one day?'
"My main goal initially was to find out if I could get up at 6:00 am and do errands, train, typical stuff, and stay awake that many hours. When I saw that I could, I started riding the bike."He's ridden up to six hours and feels strong, and has been swimming in his neighbor's pool to keep his muscles symmetrical.
But does the training affect his condition?
"The excessive oxidation that occurs from training probably advances the disease, and it takes me about four times as long to recover now than it used to," he says. And the pool chlorine affects him now, but he still believes that staying mentally and physically fit is the best thing for his health.
He takes a lot of vitamins and supplements and gets massage three times a week. "My ex-girlfriend is the best massage therapist in the world, the massage helps bring me back down and releases the toxins. I couldn't do it without her."
While training, he pays close attention to how he feels, what areas are diminishing, how his muscles feel.
"I have answers to those questions except for running. Once I get off the bike, if I have to walk and jog 26 miles, then that's okay. If I get off that bike and can walk, I'm set.
"I've been at it this for 20 years, have a good mental attitude and I'm going in rested. I'm going to take the swim nice and easy, and hope nothing happens out there."
His focus is on finishing, noting "I'm not an elite athlete, it's all about finishing. If I don't, I've made the attempt. The goal is to go."
In search of Cowman
In order to do the Ironman, Jon received a letter from his doctor, giving him clearance. That made it official.
Although Jon won't be in an age group category and isn't classified as being officially disabled because he has partial use of his hand, he'll be an official participant. He needs a left hand paddle since he doesn't have full use of his hand.Jon, age 14, in his early triathlon days with parents Mary Ann and Bob.
"This is the hardest month of my life. The mind kicks in; you don't know what to expect. But once the gun goes off I'll be in my element."
One thing he wants to do is meet the legendary Cowman. Cowman has participated in every Hawaii Ironman race. He wears a helmet with horns, though every year he's disqualified because of it.
"In an interview I read, Cowman said 'nothing's handed to you here, you have to go it alone.' He's from the old days, when it was pure, but now it's about money and sponsorship. I remember watching Dave Scott pound away year after year. When I think of triathlon, I think of the early days with Mike Pigg, Rick Wells, Scott Molina -- people don't even know who they are now. That's why I think this is going to be a good homecoming for me, going to Kona."
Jon asked: "Did you ever see that movie The Shawshank Redemption? Well there's a quote that really hit home for me, it was: 'Get busy living, or get busy dying' So, what I'd do besides this, I don't know. At least now, I'm on my two feet. I'm living for today."
Kona Results: Overall: 16:28:56 -- Finish position: 1671
Swim: 1:49:06; Bike: 7:45:00; Run: 6:26:55
Visit Jon's Web site at http://alswarriorpoet.com/ and read about his experience, see photos, and check out some of his inspirational writing, or e-mail him at firstname.lastname@example.org. To learn more about ALS, visit the ALS Association Web site at http://www.alsa.org/.