Lou Gehrig's Disease puts life, normality in perspective
Posted By Pete Fisher
Posted 1 day ago
Dennis ("Waumer") Wamsley found out he had amyotrophic lateral sclerosis, better known as ALS or Lou Gehrig's Disease, on August 31, 2001.

Q: Did you have any idea what was wrong with you?

A: My first symptoms were in July 2000. Looking back, I didn't know it at the time, but my left arm locked up. Then in November when I was fishing, I really noticed there was something wrong with my left arm where the muscles were deteriorating and twitching.

Q: When you went into the doctor's office did you have any idea what he was about to tell you?

A: My local doctor and I both thought it might be a pinched nerve and he sent me to a neurologist in Peterborough. I remember five minutes in he said I had Lou Gehrig's Disease. I had no idea what it was. At that time I thought six or eight weeks of penicillin and that would be it. But it was much worse than that.

Q: You've always had the attitude your bottle's half full, rather than half empty?

A: You can't ignore the fact this is happening. I think if you did, you'd be worse off than you are.

When I first got diagnosed, I sat my kids down and told them. They were more interested in going skiing that year than really what was happening with dad. At that point, it taught me to deal with things as they happen. They were only six and nine years old and their thinking is about stuff they do with you, and not so much the big picture at that time.

You have to accept what is going on under the extreme circumstances. If you have a little bit of laughter to try to break the ice to try to mask what is going on, I think sometimes you have to do that.

Q: Who came up with the idea of the Waumer Walk (an annual fundraiser for ALS)?

A: We were watching a program about how a person donated $4.8 million towards ALS. I knew after being diagnosed, I was feeling pretty bad at the time. When I heard he donated that much money, it picked me up and gave me hope.




Q: From then, it went on?

A: And from the number of people affected with ALS, mothers, brothers, fathers, sisters, brothers, my cousin, it was because of those two things that we decided to start the walk.

Q: You have it on the closest Sunday to your birthday every year?

A: My wife, Julie, is the driving force behind all this. At the end of January she said we'd better get things going for the walk. She said we're going to do it. I felt bad from her point of view, because it's a lot to put on somebody. We raised close to $30,000 the first year and over $300,000 since.

Q: The first year, the walk was held in very bad weather, wasn't it? A: We woke up to sleet, snow and rain and still 200 people showed up. It seemed to go off with a great success, and the next year we happened to have nicer weather and more people showed up. Last year, over 1,000 showed up.

Q: What has this disease taught you?

A: It sure is a humbling experience. It puts life in perspective. You go through life not thinking too much about it. You want to be a father, a worker and everything else, but you take so much for granted. I played hockey, did a whole bunch of different things sports-wise, and I look back and say, 'Man, if I only had the chance to do that again.'

Q: You're a fighter with this disease.

A: Under the circumstances you never know how you're going to react. In some ways I've amazed myself. You don't know what to do or say and you have to try to carry on and do your best. But it's about the kids and you have to try to be there for them and do your best. I'm not the father that I would like to be, to be able to go out and do more active things. But it's important to be around for them.

Q: What do you miss the most?

A: Just being normal, just being normal. I want to enjoy my cottage with my kids. I want to take them skiing and do different things - just to be me. It's hard to be me. You can't do very much at all the way you used to do. I can't talk the same, I'll have a hard time lifting anything of any weight. To open a lid on a cell phone is difficult, to carry a water bottle more than 10 feet, to drink a coffee, tie my shoes, put my pants on. All the stuff every day that people don't think about, now I have to think and struggle all day long. The disease doesn't go to sleep, it's 24 hours a day, seven days a week and it wears on you, mentally and physically.

Q: You've been a spokesperson for people with ALS.

A: This year has been a difficult year. I met a person last year at the walk who was diagnosed in February and he succumbed to the disease in October. Although I didn't know him very well, you get to meet these people, and it's hard to see them succumb to the same thing you have. It's a disease where some people go real quick and some people are lucky enough to be around for a longer time. There is no rhyme or reason, but this is all the more reason why we have to find a cure. I almost find it harder to watch somebody you care about who has the disease than having the disease yourself. Because you understand what they're going through, but when you physically, actually see somebody else going through different stages, it definitely has a dramatic effect on you.

Q: As the walk comes up this Sunday, what do you want people to think about?

A: I'd really like to keep it upbeat. I want people to go down and have a good time. But also, just try to learn a little about the disease and understand it a bit more. So they can look around at the people who have it and understand just a little what they are going through and appreciate life.

Q: Until you were 38 years old you were a "normal" person, but over the last years you've changed physically and emotionally. How do you see yourself, now?

A: I just want to be a support to somebody who needs a shoulder to lean on. I know I'm nobody special, I'm just somebody who got diagnosed with this disease. I didn't ask for this disease and neither do the others who have it. It's a terrible fate, but if we can try to make a difference, that's what we're trying to do. But I don't see myself as anything special.

Q: Wouldn't you say the people and the support you have here has been amazing?

A: It's wonderful. People have come out and helped more than I would have ever imagined. It's more than heartwarming. If I get dwelling on that too much, there would be a puddle of tears where I stand. The entire community has come out and supported us over the years. Last year, a little girl had a birthday and donated a portion to the Waumer Walk. I'll tell you, it isn't all about the big doses of money, it's about the heartfelt companionship of a small community that has come together that has supported us through thick and thin. If cures were made from that sort of stuff, I would have been better seven years ago.

Q: In years to come, how do you want people to think of you?

A: Just that I got up in the morning and tried my best. I never wanted to be a superstar or anybody special. All I wanted to do was get up and be a normal person. Probably more so now than ever. Just simply because I know how beautiful normal can be.

ALS is a neuromuscular illness affecting about one in 10,000 people in North America. About half of all patients die within 18 months after diagnosis and only 10 per cent live longer than 10 years, ALS is considered to be an incurable fatal illness. Some, however, do beat the odds.

To take part in this Sunday's Waumer Walk to help raise money for research, please contact Julie Wamsley at 905-372-8119 or see www.als.ca/events and follow the links. The walk starts at Cobourg's Victoria Park at 11 a.m., with registration at 10 a.m.

pfisher@northumberlandtoday.com

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