When Eddy was diagnosed with ALS in 1992, he was given three to five years to live. His symptoms began with a weakness in his left hand that gradually progressed throughout his body.

“Over the next 15 months I was unable to skate, run the length of a squash court without falling, and was constantly being asked, ‘Are you drunk?’ because of my speech,” says Eddy.

The prognosis was frightening, but Eddy vowed to stay true to himself. When Doctors told him not to research too much about the disease, he learned everything there was to know about it. He was told to stay away from sugar – but he still consumes a Kool-Aid every day! “I’m 47, and I don’t plan on changing,” Eddy claims. “It seems to be working for me.”

Twenty-five years after his diagnosis, Eddy is still rolling. He considers himself a voice for people who have passed away before their voices could be heard. When he was first diagnosed, Eddy focused mainly on what the disease would take away from him. Over time, his perspective shifted. He now focuses on everything he has gained because of the disease; all the opportunities he has been given and the things he has done and people he has met. He thanks ALS Canada for the support and the equipment program in place that has helped him to afford his wheelchair and communication devices.

“This disease is an expensive one to live with,” says Eddy. “Especially when you don’t have insurance to help cover equipment needed. With ALS Canada equipment program in place, it’s a welcome help for many of us and our families. I personally can tell you I stopped counting my expenses at $200,000. I only paid a part of that $200,000+ after receiving government funding and much appreciated ALS Canada funding.”

Eddy firmly believes that life has always been good to him even though he was dealt ALS at a young age. “I managed to accomplish many dreams and enjoyed many fond activities. My bucket list is still being checked off. It is important to me that people know what ALS is. I want everyone in the world to know that this is a terrible disease to live with. I never accepted having ALS, but I learned to live with my sentence. I am fortunate to still be alive this long after my diagnosis. I have learned that it is easier to smile than to be ticked off at my fate.”

Eddy is participating in ALS Awareness Month through fundraising initiatives. He set a goal of $25,000 by June 2017 to represent the 25 years he has lived with ALS. He has officially surpassed his goal, just as he surpassed his prognosis. Eddy says he creates awareness in hopes that people worldwide will donate to a society, organisation or group related to ALS.

Let’s Roll, Eddy!

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