«ALS. Three letters that change people’s lives. FOREVER»
Let’s Work Together For ‘A Future Without ALS’!
2014 & 2015 Ice Bucket Challenge — how it felt to me:
The diagnosis is similar if not worse than an ICE Bucket being dumped on you for the first time… it is breath cutting and bone-chilling when your doctor tells you that you have ALS.
My Story...
I started having weakness in my left hand in 1990, at the age of twenty-one, and was diagnosed with ALS on Tuesday, April 14, 1992, one month shy of my twenty-third birthday. My Expiration Date Tattoo — marks what was supposed to be my hopeful five-year life expectancy from diagnosis. I had three to five years to live in 1992; April 1997 (04.97) is five years after my diagnosis. The 0497, have become important numbers for me and my friends when faced with struggles.
Did I accept my ALS diagnosis? No, I did not, and I will not - I need to have that chip on my shoulder to keep fighting, and to keep doing what I am doing. Would I change the last twenty-five years for the unknown? No, I would not, because ALS I have lived some pretty exciting experiences and have met some incredible people. I am fortunate to be alive twenty-six plus years after diagnosis. I’m very grateful to have a wonderful family and great friends.
I still manage/managed to accomplish many dreams and enjoy fun activities with the help of family and friends as I struggle through this sentence. See my Bucket List being checked off.
I rest properly, eat properly (drink Kool-Aid everyday), keep life simply and try not to let things get to me that I don’t have control over. Why bother; life is short and precious, enjoy it! I esspecially don’t like pity because I have ALS.
See why Let’s Roll and the numbers 04.97 are important to me.
MEDIA
MP Hughes Lauds Dubreuilville ALS Activist in Parliament
Eddy vit depuis plus de 25 ans avec la maladie de Lou Gehrig
Fuel the Fire TV assists ALS hunter bag his whitetail deer
'I forgot I had ALS for two days' deer hunt Article, Pictures, Audio
Sault WALK for ALS by David Helwig
Day 6 — #SeizeTheDays4ALS Campaign (Video)
YouTube - My journey with ALS (English & français)
Un ambassadeur SLA sur le front
ALS patient says doctor-assisted dying bill...
CBC Metro Morning - End Of Life (Radio)
Projet pilot d’ambassadeur pour la SLA
Saultites walk, ride and roll for ALS
Eddy fights 'terrible disease'
MCTV News (Video)
Interview with the ALS newsletter - pages 3-11
Look here for What is ALS?
8376 days from my birth to the day I received the ALS diagnosis, and 8376 days from that day until March 20, 2015. Officially diagnosed for more than half of my life now. See picture below... I may have ALS, but it does not have me...!
2014
2015
Let's Roll Out ALS
ALS Canada — 2015
2016
2017
