I am the husband (58) of Corinne (53) we have 6 Children with 5 married and 7 grandkids with one on the way.
I still work full time as a building contractor and also serve as primary care giver for my wife - flexiblity in my work schedule allows me to do this.
Corinne's possitive attidude and bubbly personality has made her an inspiration for others with ALS and others facing less devastating situations.
About 19 years ago Corinne and I were watching a TV documentary about Lou Gehrig and ALS. I can clearly recall Corinne becoming emotional and mentioning that ALS must be the most devastating disease that one could have (slow paralysis and death in a few years). Corinne expressed how, should she ever be afflicted by ALS, she would never be able to cope.
Well fast forward to Dec 2004. At age 50 and in excellent health and a good singer, Corinne noticed that her voice would break while singing. Over the next few months we noticed that her voice would sound nasal, particularly in the morning. We consulted with our physician and over the next 10 months and visits to an ear nose and throat specialist and neurologist, finally ended up at the Hamilton ALS clinic and Dr Turnbull. By November 11, 2005, all other causes were ruled out and ALS was confirmed.
Confirmation of the knowledge that you have ALS comes over a period of time. The point were you realize that there is no other possible cause for the symptoms and all hope for a normal life is wiped out is devastating.Notifying family and friends and the emotions involved are an experience similar to announcing a death. Yet within a short time things do return to a "new" normal made easier by our faith in God and we know all things are in His hands.
Twenty nie months have gone by. Corinne now is unable to speak or eat. She uses a small Palm unit with text to speech features and nourishment is provided by formula injected through a stomach (PEG) tube. She tiers easily and walks short distances with difficulty - stairs are not possible. Buttons and zippers are hard to manipulate but if you saw her you could not tell there was anything wrong. She still manages some minor daily chores but can no longer drive. She remains very positive and deals with difficulties by easily adapting and finding new ways of doing things. A wheel chair is now a necessity for anything over 100 ft and we recently obtained a power chair. A chair glide is used to access the 2nd floor. A suction machine is used regularly to clear her mouth and throat of fluids to prevent ckoling and the laundry room is being coverted to be used by her as it is better for accesss. She uses email and a web cam to communicate. This is something she was a real "Luddite" about but out of necessity quickly adapted to. Over the last 2 years we have taken note of the ALS slogan "what would you do if you still could" and travelled extensively doing the things we had planed to due in our retirement years and hope to continue to do this for as long as possible.
We have come very active in fund raising for ALS over the last few years and are involved in organiziing the Hamilton Ontario "Walk for ALS". With the help of freinds and relatives we have raised about $90,000.00 over the last 2 years ,for the cause, and we do so to help those stricken with ALS and provide funds for research so in the future other will not have to deal with those "three letters that change your life - forever".
Apr 10, 2008
Sep 11, 2013
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