DON GRANDCHAMP

My husband, Don Grandchamp, passed away, July 2, 1996 from CJD. Our story began in October, 1995. Don had been very fatigued and was not "himself". Normally a very energetic and vital person, Don was slowing down. He was very frustrated and not very happy.

The first "incident" which signalled something was wrong, he was plowing our driveway and almost drove the plow into the river, which flowed in front of our house. He said he didn't know what happened. At Christmas, his favorite time of year, he had absolutely no spirit. On January 5th, his boss called me to say they were sending Don to a neurologist, he was unable to recall maintenance procedures he did on a regular basis and they were afraid he might get hurt or cause damage, he was a machinist and maintenance mechanic in a chemical plant.

He first went for a CAT scan, then for a MRI and EEG. The neurologist called on a Saturday morning and in a very inhumane way told me I should get my husband's affairs in order as he would probably be dead within 9 months to a year. Not quite the news we had expected.

We took Don to a prominent neurologist at NYU hospital, hoping against hope that the diagnosis was incorrect and the doctor in Albany didn't know what he was talking about. During all this, Don's symptoms progressed, dementia, fear, myoclonis, ataxia and frustration for us all. Thank God for the many dear friends and family, especially our children during these times. Unfortunately, Dr. Plum's diagnosis was the same as the doctor in Albany, CJD!!!!

My daughter and son shared in the caretaking with me. It was so difficult and horrifying watching one of the most wonderful human beings being slowly destroyed by this disease. Don was truly one of God's children, loving, forgiving, kind to a fault and ever constant to us all. He was 45 years old when he left us. The empty place in our lives can never be filled. His love and support is so missed by anyone who knew him.

I have spent many lonely nights, wondering how this disease entered our lives......and how devastating to so many people.

My heart and love go to all who face this disease. It takes great courageand love to watch, with no hope, as your loved one slowly slips away, and toward the end, doesn't even know who you are.

I wish to all of you going through this horrible time right now, the gift of peace and love, hoping you can find some solace knowing how courageous and wonderful you the caretakers and the victim of this disease are. Our only thing to hang on to is that there will come a time when you will see your loved one again, whole and happy.

Debbie Grandchamp

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