Memories of Parkinson's Disease

Children can see disease quite differently when adults don't panic

We have replaced Peter's story with a reflection on the way children see the way diseases can affect the lives of the people who have to live with those diseases. We will resume the discussion of bright light for PD, neurological diagnosis, and the way people consider disease to be the elephant in the living room on another day.

Reflections on a Childhood Memory of Parkinson's Disease

                        by Mags

Thinking back to my childhood, I hold memories of my grandfather's daily diabetes testing. I remember that every morning he would test and then calmly give himself a shot of insulin.  We never talked much about it, it just was there, part of his life and part of ours in the early morning.  He never seemed to have a problem; he was diligent about the testing and the insulin and that was that.

There was always a private stash of Hershey bars in his dresser drawer just in case. His diabetes developed later in life and if it cut his life short, he still lived to be 89. What I really remember about him was that he was a wonderful storyteller, had a real sense of humor and enjoyed arguing with my father. He had diabetes, he dealt with it daily so that he could go on with the things he enjoyed.
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I remember a wonderful cousin who had juvenile diabetes, a friendly jovial disposition, a father with serious money. Together they spent his childhood traveling around the world trying to find a clinic or hospital which could cure him.

As an adult he was in a weird denial about his condition. You never knew if he was going to go into insulin shock or a diabetic coma because you never knew what he had eaten at his last meal of snack. As a result of his journeys with his father, he loved to travel but cast the disease to an ignored corner. Although in and out of hospitals because of problems caused by diabetes, he refused to identify with it or to be identified by it. Michael pursued an impossible dream of not having diabetes. And it killed Michael when he was in his early 30s.
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I also remember my grandmother's second husband, a successful businessman with a nasty way of dealing with waiters and waitresses.   By contrast his hobby was portrait photography. And he was better than good.   As I sit here I can see his photograph of a favorite great uncle.  What I see is the handsome essence, the intelligence, the gentleman, and the loneliness of that uncle - I see what professional photographers strive to achieve throughout their careers.

When Bombi (my toddler name for grandma's husband) developed Parkinson's, he was told by his disability insurer that if he was claiming the disability, he would also have to give up the photography to be indemnified...which he did...it was good business for him (it would have broken my heart). I remember his hand tremor as I was growing up. I knew he had PD but that wasn't who he was - the tremor was just a part of him. I remember a man who had sold his joy in life for survival.
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Valuable lessons are provided as we grow. What we see as children becomes part of who we are, how we think, feel, react and live.