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What they did & didn’t tell me about Parkinson’s Disease

From the Editors, General, Health & Fitness

It’s been more than 10 years since my father died of Parkinson’s Disease. As I watch the news coverage of the recent death of Muhammad Ali I realized that (to many) this disease is still a mystery. In many ways, it still is to me as well. But I have had the first-hand experience of watching someone destroyed by it, an experience I wouldn’t wish on anyone.

I rarely talk about my father’s illness, at least not the realities of living with it day to day. As I sat down to write about it I realized that there were too many topics to cover, I had too much to say to include in one single post. So here’s the first of … more than one post about this topic.

He’s going to die

The doctors told us this disease would kill my father. That happened a few years after we finally got a neurologist to give us a correct diagnosis on what was causing the stroke-like symptoms that everyone else couldn’t explain. It was the year we had to sign him into a nursing home.

We hadn’t considered that, that he would die from this. The doctor was trying to prepare us. He was telling us that my father didn’t have a long life ahead of him, that his death would probably come sooner than we thought. He died eight years later. We still weren’t ready.

He changed

For more than a decade my family struggled alongside my father to cope with the reality that his body just seemed to have stopped working. He didn’t develop the tremors until later, when the disease became very advanced. But the muscle stiffness hit early. He started to have an inability to walk. Sometimes he couldn’t blink or move his arms. Sometimes he couldn’t talk or close his mouth.

He had to stop working long before we had an accurate diagnosis. And, as his disease progressed, his personality changed. I saw my strong-willed father disappear into depression and anger.

He sank the little money he had saved up into alternative treatments. From acupuncture and chiropractors to herbal remedies and magnetism, he was always chasing a miracle cure he’d heard of from a friend of a friend. I’m not going to say that these treatments or professions are frauds, but the people who promised my father that they would help with the Parkinson’s symptoms were.

He tried to bargain with God. My family is Catholic, and when praying in our own church didn’t get him the miracle he hope for he started to go to others. Churches where someone would tell him that if he just believed enough, prayed enough, and (most importantly) tithed enough, God would reward him. Nothing we said convinced him that they were only after his money. Even when the miracles didn’t happen, he just moved on to another church.

My mother was unable to say “no” to him. I was unable to reason with him. He was desperate, he was sick, and we were all at a loss on how to help.

My father disappeared

My brother was in elementary school when my father’s symptoms started showing up. He only remembers the sick man. He doesn’t remember the man he was before that. The man who raised me was strong-willed, bold, slightly arrogant, supportive, relentless, witty, and curious.

My brother didn’t meet the man who taught me to try different foods before making a decision on whether or not I liked it. Who taught me never to allow others to relegate me to second-class, to stand up for myself no matter what. Who taught me to dream bigger than others said I could. At my youngest sister’s wedding my brother pushed my father (and his wheelchair) down the aisle alongside my sister. And I’m sorry that that’s the only father my brother remembers.

My family didn’t recover

My family doesn’t really talk about my father’s illness, even more than 10 years after his death. It’s too big a topic, I think. There are too many conflicting emotions.

Even now, writing this and getting ready to hit “publish” I’m wondering if I’m doing the right thing. And I still have so much more to say.


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