My Dad always said that when he was reduced to riding a three-wheeled bike, it would be time for him to throw in the towel. If he had been able to ride a three-wheel bike for the last seven years of his life, we would have rejoiced. Instead, he lived in a care facility. He was unable to walk or care for himself. You see, he’d had Parkinson’s disease for the past twenty-five plus years.
The cause of his Parkinson’s was unknown. Before that he’d been healthy and fit. He joined a genetic study on the disease and no genetic markers were found. It only confirmed what his mother had proudly declared as her heritage–British with a touch of Scandinavian and doses of Irish & French, and a big helping of Western European. He blamed his love affair with pesticides and exposure via golf, although it should be noted that he also played football. He’d been an athlete and even a coach. 23andMe even identified him as having muscle composition common in elite athletes.
He fought off his symptoms with exercise. Medications were able to control his tremors. Most of his life with Parkinson’s was happy and fairly normal. He even got a hole in one–his second–after his diagnosis. The most frustrating aspect of the disease progression was that his voice became barely audible and his handwriting unreadable.When my mother passed away three years ago, so did his ability to engage in conversation. Never a talkative man, he became someone who mostly listened.
He got weekly visits from his great-grandchildren. They ate ice cream together. They played with toy cars. We made sure visits were special by having a drawer of toys that included Silly Putty–something banned at home–in Dad’s room.
He died in his sleep at the age of 88. The months before had been happy ones. He had a lasagna party for his birthday. By Easter he was having trouble swallowing so we had a malted milk party. The first week in May brought a former student to visit and push him around town in his wheelchair. (I always looked at wheelchair pushing as a great way to work out my arms, by the way and a RAV 4 is a great car for wheelchairs–kind of low and lots of room in the back.)
After his death I looked through photos of him. I noticed one thing–he looked happy in all of them even if he did have a bit of the Parkinson’s mask face. He was happy! The point of my post is this: you can be in a wheelchair, barely able to speak, and you can still find joy. You can still savor life. You can give and receive love.
I don’t just want to remember the man with the disease. That’s not fair to history. But damn, that guy was brave, persistent, and uncomplaining. And yes, even happy. The purpose of this post is to tell anyone diagnosed with Parkinson’s that it doesn’t have to steal your joy.