Opinion

Living with Parkinson’s disease difficult for partner, too | Sound Off

By CHRISTINE CROWELL

Don’t get me wrong; I don’t have Parkinson’s disease. I just live with it. My husband, Michael, was diagnosed with Parkinson’s when he was 45 years old, and he is now 63. Comparatively, he is doing great. After 18 years, he still walks, talks and navigates life’s ups and downs. He just does everything more slowly and with many more medications to keep him going and much more frustration accomplishing tasks that to most of us seem simple.

Mike and I met when he was 50 and had been diagnosed for five years. Why you ask, would anyone marry a person they knew had this awful disease? I asked myself that over and over again and kept answering myself with, Mike is an individual with a disease, but he isn’t the disease. I fell in love with his honesty, compassion for others and his courage in facing a difficult life ahead. And I decided, I didn’t want him to face the difficult times without me. I naively prayed that we would have 10 good years together and now we have had 12. We have so many wonderful memories of times with family, traveling and just being together.  I wouldn’t change any of them, but I am not ready to lose my partner to this disease, and I won’t be ready in another 10 years either.

Most people are somewhat aware of the physical challenges of Parkinson’s. Many people experience problems with tremor. Mike, instead, has struggled with stiffness. As a retired airline mechanic, he has screwed many screws into difficult positions without much trouble. Now, he often spends four or five hours working to get one screw where he wants it, but he still doesn’t give up. The main Parkinson’s drug, carbidopa-levodopa, causes dyskinesia. This is the involuntary movement we have seen Michael J. Fox endure as he calls himself “Shaky Daddy.” Mike’s dyskinesia has worsened over the years and is visible especially in his right leg which only stops moving when he is deeply sleeping and not dreaming.

However, Parkinson’s has affected the mechanism in Mike’s brain which holds us still while we are dreaming, so that if he dreams of running, his legs pound the bed up and down. Recently, while dreaming, he attempted to get out of bed and fell against the window sill, gashing his face and requiring stitches. Some of these types of challenges from Parkinson’s catch us unaware and require us to adjust our routines. I wonder, at what point does adjustment become impossible because we have adjusted too much?

Most people don’t know of the mental struggles associated with Parkinson’s. Depression and anxiety go hand and hand with Parkinson’s. Mike takes a medication for anxiety and another for depression. Is it normal to be depressed when one sees a future in a wheelchair and possibly diapers? Is it normal to be depressed when you fall five to 10 times a week because of your balance impairment? Yes, but the loss of dopamine in the brain which causes Parkinson’s only makes depression and anxiety worse. Parkinson’s causes sleep problems as well.

Sometimes Mike sleeps well and sometimes he goes for weeks without good sleep. These sleepless periods are when his symptoms are at their worst. His short-term memory becomes almost non-existent and his mood very bleak. Parkinson’s affects everyone differently. Some people get dementia and some don’t. Some people benefit from surgery and some don’t. Some people degenerate fast and some slowly. Thus, we never know what the future holds, we can only worry.

So why am I writing this instead of Mike? Because very little is written about the partner in degenerative diseases. I walk a thin line between having the partner I married on some days and on others having someone to care for who can’t remember our last conversation and is terribly depressed. On the worst days, I want to stand in the middle of the road and scream at God, “why are you taking him from me?” And then the next day he is fine. But I never know which days will be good and which will be challenging.

We can make detailed plans about the future one day, and the next he is making new plans because he doesn’t remember the previous conversations. When he is doing well, he is frustrated because I am still treating him like he is not well.  When he is doing poorly, I miss it at first, because the day before he was great. And worry is my constant companion. Do we move to a simpler property today and then have Mike bored because he does fine for several more years, or do we move today because tomorrow will be his last day with capable skills? I never know.

I am not sorry I married this man who teaches me daily about courage to face life’s challenges. The man I fell in love with wouldn’t be the way he is without Parkinson’s. When he was diagnosed, Mike had to re-evaluate his life and priorities. Without this experience he wouldn’t be the deep, thoughtful person that I love. But I HATE Parkinson’s disease. That hate, and probably only that hate, will never change.

 

Christine Crowell is a Central Whidbey resident.

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