The idea for today’s post came from this article from Brain and Life. It is written in first person which gives us insight into how our loved one might be thinking.
I remember the first time I was embarrassed for my husband in public. It was in the first 5 years since his diagnosis of Parkinson’s Disease, and we were at a public restaurant. Dyskinesia set in, and he was moving uncontrollably while seated across from me. He leaned toward me and asked, “Do I look normal?”
He looked like some of the footage we see of Michael J. Fox when he is experiencing dyskinesia which makes it look like he cannot sit still. This can happen with a burst of carbidopa/levodopa, which is the leading drug to control the symptoms of Parkinson’s. (That is a simplified explanation. More on that another day.)
But back to hubby’s question. For many years he could mostly mask the symptoms of Parkinson’s, but they did begin to cause necessary changes in his life. When he was still working post diagnosis, he shuffled his feet as he walked from office to office at work. He had to concentrate to control that so he did not call attention to himself.
As the disease progressed, he realized that he had trouble carrying things while walking at work. If he wanted to carry a drink, he had to be sure it had a lid, and filling it only half full was safer than totally filled. Eventually he had to leave his drink behind, but he could manage a pad of paper.
There were some things we would normally do with one hand that he had to do with 2. That made the shaking less noticeable. He wanted to appear as normal as possible, keeping his symptoms hidden, even though his coworkers knew he had Parkinson’s, so he kept adapting.
When the affects of the disease made work too difficult, he retired on disability, ready to enjoy his time at home. And he did enjoy many good years researching and writing at home. In that period of his life, he could forget about having a disease and just enjoy his freedom to create. He didn’t have to hide anything or mask his symptoms.
This was true for the first 19 years of his life with PD. Then I remember the day he said to me, “Well, I guess I can’t hide the fact that I have PD anymore, can I?”
I wanted to reply with, “You are delusional if you think you have been hiding it all along!” But, of course, I didn’t.
Instead, I smiled and said, “Have you been trying to fool people all these years?”
When I think of normal in the context of chronic and degenerative disease, I believe that whatever life looks like today, is today’s normal. Life is always changing, so tomorrow may be a new normal, and that is okay. We just adapt. That’s who we are. Caregivers. Adapters.
Thanks for reading, and have a great week ahead.