I Am a Work in Progress
Society can often treat people with Parkinson’s disease (PD) as if they need wrapping in a soft blanket or worse, as second-class citizens. I think there is another way.
I was misunderstood
I wallowed my way through denial, remorse, and anger during my first year with Parkinson's and became somewhat ambivalent about telling anyone I had PD. Misunderstandings frequently occurred whenever I let people know.
I often felt their inference was intellectual disability. Many people, from my point of view, did not understand the differences between neurological disease and intellectual disability and seemed unwilling to take the time to understand.
Like many people with Parkinson's, “I'm fine” became the safest answer to the question “How are you?” I became less engaged. Often sensed I was just wallpaper and felt people began treating me as a person who needed tasks done for me.
I felt dissatisied with my life
I began to back out of social situations. Acquaintances and even some doctors looked to my wife to answer questions about me that I would normally have answered.
In my Parkinson's world, people with Parkinson's, as a group, were viewed as too fatigued or too disabled to help. For example, "Don't ask him, it will take twice as long" or "She can't get it done anymore." Other times it would be, "He has cognitive problems" or "She is too tired to help with this".
The action I observed from others was: "We’ll do it for him"! I was dissatisfied with my life with Parkinson's.
Fighting my Parkinson's
Very nice intentions from well-meaning people could be limiting me from doing everything I could to fight my Parkinson's. I finally listened to the mantra from the Parkinson's Foundation, the Michael J Fox Foundation, and my neurologists to keep my brain and body exercised, engaged, and as busy as I can.
Once we discussed my diagnosis, my immediate family has always treated my Parkinson’s as just another “thing”. No big deal! My wife is a wonderful care partner who expects me to take care of myself, random house repairs, and the yard until I can’t.
She is absolutely supportive in my desire to do it myself, but does do random safety checks and the occasional veto. Can I get the rest of the world to change? Probably not!
Actions for change
I realized that if a change was needed, it was me who had to change. I'm taking 9 actions.
- I forced myself to re-engage with the greater world. Harder than I thought, but I am doing it
- I exercise more frequently and harder. I have more fatigue, but the good kind
- When anyone asks “How are you?”, I answer briefly as if they really want to know. Hit or miss on perceiving the "really wanting to know" part.
- If incorrect assumptions are made about Parkinson's, I clarify. Polite conversation works noticeably better than argumentative confrontation.
- I started giving talks about Parkinson’s in the community. My public speaking skills are a little rusty but I found humor helps the conversation along.
- I re-discovered my written voice as a way of communicating to a larger audience.
- I do as much as I can for myself. (No to ladders, carrying packages, and driving. Yes to walking with hiking poles and to safe household chores)
- When old hobbies or skills no longer fit my abilities or when my new abilities don't fit my old hobbies, I changed the paradigm. I can’t hike anymore so I found 45,000 new relatives instead. I can no longer drive because of my feet so I'm taking lessons in hand control driving
- I’ve become an advocate, coach, and mentor for others. Mostly a success, some abject failure, steep learning curve!
I'm living a dichotomy. I don't want others to treat me differently because I have this disease. But if I am going to stay as engaged and as active as I possibly can, I’m going to need some help.
Turns out, having others help me to stay active both physically and mentally works pretty well. I will do everything I possibly can, plus 10 percent, to keep my brain and body active. Your help is needed. I am a work in progress and will always be one.
Do you live with any sleep disorders (eg. insomnia, RLS, sleep apnea) in addition to PD?