Parkinson's Disease; After Four Years, I'm Not In Denial Anymore

Hearing the words “I want to talk to you about your Parkinson’s ” from a Neurologist should have put me into a spiral of “why me” “what does the future hold”. Instead, I was happy. Happy you say? Yes. Because for about ten years I knew there was something not right about my health. I knew it, however, putting my finger on the issue was eluding me.

It was September 2019 about seven months before COVID changed the world when I received my diagnosis. My first thought was “wow, that makes sense”. For ten years something was off. My stomach was bad all the time and  I had three stomach surgeries. I had a slight tremor in my left hand that the Dr. said was Essential Tremor. But the Dr. I saw almost every month never put together my symptoms.

To be honest, in all that time I never told my Dr. about the symptoms that would put it all together. I would have weakness in my muscles, not all the time, just enough to be noticeable sometimes. I had lost my sense of smell in 2004 (usually the first symptom). I think that if I had mentioned those to my Dr. he would have put the pieces together. I

had excuses for these and never thought they were major enough to mention.

Through all this, I have been in denial and I never noticed until the last year or so. When I received my diagnosis, I was relived that I was not a hypochondriac, I through myself into the Rock Steady Boxing program, I started volunteering, and fundraising for Parkinson’s research. I was feeling relatively healthy. My activities of daily living were not affected except In rare cases.

Fast approaching is the four year anniversary of my diagnosis and I am realizing that I have a progressive neurological disease that has an affect on my life. Everything is an effort, I cannot do the things I used do. Parkinson’s Apathy is a real symptom and I’m not being a homebody or lazy. Having my muscles always feel like I just rode my bike 20 miles affects how I do things. Having to make adjustments in how I live and how I complete everyday tasks.

I knew that Parkinson’s was a progressive disease and that eventually I would become more disabled. I felt relatively healthy for someone with Parkinson’s. But in the back of my mind was “I’ll never be that bad”. I have been in a form of denial.

I still am throwing myself into Rock Steady Boxing, I still volunteer and fundraise for Parkinson’s. But my daily living has changed, it’s hard. So I’m not in denial anymore and I will accept the phases that Parkinson’s has to offer. And I will thrive.