It has been well over a decade since I was diagnosed with Parkinson’s Disease, yet I remember it so vividly. One of the patients at the clinic where I was volunteering said, “hey, your pinky is shaking “. I had already noticed this earlier in the morning, but was too busy to think about it. During the week, the shaking proceeded from the pinky to the entire left hand, and I knew something was happening.
Working in medicine has its pros and cons. I had already decided the rapid onset and progression of the tremor was from a brain tumor, ALS ( Lou Gehrig’s, Disease), MS, or Parkinson’s. At any rate, I knew I had to see a neurologist soon. Long story short, by June, I was diagnosed as having Parkinson’s Disease.
Since there is not a specific lab test, x-ray, or any other means of technical methods of diagnosing PD, we simply ruled out the others, and concluded based on my symptom, I had Parkinson’s.
I remember saying it for the first time when scheduling my next appointment with the receptionist. “I have Parkinson’s.” I am not sure what reaction I thought she should or would have, but I clearly remember my reaction as I listened to the words coming from my lips….Oh dear God, I have Parkinson’s. Followed immediately by saying to myself, “ok, I can do this…..!” Whatever the “this” meant. After all, I knew something about Parkinson’s mostly from my medical training and, of course, what I remembered was Parkinson’s is a debilitating, chronic disease with no cure. Yikes!
At first, I only shared the information with my husband. Then our kids. Then gradually the rest of the family and my friends. I seem to ease everyone’s discomfort by noting that PD does not have to alter my mortality or morbidity, even though I was unsure about both…Over time, I adjusted to being asked by just about everyone, “How are you?” My standard answer was always, “Good.” It was just easier than to tell people that I was scared, I fell a lot, I was tired from shaking all day, I could not sleep and I felt like everyone was looking at me. It became my mantra to say, “I have Parkinson’s, like Michael J. Fox.” It help break the ice especially with strangers. Inevitably, the cashiers, the hair dressers, the waitresses or whomever were then prompted to mention that they had a grandfather, mother or cousin with Parkinson’s. I was always impressed with the kindness of total strangers toward me once they knew.
As the years went on I just got use to Parkinson’s being a part of my life, but tried desperately for it not to consume by whole being. Of course during the Covid era, it became a mixed situation. I did not see many people so my increased physical symptoms were less apparent to others, but I felt isolated and depressed. Knowing mental health is also greatly impacted by Parkinson’s, there were many days that were long and dark. My saving grace was the online program provided by Bodies and Balance for Parkinson‘s patients. The daily class literally treated my mental and physical symptoms and provided support.
Finally, the Deep Brain Stimulation Procedure became a no-brainer (no pun intended). After having it, I became a different me. Please see my posts on my journey prior, during and the months following DBS. I say a “different me” because the process that I and others experience when finding out that you have a chronic neurological disorder naturally affects you. However, I am still me, but with the depth and breadth of the walking (and falling) encountered on life’s path with Parkinson’s.
A final note, I attended a fun luncheon with a group of women friends. The person sitting next to me said, “You wouldn’t even know you have Parkinson’s. How do you feel?” I simply answered, “Good.”
Illustration: Pinterest