Blog
Parkinson's disease has been a part of my life and family for as long as I can remember; my grandpa was diagnosed with the condition when I was little. From my earliest recollections of him, Parkinson's was an ever-present reality. I remember my dad telling me stories of my grandpa before his diagnosis, and those two people seemed so different. I've heard he was active, charismatic, and had a bit of a temper. I didn't know that guy.
For those who do not know me, I am the Assistant Director of Parkinson Support and Wellness. The short version of my Parkinson story is that in early 2019, my dad was diagnosed with PD. I started to volunteer for the Steady Strides committee in 2020 and was then hired when they were looking for a third employee. Really though, it is a longer story than that.
There is a special balance in responses when someone tells you that they have a difficult diagnosis. It’s sort of a Goldie Locks thing on steroids. Some of the reactions are too hot. You are now the illness. Nothing you have done or will ever do will ever count again. You are now to be pitied. Some are too cold, “That’s nothing. I know someone who just takes a pill and everything is great.”
Diagnosed at age 36, I am now 51 and have been living with Parkinson’s for 15 years. Fighting back is not easy. Parkinson’s is an unrelenting wind that blows from all directions. But as we resist, we are strengthened, and we work continually to retain what we can for as long as we are able and encourage others to do the same along the way.
In 2018, I was experiencing memory issues; I couldn’t remember what happened the day before or memories from a few years back. For 10 years I had experienced REM sleep disorders. My sleep doctor recommended me to Dr Rhonna Shatz, a UC neurologist. She diagnosed me with a form of Parkinson’s Disease in 2019.
I want to tell my father’s story and the part of it that is my story. I need to tell it. It’s been inside me for so long, and I’ve shared pieces, but it has evolved. I come to a greater understanding of it all the time, through the people I meet in this work, through hearing their struggles and their stories of hope, by telling pieces of my dad’s story and hearing people’s reactions to it, through learning new things about trauma and about myself. These things cause more of the tiny little lights strung across the darkness to turn on and help me to see things more clearly.
In 1997 I noticed that, despite being right handed, I was using my left hand only to shampoo my hair and drink beverages. Hmmm, that’s odd. At the end of the year I made a New Year’s resolution to do something about it, and after my primary care doctor ruled out a brain tumor with an MRI, I was diagnosed by a neurologist with Parkinson’s in March of 1998. Since both of my maternal grandparents had PD, I thought I knew what I was dealing with.
Seven years ago, Dr. Brewer my neurologist and movement specialist, leaned over and said, “Ruth, you have Parkinson’s disease.” I remember my mind being flooded with thoughts, questions, fears, and sadness. Why me? Will I lose my ability to walk? How long will it be until I lose my independence? What problems will I be facing?
When you are diagnosed with chronic disease like Parkinson’s, no one promises that because you have Parkinson’s, you will not also experience other illnesses or tragedies, accidents or losses. It is just the way things are. But sometimes it makes me want to jump up and holler, “Wait a minute! Isn’t Parkinson’s enough?!”
Exactly a year from today, I will be getting married. If you’d asked me a month ago if I thought my dad would still be here to see that, I would have said “no.” I’m still not sure if he will be able to walk me down the aisle unassisted, or if we will have a father-daughter dance. The future has been rather uncertain lately.
"Shocked". "Confused". "Heartbroken". My family and I went through all the standard emotions I suppose. I look back to the person I was in 2009. Physically, I want to be that guy again. What I thought was such a burden THEN is barely a challenge compared to what I'm facing just 12 years later. Mentally and emotionally... No, I don’t want to be that guy. I've come too far from the day I heard the word “Parkinson's.”
