My PD Story
by Wayne Rich
Before PD I would describe my life as happy. My religious beliefs helped me work through the grief of losing family members and other difficult times. I also learned to work at forgiveness in my life.
But I was forced into another world the day I was told I had Parkinson’s. What is that? A progressive neurological disease that affects muscles. Can you think of one thing you do during your waking hours that doesn’t involve a muscle?
Driving home from the doctor that day my mind was filled with many dark thoughts about how my life as I knew it was over. My wife’s life would be greatly affected also. I felt like crying. I remember very few details of the drive home.
Parkinson’s also comes with ugly mood and emotional changes.
My PD first appeared as an iceberg. I started out only looking at the tip and therefore not prepared for the totality of how it was going to affect my daily life. An early sign was my inability to open Jars. Simple issue right. This resulted in me losing a title or status symbol that I never realized I had. I no longer was the family jar opener. The act of opening a jar wasn’t the important thing, it was the reminder to both me and the family of my weakness. We installed a gadget under one of the cabinets that allowed anyone to open jars. So now I am replaced by a gadget.
The rest of the iceberg is starting to reveal itself. The next ego crusher was the first time I experienced a steady flow of tears in public. This occurred during a college football game that I attended with my grandson who was in high school at the time. During the singing of the National Anthem. I unexpectedly started crying. With tears streaming down my face my grandson looked at me with total disbelief and worry and asked what was wrong. With a strangled and cracked voice I squeaked out a barely audible nothing. I shall forever remember how embarrassed and humiliated I felt. As the iceberg exposes more and more of itself my world gets smaller and smaller. Is it going to be possible to see the whole iceberg without experiencing fear? Or is it just anger. Anger at having the fastest growing neurological disease in the world and the world doesn’t seem to notice.
“Love many, Trust Few. Always paddle your own canoe.” That is a phrase I heard frequently from my father growing up. That phrase became a yardstick for my early adult life.
A PD diagnosis changed that. A dependence on others is a learned skill.
Starting the day by acknowledging how blessed I am, has been a practice of mine for many years. Now I find myself feeling guilty for feeling that way because I am requiring others to do extra things on my behalf so I can experience those blessings. At first the obstacles were minor.
As I navigated around and through them, I felt confident. I learned to repeat the phrase "I have PD but it doesn’t have me”. As the obstacles get tougher, I seek a cave for shelter. In the darkness of the cave, I am forced to take an inventory of my issues. The physical issues while difficult for me aren’t as overwhelming as the non-muscular issues such as mood changes and heightened emotions.
I was forced to recognize that PD actually does have me.
When I tell people I have PD, I sometimes hear; You are lucky, most people live a long time with that. WHAT! Am I lucky? Winning the lottery is lucky. Having Parkinson’s just sucks.
The cave is still dark. Where is the light? I now work on avoiding certain situations that I used to enjoy. I try to not talk about subjects that are even slightly emotional because that will bring tears and choked up speech. Verbal communication used to be joyful. Now I am confronted with the fact that PD has become a dripping faucet. Stealing my joy one little drip at a time.
I am now a forced host to a disease that alters not only my physical abilities but also my mental health. My madness finds me constantly looking for things to laugh at. Including myself. Because that brings me joy and provides relief from my despair. Parkinson’s hasn’t found a way yet to take that away from me. I am forced to graciously accept help doing things I no longer can do myself. Will my disease now start stealing joy from the people I love that surround me?
Will I ever get out of the cave? I am now living in the dark like a bat.
What I need is for the government to provide funding to find a cure. That would give us all the hope that we deserve.
During the pandemic, the government gave 2 large drug companies over a billion dollars each.
They developed 2 different vaccines in just a few months.
When was the last time you heard someone talking about the Federal government providing money for Parkinson’s research?
Damn the Dark, Damn this Disease!