This is an excerpt from Scott Layman's speech that was delivered that the annual Putting for Parkinson's fundraiser held on July 12, 2019. Scott said,
"I am puting this out there for those who could not make the event but may be interested in reading what I had to say. I am 53 years young and have had Parkinson's for over 10 years, and this is part of my story".
I know that I receive a lot of stares and double-takes from strangers who see me in public, and all I can do is pretend that I don’t notice them. As small as something like this seems, the constant pokes at my self-consciousness begin to wear on me after days/months/years, and yet, what else am I supposed to do?
|Roofing, siding, gutters, painting.|
I experienced my worst day ever with Parkinson’s the first full day of our spring break trip to Florida this year. Joy, Tyler and his friend Jack, and I arrived in Fort Meyers Beach on a Friday, and Joy had high hopes of lying on the beach all day Saturday. I should have known what was ahead for me on that Saturday, because I was experiencing dyskinesia, or involuntary movements of my body, early in the morning before taking my medication – this rarely happens.
Joy and I made a run to Publix for groceries, and the dyskinesia worsened as the meds kicked in. Joy commented that she felt bad for me, as many fellow vacationers in the store were giving me strange looks. God bless her – Joy never felt embarrassed about being WITH me. She only felt bad that I had to endure the looks and comments. That is one of the many reasons that I love her so much.
My dyskinesia got even worse after we got back to our rental house. My body was going haywire, and Joy asked me what I wanted to do – her way of fishing for the beach-time affirmative. I told her that I knew she wanted to go to the beach, but that I couldn’t walk the couple of hundred yards to get there, much less lay there for hours. I tried to encourage her to go without me, but she stayed at the house with me. Don’t feel too bad for her – we had a pool!
As I laid there on the bed, my body twisting uncontrollably, all I wanted was peace and relaxation, and I managed to get five words out of my mouth that I never thought I would hear myself say.
“I just want to die.”
Now, before anyone rushes me to the psyche ward, I’ll share part of the conversation that I had with Joy a couple of hours later. I first apologized for saying those words, and added, “I don’t want to die. I just felt so helpless and in despair, with no control of my body. I didn’t know what to do. I just want my body to be normal again.”
Fortunately, in my lowest moment ever, God must have reached down and placed his hand upon my head, because I fell asleep, and I did not wake up until at least 2 hours later, as calm as any “normal” person out there, and able to talk to Joy the way I did just a handful of years ago – fluently and effortless. I’m not a bible thumper, and I didn’t pray for that to happen, but I believe there is some serious merit to what I experienced that afternoon.
After I intentionally decreased my medication dosage and intervals, the dyskinesia got less severe as the week progressed, and I was able to enjoy the week, which in hindsight, turned out to be one of my best spring break trips ever.
Back to my wife for a moment. Joy is, in a word, AWESOME. She never waivers in her support of me, and every day it seems like she takes on a little more as I do a little less. Like driving. Until I get this dyskinesia under control, she and I agreed that I should not drive long distances, and definitely not by myself, anymore. So, the man who used to drive the family everywhere is now content to ride shotgun as Joy gets us from place to place. She makes the 800 mile roundtrip to Virginia to visit with family without a single gripe or complaint. If the table was turned, I’d do the same for her.
Now back to me. Another problem I am having is when I know I am the center of attention, like when I am standing on the infield before a Reds game waiting to be announced for Parkinson’s Awareness Night, or throwing out the first pitch at last year’s game, or tonight when all eyes are seemingly on me, or when I am trying to converse with someone and I have too many neurons in my brain firing in different directions, the dyskinesia kicks in and I wiggle and squirm.
Sometimes it gets pretty bad. My body tightens and my breathing becomes difficult, making it near impossible to talk at all. I am better sitting than standing when I try and talk. If I stay in the corner and keep my mouth shut, I am usually fine, but then I realize how not-so-fun that becomes. Some nights I’d rather stay at home than go out, because honestly, it is easier on my body and my brain. The anxiety, or the anticipation of a challenging evening, just gets too overwhelming.
I wanted to share some of my Parkinson’s struggles with you because, well, I don’t talk a whole lot these days, and you might not know what I go through on a daily basis had I not mentioned it. As much as I hate to say it, the bad stuff needs to be shared along with the good. And if you see me out socializing around town, just know that doing so is a real effort for me. Please come over and say “hi,” and if I am unable to talk to you, simply give me a hug, a pat on the back, a wink, or some other sign. Stuff like that means a lot.
Several years ago, I coined the phrase, “Optimism Always Prevails.” I use this phrase in the signature line of most of my correspondence and I try to structure my life by these three words. As bad as things may seem to be for me, as much as I struggle to do tasks that most of you take for granted, I still have a wonderful life, a fantastic wife and four awesome kids, the cutest grandson ever, and the greatest group of friends a guy could hope for – look around…this room is testament to that.
I have too many great experiences left to share with the people I love to let something like Parkinson’s Disease get the best of me. I challenge everyone here to find the positive side of any tough situation life throws at you. The positive thoughts will get you through it. Negativity is never good for anyone.
Through our tenth charity event this past July, Putting for Parkinson’s has raised over $250,000 in cumulative money for research toward a cure of Parkinson’s Disease and support for deserving individuals through our People Helping People campaign.
For more information about who we are and what we do, please visit www.putting4parkinsons.com.
Putting for Parkinson’s