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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?
As I wiggle my way through the checkout line at the grocery
store, I put my food on the belt the same as the guy behind me, and my body
squirms uncontrollably as I try and converse with the cashier, and this get
worse as I my brain screams at my hands to get the card out of my wallet.
Eventually, I get through the ordeal, and I actually congratulate myself for
passing another test in humility … grade to be determined. That sums up an
average trip for me to Kroger.
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 round-trip 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.
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