Countdown to DBS 17days "You Don’t Look Like You Have Parkinson’s"

My friend Mike  has been acutely ill for a number of years.  I cannot even begin to list the illnesses his body has thrown at him.  Last Saturday we discovered we were going to be in the same place, and it was not either of our home towns.  So knowing that the playing field was level, we decided to meet for lunch.   I pulled up beside his car in the restaurant parking lot, popped out and shouted  “Mike you look so good!”

Mike and I have started to joke about this common greeting that is extended towards ill people.  Folks don’t know what to say, or they want to encourage you, or they truly think you look good for a person living in a diseased body.  What are we supposed to look like?  Is he supposed to be in a hospital bed with wires and tubes coming out of a grey emaciated body?  Am I supposed to be using a walker, hunched over, taking shuffling steps, not able to use my right arm except to tremor, having someone feed me?  Why doesn’t someone say, “You look like crap.  Lets see what I can do to help you?”   Are we that afraid of the truth?

When I was first diagnosed I watched videos of People with Parkinson’s in different stages of the disease. The advanced stages did more than scare me.  I was shaken to my toes to imagine I might be there someday.

I took a good hard look at myself.  The last few days have been really hard on me.  I sustained some sort of injury to my hip area.  It was extremely painful to work out the other day.  I think I pushed it too far.   A consistent routine of icing and stretching has not improved it much.  So there is an acute issue to deal with. And I am starting to look like a bent over shuffling along intermediate staged person with Parkinson’s.

Parkinson’s Disease is a chronic neurodegenerative disease. Chronic means ongoing, always there.  Neuro means  there is involvement of the nerve cells in a part of the brain called the substantia nigra where dopamine is produced.  Dopamine  is a chemical that sends messages to the part of the brain the controls movement and coordination.  Degenerative means it worsens over time. As there is less dopamine produced in the brain, a person becomes less able to control their movements.

So I have added another acute issue to the chronic everyday stuff.

There are people out there who still do not believe I  have Parkinson’s Disease. There are others who upon first hearing about my disease seem doubtful.  Why would I lie about such a thing?

I can understand why a person might say to me “You don’t  look like you have Parkinson’s?” I keep pushing myself to keep  moving, to stay active and involved.
For example….Here is what I did Thursday:

Got up took meds ate breakfast rode my bike three miles to gym worked out 30 minutes rode bike home put a load of laundry in machine showered took meds went for a massage went to friends house worked on practicing styling  my hair drove to another friends house practiced church music drove home, took meds ate dinner got guitar and went to assisted living played guitar in jam for 2 hours went home snacked took meds fell asleep on couch. Can a person with PD do all that?

So that was a pretty busy day.  But here are some things you didn’t see.  When I got up I was frozen to my bed. I could not move  my body,  I had to call for my husband to come and help me out.  I had to lean against the wall for support and just barely made it to the bathroom.  After my son got out of the car at school, I sat in the parking lot trying to figure out where I was and how to get home.  I can no longer carry the dirty  laundry baskets so I split the dirty laundry into manageable loads. It took me three tries to get my bra on straight.  It felt great to get on the bike, there was no pain in my hip or back.  But to get on and off my bike I need to lay it down step across it and pull it up.   My right foot froze and I  had a hard time picking it up to cross the bike to step on the pedal.  In the shower I had to hold on to the bar for balance and getting the bottom of my feet clean was impossible!  I cannot turn over and get myself situated properly on the massage table. I am amazed I am able to play the guitar to practice church music.  Getting ready to go to the music jam, I cannot zip up the little side zippers on my boots.  It seems to take about three minutes per side, I want to put on a little eyeliner and mascara.  What a joke! I had a swallowing issue with dinner and that is always scary.  I drop stuff all over the floor.  Capo, tuner, picks where are you? I am so exhausted I play only every other song.  My hand is tremoring badly, so its a good time to just tap along on my guitar like it is a drum. When it’s time to leave I can hardly stand up.  It takes concerted effort to get everything packed up and then I move slowly from table to table grabbing for balance until I can walk and get out the door.  At home I collapse on the couch and fall into a deep sleep.  Charlie puts a blanket over me.  When I wake up in the middle of the night I am in pain.  I seek comfort food,  Is there any ice cream?  Potato chips? Leftover pizza?  It can’t be found there. Comfort that is. The craving for garbage food…
Its  only makes it worse.

Back at the restaurant, I ordered a decadent dessert for Mike and me.  One of those brownies with hot fudge and extra scoop of ice cream.  It was a celebration to our good health.  (which won’t continue for either of us  if we eat like this).

Mike, you look good. Its not your piercing eyes or rugged face that look good. Your resolve to inner peace looks good. You let me see into your heart and soul and you looked into mine.  We share the joys and heartbreaks of chronic illness. And you asked me, “What can I do for you?”

My eyes tear up now when I think of  you, this man sitting across me  at a table in the bar of a restaurant, a man who has suffered way longer with much more serious illness than I.

You don’t  tell me I look like crap. (although you are like my brother and I would slap you if you did) You don’t say “Hey, for having Parkinson’s Disease for 8 years you look good.” 

There is no further talk about how we look…even though I greeted him with the comment “Mike you look good!” We have gone beyond that conversation.

 You just say”Carol. what  can I do for you?’

Mike understands.  Wish more people did.

Published by Carol Clupny, author The Ribbon of Road Ahead: One Woman's Remarkable Journey with Parkinson's Disease

I am a middle aged woman with Parkinson's Disease. When I was first diagnosed I spent a lot of time researching the disease. Seeing a video of a man in the advanced stages of the disease attempting to get out of his chair and then "freezing" as he tried to walk across the room got me off my butt and moving. Great adventures on the Camino de Santiago and with TEAM Pedaling for Parkinson's across IOWA, as well as the day to day adventures of life have lead me to writing. My first novel, a memoir, was published early 2019. It is called, you got it THE RIBBON OF ROAD AHEAD. Living with the degenerative neurological disease Parkinson's, ULTREIA is a word that guides me. I have chosen it as the name of my business ULTREIA BOOKS. It comes from Latin and old French and means "unfailing courage". In the old days, pilgrims would call "Ultreïa" to each other as encouragement "Go up, go further!" Nowadays we would say "You can do this thing". It takes courage to live with Parkinson's. May I face each day with unfailing courage. Ab Here is more about me; I was living an active lifestyle riding horses, hiking, climbing and snow skiing when at age fifty she was diagnosed with Parkinsons. Retiring from her career as a speech-language pathologist she decided to “take to the road” to battle the disease. Her first steps, walking out her door to the mailbox, lead to trekking over 1000 miles of pilgrimage trails on the Camino de Santiago in France and Spain. A dusty bike discovered in the garage resulted in four rides on the Des Moines Register’s Annual Great Bike Ride Across Iowa with the Pedaling for Parkinsons Team. These adventures inspired her to write a memoir The Ribbon of Road Ahead: One Woman’s Remarkable Journey with Parkinson’s Disease. Carol blogs about her everyday life as a middle-aged woman in the mid-stages of Parkinson’s disease. Her honest, humorous and casual narrative style brings the reader to an intimate understanding of Carol’s resilience and acceptance. Her blog, sharing the name of her book ”The Ribbon of Road Ahead” can be found at www.ultreiablog.org After completing a Masters of Science in Speech Pathology from Eastern Washington University Carol received certification in School Leadership and Administration from Lewis and Clark College. She provided speech pathology services and was a program director for 32 years in the wide geographic expanse of eastern Oregon. Active in the Oregon Speech-Language and Hearing Association she received honors of the association and the presidential award for her work on recruitment and retention of speech and hearing professionals. Carol presented numerous papers and projects at local, state and regional professional conferences. She was appointed by Governor Ted Kulongoski to two terms of the Oregon Board of Examiners of Speech Pathology and Audiology, the state’s licencing and consumer protection agency. Since her diagnosis in 2008, Carol has become active in the Parkinson’s Community as an advocate, an Ambassador for the Davis Phinney Foundation and support group facilitator for Parkinson's Resources of Oregon. She was appointed the regional patient representative for the Parkinson's Foundation’s Women with PD TALK study. In September of 2019 the Michael J Fox Foundation selected Carol to participate in the Parkinson’s Policy Forum in Washington DC. As an attendee at the World Parkinson Congress in 2016 in Portand, Oregon, Carol presnted a poster session examining the decision making process for patients considering deep brain stimulaiton. At the 2019 WPC in Kyoto, Japan she presented a poster on vision concerns of women with PD and lead small group discussions. Her book The Ribbon of Road Ahead has provided many speaking opportunities for Carol. In 2019 and early 2020 she visited 24 support groups in Washington, Idaho, Oregon and California to share her thoughts on living well with the disease. In addition, she has presented talks for The Center on Aging in San Francisco, Parkinson's Place in Las Vegas, Northwest Parkinson's Foundation in Richland WA and virtually through their HOPE online program. In late 2020 she rejuvenated her voice and narrated her book. It became available as an audio book in 2021. As part of this project she read stories over the airwaves on RadioParkies Australia with DJ Madonna and in Great Britain with DJ Johnny Parky. She and her husband Charlie have two adult sons. They live on a small hobby farm in eastern Oregon. Contact Information: Carol Clupny PO BOX 128, Hermiston, OR 97838 caclupny@gmail.com (541) 720-4256

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