The “Perfect Friends” of this Person with Parkinson’s

In my most recent “Book Talks” and blogs I have addressed more psychological or emotional issues. While I might call these non-motor symptoms the “soft Parkinson’s symptoms, they are not “soft” at all. The non-motor symptoms provide some of the hardest challenges a person with Parkinson’s faces.  These symptoms include depression, anxiety, delusions, hallucinations, constipation, urinary urgency, sexual dysfunction, sleep issues, loss of smell and taste, fatigue, swallowing difficulties, speech issues, cognitive disorders, obsessive-compulsive behaviors…the list goes on.

Because Parkinson’s is so complex and misunderstood by the general public may people with the disease experience embarrassment or shame and withdraw from social interactions.  This was a recent occurrence with me, so I decided that if I have these problems, others do too. In my recent talk with the Wenatchee, WA Parkinson’s support group, I mentioned what each of us could do to engage another whose situation may be worse than ours. What I didn’t talk about was what our friends and family without Parkinson’s could do to make a social outing less “scary” or “embarrassing”.  Two events in the last two days have been great examples of “perfect friends” reaching out to me.  I would like to share these with you.

My friend Jill called to see if I wanted to go kayaking.  Jill and I used to kayak at least once a week but have not been out together in two years! This is primarily because I was embarrassed that I could not get into and out of my kayak, and my once decent paddling had diminished and so that I lagged behind the group. Jill had arranged for me to use our friend Anne husband’s ride-on-top kayak which had a seat and back.  We met up with Anne at her house and with every step of loading up and traveling they assured me there were no time restraints and I could move along at my own rate.  I was a bit anxious about getting in the kayak, but they had already brainstormed a strategy for this, and it was a breeze!  When they noticed me getting behind, they hooked a short rope from the back of one kayak to the front of mine. I could still paddle but I was not getting exhausted AND I was close enough to be included in the conversation.  Stopping paddling to drink water was emphasized.  They had planned a beach stop so we could “defuel” some of that water we drank.  At the beach, I easily got out of the kayak and both friends helped me up to even ground. Jill stood by me chatting (like I didn’t know that she was there ready to catch me) until I got my land legs on and my trekking poles out.  The water was like glass as we paddled back. Getting out of the boat was so much easier because they had made it safe and my confidence was boosted.  When we arrived back at Anne’s house, we got to play with her fluffy 4-week-old puppies.  I was filled to the brim with joy!  #1 My friends never once spoke of my weaknesses, only commenting on how they were glad I could come along, and when were we going to go again.  #2 They had preplanned solutions to the challenges I might have. #3 Being vigilant, but not overbearing,  #4 not being hurried to do anything #5 and laughing through things that generally make me want to cry (like not being able to get my shoes on) helped make this outing a  big “WIN” for me.

Today I saw Nancy’s name as I was cleaning up messages on my phone.  I checked the last message and it was from 2 months ago when we were looking for times to go for coffee, and we didn’t connect.  I texted her to see if she was free, and she was.  #1 Nancy said, “I’ll pick you up.” #2 When she arrived, like Jill and Anne she was not in any hurry.   We sat in the new camper van and chatted. She asked me if I had any other errands to do today, and “yes” I had three things. #3 She said, “I love to run errands, let’s go”.  #4 At the coffee shop, she saw I needed a straw and grabbed one before I could get up.  #5 When she saw I was getting tired she said, “I have somethings to do at home, so unless you have anything else you need, I will drop you off.”  I had a wonderful morning, without stress, without shame or embarrassment and got somethings done.

Both positive social situations were made possible by thoughtful friends.  A little planning, a little consideration on their parts and my cup is filled to the brim and ready to pour out to others who need it from me.

If you have friends who you sense want to help don’t be afraid to communicate your needs.  Not everyone is a ”natural” problems solver. Nor is everyone as intuitive as my friends.  Your friends do want your company and they do want to do things that you enjoy. They just don’t know-how.  It’s your opportunity to teach them. Reach out to them. You’ll be glad you did.

 

Reference: Davis Phinney Foundation Website article “What are the Non-Motor Symptoms of Parkinson’s, Parkinson’s 101, January 2017

 

 

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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