Is Helping Others “Medicine”

In my role as an Ambassador for the Davis Phinney Foundation for Parkinson’s, I am asked to complete a survey at the end of each week.  The survey consists of one question and a space for comments

How much do you agree with the following statement?

“I am satisfied with the work I was able to do this past week as an Ambassador.”         
Strongly agree
Agree
Disagree
Strongly disagree

The Davis Phinney Foundation has two major goals. The primary goal of the organization is to be an outreach and educational resource with a particular focus on improving quality of life for those living with Parkinson’s disease today, and a secondary goal is to support the development of strong connections within and among the Parkinson’s community.

Some  weeks I “agree” I represent the goals of the foundation well by keeping myself informed, present and available.  Other weeks I “strongly agree” because of the variety on involvement I have with the Parkinsons  Community. 

The past couple of weeks have been  “Strongly Agree” weeks. In reality, I could have used some help myself, and some of my Parkinson’s friends caught on and did reach out to me.  What kept me going was all the activity where I was able to reach out to others. 

I was hurting from tendinitis is my knees…but wait…my elbow and wrists also hurt.  Is this PD PAIN?  I sneezed like crazy and had a sore throat but no fever…is this Covid-19? My husband was gone a lot this week helping others and I was a bit lonely and grew apathetic…is this advancing PD? And then this happened, I didn’t rinse the soap off my feet in the shower and I slipped and slid into the wall, like I was running for home plate and the throw was coming into the catcher: a perfectly executed slide.  Ouch!  

I had a boatload of stuff come my way.

And I believe this is what kept me upbeat and working through my own physical pain:

  • Local speech therapist contacted me to connect a newly diagnosed person with our support group.  I was able to give information and Every Victory Counts manual.
  • A relative was diagnosed with Lewy Body Dementia and PD. I was able to be a listening ear and counsel.
  • A member of our local support group passed away.
  • Visited with a woman who is scheduled for DBS next week
  • Visited with a mom whose son suspects he has PD
  • Visited with the guy whose mother contacted me
  • Referred him to another ambassador who lives closer
  • Scheduled future activities which I will need to start working on soon:
    • Writing blog post for DPF
    • Representing DPF on a panel of ambassadors to Twitchy Women group
    • Presenting at virtual Lions Club Convention
  • Connected with a neighboring support group member 
  • Conducted a virtual support group meeting

AND for myself I participated in a poetry group and an art group.

I slept really well at night.  I feel like I have moved beyond most of my own pain. I wonder if I would still  have that severe of pain if I had not had the  opportunities to do something for others.

I think the mental activity really helped me get beyond my own physical issues..

What do you think?

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

8 thoughts on “Is Helping Others “Medicine”

  1. You are an amazing woman! As a family, you have been a treasure trove of information and inspiration for us as my husband has Lewy Body. The Every Victory Counts manual has been a Godsend. As new symptoms and changes occur, the manual is a go-to! You have always been available for questions and advice. I am very sorry to hear of your fall and tendinitis and hope you heal well. Thank you again for all you do and continue to do for and with the Parkinson’s community. Blessings!!

  2. You are so very busy all the time, i don’t know how you do it all, I can barley manage to get up and dressed, the cold weather really knocks me down fast. Glad you are healing up from your fall. Falling is so easy to do with PD, i try to be so careful and do end up on the floor and have to have my husband help me up. Have a Merry Christmas Carol and Chuck.

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