Countdown to DBS day 25 motivation

February 25
Recently I have been dealing with a great deal of pain.  I have had the usual PD pain, but its been complicated by sciatica.  So pour on the physical therapy from a very gifted clinician, have weekly therapeutic massage from the best around, work with a knowledgeable and observant personal trainer and stretch and bend and drink lots of water and eat well and WOW I licked it.  Then an ear infection, inflamed throat, a huge change in barometric pressure and a great big wind storm, me attempting yard work, a dose of apathy  seasoned with an added measure of depression…put me  in the recliner for a few days AND yowza let me tell you I am back to square one for pain and depression.

So today I started fresh. I didn’t mean to do all of this stuff, but it happened.  I still hurt, but its a pain that has been shared, addressed, laughed about, fed and  now blogged.  I feel good.

First thing this morning I fed my pint sized house guest breakfast and returned her to her real home. This could have done me in for the day but this little girl is a gem and made it easy easy easy!

Then I went to see this lady who knew exactly what was going to be hard today and made me do it!  Actually Cindee  at Higher Power Fitness is nothing less than intuitive and supportive and yes she gives me hard things to do but never gives me something I can’t do.  I felt proud of myself for getting through her well thought out plan for balance improvement today.  I am so lucky to have her on my support team.

I guzzled lots of water and headed to my next appointment just about 6 blocks away.  I was welcomed by Mary who has studied hard and long to become a therapeutic Massage provider.  Mary assured me that my my sweaty body would be acceptable on her massage table because Cindee induced sweat was ok with her.    Oh my she knows how to  fix what ails you and today

I felt like a huge block of cement as I slowly but less-pain-ly left her office.

I MADE IT HOME.
I sent a quick text to my husband to see what he was doing as I planned to nap  and next thing I knew I was on my bike riding to meet him for lunch.

You would not think The Last Chance Tavern would be a great lunch spot, but it really is.  Lunch was followed by a meet up with Nancy and we rode about 10 leisurely miles, stopping for a treat and to say hi to Marla at Obie’s. At home I stretched and fell asleep (imagine that) I woke up realizing I was going to be late to play music at a nearby assisted living center. I joined Joan the fiddler and the cast of regulars playing some pretty darn fast bluegrass music (with some gospel tunes thrown in).  I was  wiped out to begin with so Charlie dropped me off and returned at the appointed time to retrieve me. There is something about playing the rhythm guitar in these jam sessions that is  both exhausting and renewing at the same time.   PS:  I was glad my driver tonight showed up and did not park in the “future resident” spot  as I am not quite ready to move in to Brookdale.  

I learned that I cannot let up on how I eat, how I move, where I let my mind go.  I have to keep it up.  The past few days have provided enough evidence based data.  Be good Carol.  Be good to yourself.

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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