Life on the Parkinson’s Treadmill
Last updated: March 2022
Someone recently asked me, "What do you find to be the greatest challenge of living with Parkinson’s?"
Kind of a show stopper question. I can think of multiple challenges to living with Parkinson’s but I had difficulty deciding which challenge was the greatest. After a while, my thoughts coalesced around a feeling, and that feeling has become a giant earworm.
"My greatest challenge of living with Parkinson’s is the never ending feeling that I’m running as fast as I can but getting nowhere. I’m on the Parkinson’s Treadmill."
I’m coming up on my eighth year anniversary of my Parkinson’s diagnosis. I know I’m luckier than many in that my disease progression has been of a relatively slow nature. I’m somewhere between Stage 2 and Stage 3 on any given day with both motor and non-motor symptoms.
I’m a fall risk due to serious poly peripheral neuropathy (Parkinson’s, Type 2 Diabetes, and genetic causes). Like many, I have anxiety and depression.
Prior to Parkinson’s, I found my life to be pretty easy: retired, family close by, lots of hobbies, sort of coasting along. Reminds me of an old Chuck Berry song, "No Particular Place to Go" and the lyrics: "Crusin' and playin’ the radio, With no particular place to go."
Now, I’m working physically and mentally as hard as I can and just managing to stay where I am. I’m on the Parkinson’s Treadmill for the rest of my life. Reminds me of a Hal Ketchum song, "Small Town Saturday Night" and the lyrics: "...Going ninety miles an hour down a dead-end road."
Running in place
I exercise with a Parkinson’s class twice a week, have physical therapy twice a week, and work with a physical trainer once a week. I try for 5,000 steps a day and use a recumbent bike in the case of inclement weather.
I do brain fluidity exercises, research Parkinson’s, write blogs, and read a lot. I have lost old hobbies and activities and found new hobbies and activities.
I’m not sure I can do more and now I’m facing a surgery that will cause me to be in a brace with reduced physical activities for months.
I know slowing down or stopping exercise will most likely cause exacerbation of my Parkinson’s symptoms and a more rapid progression of the disease. I’m running in place on the Parkinson’s Treadmill. Stop running and you crash out the back end.
My decision to have surgery
When I think about the next 3 or 4 months and a mandatory lessening of physical activities, I cannot seem to get this treadmill analogy out of my head.
To deal with these large negative feelings, I’ve done research on the surgery, conferred with my neurologist, physical therapist, and cardiologist.
I have talked with 2 people I personally know who’ve actually had the surgery. I even watched a video of the surgery. I think my decision to have the surgery is as fact and science based as I can make it.
I will thrive
Dealing with the feelings and emotions has been harder. First, I shortened my horizon and found short term goals I could achieve. I am dealing with the treadmill thought by making lists of the positive and negative aspects of riding/not riding the treadmill.
Turns out I’d rather live with life on the treadmill than life off of it. Last, I made sure my support group and medical team know I’ll need their help on getting back up to speed on the Parkinson’s Treadmill.
I have a very strong medical team. I have a local and online support group. I have been working on using my coping skills and adding to them with a therapist. My family is supportive. I try to learn from the past and I try to look to the future.
I will survive and get back to thriving!
On average, how many times per month do you (or your caregiver) go to the pharmacy?
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