Life on the Parkinson’s Treadmill

By Phil Horton

3 min read

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."

The progression

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!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The ParkinsonsDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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Suzanne Troy Member
<inline-mention username="Phil Horton" user-id="3091946"/> Hello, thank you for your thoughtful and well written article Phil! I always enjoy hearing from fellow advocates with PD on how you manage your daily life with PD. As a care partner for my father with PD and dementia (age 87) I glean ideas on how to help my dad and mother (his primary care partner) to manage daily life with this disease. My dad has been fortunate physically since his diagnosis at age 72. His struggles have been more cognitive. He still rides his recumbent bike often (indoors) and can walk fairly well. We look forward to the spring weather to do this more. Thanks for sharing your story! All the best, Suzanne Troy, fellow team member, <a href='http://ParkinsonsDisease.net' target='_blank'>ParkinsonsDisease.net</a>
Lorraine Wilson Member
<inline-mention username="Phil Horton" user-id="3091946"/> , I appreciate your treadmill analogy. I wish you the best as you undergo surgery and the recovery period, Lorraine, <a href='http://parkinsonsdisease.net' target='_blank'>parkinsonsdisease.net</a> moderator
tomatera Member
My thoughts exactly. Well put! The truth is we are all on the treadmill, but we can’t keep even at that. We are still losing ground. Non-parkys think it’s just mind over matter. If you just try harder you can overcome they think. Well, I get up every day and dread putting out the 150% effort to operate at most a 50% level of everyone else. I’m jealous of people that don’t have it. The joy of life is gone because we don’t have the dopamine levels in our brains to experience the simple joys anymore. 
1. Marc Mitnick Member
 Thank you for your comments, Tomatera. I hear you loud and clear! PD is a cruel and hard disease to personally experience. In my opinion, more information is needed on the dreadful disease, so others who are not afflicted can realize it can be fixed by "mind over matter." Best, Marc M., Moderator, <a href='http://parkinsonsdisease.net' target='_blank'>parkinsonsdisease.net</a> ""
2. Marc Mitnick Member
 <inline-mention username="tomatera" user-id="3103590"/>, I hear you. Living with PD is hard. Some non-parkies may think it is just mind over matter, but as we know, this is. not the truth. Personally, I am not jealous of those people that do not have PD. I can understand that you feel the joys of life are gone which medically is called anhedonia. As we age, we have thoughts of how we would spend our golden years with joy. However, PwP have to redefine living with PD, and create a new 'joy' and peace in our revised 'golden years.' Regards, Marc M., Moderator, <a href='http://parkinsonsdisease.net' target='_blank'>parkinsonsdisease.net</a>
Rooney10 Member
Hi Phil, what an excellent way of describing pd .My amazing dad fought the disease for 18 years and he sadly passed away last month due to later complications due to pd .unfortunately he was diagnosed when he was only 58 so was only 76 when he died .But on the positive side he live a good 13 14 years with excellent quality of life, it was only the last 4 years he began to battle with medication combinations plus the lockdowns we ad didn't <a href='http://help.He' target='_blank' rel='noopener noreferrer ugc'>help.He</a> was a very clever man and always kept himself busy with hobbies and loved having is family round him .At his funeral we played is favourite song ,you win again, by the bee gees ,and that's what he did and you should do take every thing pd throws at you as a fight ,and as he did and I'm sure you will ,he won a lot more than he lost .Good look my friend. 
1. Dan Glass Member
 <inline-mention username="Rooney10" user-id="4543730"/> What an awesome tribute to your dad... thanks for sharing, reading, and commenting.
Dan Glass Member
<inline-mention username="Phil Horton" user-id="3091946"/> thanks for sharing your positivity, story, and soundtrack!
Rooney10 Member
Thankyou ,it's been 9 weeks now since my dad passed away and I miss him terribly, but I know where ever he his, he won't be suffering with the latter stages of this horrible disease <a href='http://pd.Me' target='_blank' rel='noopener noreferrer ugc'>pd.Me</a> and my mum have finally been able to talk about things and both agree that the medication side of things should have been managed <a href='http://better.But' target='_blank' rel='noopener noreferrer ugc'>better.But</a> as carers and not sufferers of pd .how could we tell him otherwise. My father was always a very active person and would very rarely just take time out to sit or even go for an afternoon nap as retired people do in there <a href='http://70s.So' target='_blank' rel='noopener noreferrer ugc'>70s.So</a> with a man with pd to keep up is level of activity the more madapar and supportive drug he would need ,I think he was taking premapexul at this stage .I'm not sure the amount he was on but it must have been too much as the dyskanasia was terrible, he could literally shake himself of a chair and the facial expressions were not nice to see ,my mum always used to say to him while ever you jiggling on the outside its doing the same to your brain on the inside,and dyskanasia is a sign of to much <a href='http://madapar.may' target='_blank' rel='noopener noreferrer ugc'>madapar.may</a> be if he took less drugs and accepted that he wasn't going to be on the go all day he might have lived a few more years .But it's all ifs and buts with this disease and who are we to tell someone with a disease we are not living with how to manage there medication.I think the covid epidemic didn't help as it stopped my dad going in to see is pd doctor so he couldn't really see what was going on and relied on phone <a href='http://calls.in' target='_blank' rel='noopener noreferrer ugc'>calls.in</a> the end my dad started having psychotic behaviour and hallucinations caused by the long effects of taking madapar and supportive drugs which led him on a downward spiral.

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