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Riding with Parkinson's Disease

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Riding with Parkinson's Disease

Old 12-27-20, 07:33 AM
  #1  
donheff
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Riding with Parkinson's Disease

I'm curious if anyone out there has any lessons learned from riding with Parkinson's. I'm 72 and was diagnosed in October. I have a mild resting tremor in my right hand and my other cluster of symptoms is also very mild. I am hoping to continue riding for many years but realize that is a bit of a crap shoot. So far I haven't needed to start Parkinson's meds. That is one of the things I worry most about since some of them can cause dizziness. I already have mild orthostatic hypotension (common with PD). It can make me light headed occasionally in the evening but never (so far) on the bike. Anyone out there have any experience or suggestions?
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Old 12-28-20, 12:37 PM
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Don, about the only thing I can offer is the experience from a long time friend of mine. He's been on the 'beginner's' dose of meds for about 18 months with no dizziness or other side effects. I'm not certain which med he's using, although he's mentioned dopamine.

He claims to have a mild tremor at times, as well as what he describes as scuffing/dragging the bottom of his feet occasionally when walking. I didn't notice either last time I was around him, but it's been a while.
His doctor stressed the need to keep his legs in action, and strongly suggested a stationary bike. He purchased one about 4 months ago and believes it's helping with the issues when walking.

Hope this helps.
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Old 12-28-20, 11:38 PM
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After watching the conditions of my uncle, and mom (I was mom's caregiver during her final decade), if I also develop Parkinson's I'll probably quit riding outdoors. I'll switch to indoor trainer only, or walking/jogging outside.

Unfortunately one of the common factors I noticed with both my uncle and mom was a loss of ability to self-regulate or recognize their own deterioration. And mom didn't believe me, her doctors, nurses, visiting aides or physical therapists when they advised less risky activities or being sure to have a companion along when she went out.

That was also common with folks I looked after in nursing when I was assigned to patients with Parkinson's and various forms of dementia. They completely lose any sense of self regulation or awareness of limitations. Or try to overcompensate for those unfortunate disabilities.

So I'm hoping I'd have a more realistic sense of what I'd be capable of doing if that happens to me. But having observed how various forms of dementia and neurological impairments develop, I'm not sure I'd actually be able to acknowledge any limitations.
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Old 12-29-20, 08:12 AM
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Originally Posted by canklecat View Post
After watching the conditions of my uncle, and mom (I was mom's caregiver during her final decade), if I also develop Parkinson's I'll probably quit riding outdoors. I'll switch to indoor trainer only, or walking/jogging outside.

Unfortunately one of the common factors I noticed with both my uncle and mom was a loss of ability to self-regulate or recognize their own deterioration. And mom didn't believe me, her doctors, nurses, visiting aides or physical therapists when they advised less risky activities or being sure to have a companion along when she went out.

That was also common with folks I looked after in nursing when I was assigned to patients with Parkinson's and various forms of dementia. They completely lose any sense of self regulation or awareness of limitations. Or try to overcompensate for those unfortunate disabilities.

So I'm hoping I'd have a more realistic sense of what I'd be capable of doing if that happens to me. But having observed how various forms of dementia and neurological impairments develop, I'm not sure I'd actually be able to acknowledge any limitations.
Thanks. I am aware of the potential cognitive issues. So far I haven't had any (or haven't noticed them) My biggest concern with cognitive issues is anything concerning our finances. I have gone over the potential for sudden cognitive/behavioral changes with my wife and son and they are prepared to seize control from me if I go south. I am also attentive to balance/motion issues which so far have been very slight. My wife almost always rides with me and is paying close attention. She will intervene on both riding and driving if she notices significant deficits before I do. I am still optimistic that I have several good riding years ahead, including some international trips.

On the side of your cautionary concerns, so far there are no other forum members with PD replying. PD is fairly common so that tells me there are probably less than I hoped for riding.
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Old 01-20-21, 08:47 PM
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Been riding with a PD diagnosis since 2014, and a firm believer that my cycling works better than meds, in many ways. My balance is better when I am getting in regular rides, 4-6 times weekly (that includes indoor trainer stand sessions when ifs too cold (Reynaud's Syndrome came with my particular brand of PD.)

Best pointer I can offer is to keep a cyclist diary, I like Joe Friel's, "Cyclist Diary" (catchy huh?), with some changes to suit my personal needs. I track my nutrition, resting, average, and max heart rates, as well as how I feel/felt, A.M. weight and blood pressure, as well as the usual mileage and time riding. When I have a physicians' appointment I have everything in front of me and them. With PD and having had ablation surgery for AFib, its nice to be able to show the doctor any trends or episodes.

Second offering, get a good smart watch. I use an Apple Watch 4, it does everything I need for cardiology and cycling information. I would like to have the Blood O2 feature that the newest edition offers. Several other brands are great, Suunto, the various Android offerings can do quite well. I have apps loaded to the iPhone and watch to sync everything up. there are medication dose tracking apps for these watches and phones, just browse the applicable OS store for your watch or phone. One feature that is becoming a standard is fall detection, for both phones and watches. My wife would receive a phone call with my location and that I may have fallen, an accelerometer can sense the possible fall, and after a predetermined time it sends the alert, and many will automatically call the GPS determined 911 center. With the balance issues many Parkies have, myself included, this is a reassuring thing to have.

Last thing, I have ridden with a RoadID since 2012, (I have other, conditions that pre-date my PD.) They offer a basic information and contact number version, and a subscription version with what medical records and information you chose to provide to their cloud storage, the ID plate has your PIN number and the toll-free number for medical first responders to access your data. My doctors all have told me they wish all their patients had one, and wore it regularly. I won't leave home without mine on. Still have the nylon web, velcro secured type, and the latest for my Apple Watch band.

If you have not visited Davis Phinney Foundation's website, I highly recommend doing so, and requesting their "Sharing The Victory" handbook (FREE!.) Next to finding a good movement specialist neurologist physicians, its my go to for information about anything PD.

Best wishes on managing your PD, its a one day at a time, and one foot in front of the other, kind of disease that you have to deal with every minute of the day. Feel free to PM me anytime if you want to swap ideas or just share about being part of the Parkie Family.

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Old 01-21-21, 06:44 AM
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Thanks qcpmsame. It's good to hear you have been able to keep riding. I found the Davis Phinney Foundation right after I got diagnosed and both downloaded and got a hard copy of their book -- as you say, it is an excellent resource. I saw my motion disorder specialist at the beginning of the month and she started me on a low dose of carbidopa/levodopa, I was sure I needed to deal with the tremor yet but she thought it would help with the stiffness in my back that was interfering with walking. She was right about that. I have now added 2 mile walks to my routine (before a mile was about it). No noticeable side effects from the meds. I hope to stay in there with you for many years.
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Old 01-24-21, 08:33 PM
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Originally Posted by donheff View Post
Thanks qcpmsame. It's good to hear you have been able to keep riding. I found the Davis Phinney Foundation right after I got diagnosed and both downloaded and got a hard copy of their book -- as you say, it is an excellent resource. I saw my motion disorder specialist at the beginning of the month and she started me on a low dose of carbidopa/levodopa, I was sure I needed to deal with the tremor yet but she thought it would help with the stiffness in my back that was interfering with walking. She was right about that. I have now added 2 mile walks to my routine (before a mile was about it). No noticeable side effects from the meds. I hope to stay in there with you for many years.
Sounds like you are on top of things, I am taking Sinemet, Amantadine and Rasagaline for tremors, Dystonia and swallowing issues. And, a nice walk usually helps the legs to settle down and stop jerking about. The voice softening can be frustrating, but it is something I just work on all the time. Stiffness in the joints is one thing cycling and walks do help deal with quite well.

Be looking for your posts in the forums.

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Old 01-25-21, 06:40 AM
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Originally Posted by qcpmsame View Post
The voice softening can be frustrating, but it is something I just work on all the time.

Bill
My MDS recommended LSVT BIG and LSVT LOUD. I was skeptical about LOUD - 4 sessions for 4 weeks on voice, what could you do? But, I have been impressed. My voice is much improved and I am even enjoying singing which had deteriorated to a croak. I have a significant glottal "bow" (the chords didn't close) separate from the PD issues so I may get more out of the training than some others.
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Old 01-25-21, 11:23 AM
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I see the Davis Phinney foundation mentioned, but no mention of the tandem cycling therapy which they pioneered: stoking a tandem. It's called "forced exercise" which doesn't sound all that great, but it's fun and it works: One needs to find a willing captain. There are organized tandem clubs which work with blind stokers and Parkinson's riders, but I don't have any links. Anyway:
https://www.researchgate.net/publica...'s_Disease

There's also some evidence that CoQ10 can be helpful:
https://www.sciencedirect.com/scienc...2544399500040B (includes link to download free PDF)
https://www.researchgate.net/publica...nity_Residents
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5807419/
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Old 01-30-21, 06:28 PM
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Originally Posted by donheff View Post
My MDS recommended LSVT BIG and LSVT LOUD. I was skeptical about LOUD - 4 sessions for 4 weeks on voice, what could you do? But, I have been impressed. My voice is much improved and I am even enjoying singing which had deteriorated to a croak. I have a significant glottal "bow" (the chords didn't close) separate from the PD issues so I may get more out of the training than some others.
The last webinar I participated in was on vocal softening and therapies, interesting gentleman that was the guest speaker for the event. He went into the LSVT therapies and the use of physical actions as coordinators for the actions. I plan to rewatch it through the video library at DPF.org.

[QUOTE=Carbonfiberboy;21894115]I see the Davis Phinney foundation mentioned, but no mention of the tandem cycling therapy which they pioneered: stoking a tandem. It's called "forced exercise" which doesn't sound all that great, but it's fun and it works: One needs to find a willing captain. There are organized tandem clubs which work with blind stokers and Parkinson's riders, but I don't have any links. Anyway:
https://www.researchgate.net/publica...'s_Disease

I was in a club, back in the 70s, that had two tandems we used for facilitating blind riders to participate in cycling. I've wondered what happened to the Atala tandems we used, one was stored in our shed for two years after the program stopped, then it was picked up by a club officer. Club no longer exists, and few members are still in the area.

Lots of different HIIT activities are being used as therapy methods by Parkinson's groups. There was a weight lifting group for a short while here, but not much ever came of the group. I have tried to find a support group for PD locally, but there is not one I can locate, nor did my first neurologist now of one. Shadow boxing and related workouts have been popular lately, and dancing was big before the COVID-19 lockdowns and illness stopped everything.

My cycling does make a notable difference in my symptoms for balance and tremors as well as the leg twitching dystonia. It does need to be at least a moderate to high effort, spinning high cadence and higher gears, and also over at least an hour on the roads or a trainer stand.

Bill
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