donheff

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?

missinglink

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.

canklecat

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.

donheff

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.

qcpmsame 

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.

Bill

donheff

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.

qcpmsame 

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.

Bill

donheff

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.

Carbonfiberboy 

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/

qcpmsame 

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

WonderMonkey

PLEASE look up Rock Steady Boxing (link below). I have seen some incredible things happen from this program. Nothing cured, of course, but a slowing of increased severity of the symptoms, and even those that have had great difficulties standing now able to walk. Look at the link below, study what it's all about, then please look up a facility near you that does this.

https://www.rocksteadyboxing.org/

donheff

Thanks. I read about Rock Steady Boxing and could not find any classes in the DC area. I have joined a three times weekly Zoom session coached by a guy who was on the board of the organization. It is excellent and more convenient than a physical class.

WonderMonkey

I know it's difficult to find in-person classes during Covid. Our local gym hasn't started them back up again either.

gash44

Don I am 68 and was diagnosed with Parkinson's in March of this year I told my doctor I love to ride and he said to go head and ride as much as I want to. I know there will come a time when I will not be able to so I am doing it while I still can which I believe will be for a number of years yet.

donheff

I forgot to follow-up after I started meds in late February. My MDS started me on a low dose of carbidopa/levidopa (Sinemet). So far so good. The drugs eliminated my mild tremor and improved stiffness, which makes walking easier. Surprisingly, they also seem to have improved a perception issue which made crossing a long bridge by bike a bit uncomfortable. I regularly ride across a quarter mile long bridge and have found it hard to hold a line on the right side near the rail. That improved significantly after I started the meds. I have monitored my riding and, so far, haven't seen any limitations I can attribute to the PD. Hills have gotten to be a PITA over the last several years, but I suspect that is just age. I keep my eye on ebike developments in case my energy begins to flag more significantly.

Carbonfiberboy 

Doubleplus good. When I was working in the National Parks, I had to walk on a 3' diameter 150' long log over a swift river. The trick was to focus totally on the log and ignore the river. One would of course have died if one had fallen in. Easier said than done, but it worked.

qcpmsame 

I take sinemet, Amantadine and entacapone for my PD symptoms now. When I am cycling regularly the dyskinesia and dystonia are much lessened, I could easily miss a dosage. But, I try to keep a strict schedule to stay disciplined.

The new neurologist wanted me on Rytary, a controlled release formula of levadopa/carbodopa, to lessen the off periods that were increasing and causing severe leg spasms. The cost was astronomical, and insurance did not cover it at all. The entacapone is a COMT inhibitor that does much the same thing. It has worked, so far.

I have my second in—person appointment on Monday, new neuro seems to be a good physician, and human being as well. I had two that were truly questionable in that area. I seem to be in period of disease progression since having the coronary ablation surgery in Oct ‘19, kind of a mental downer.

Hopefully the upcoming retirement will allow more consistent cycling and longer outings.

Bill