chipmunk32

62 and recently diagnosed with Parkinson's. Love the bike, the pace line, the centuries and everything else about riding. I am still riding hard but very concerned about being a danger to others in the pace line. Dropped my water bottle the other day with 18 riders behind and moving fast. No one went down. This time. Very concerned. I read everything I can about cycling and PD but would like to hear from those who are still riding. I have become compulsive about riding because I hear the clock ticking. Any insights would be much appreciated.

Bummed out in Davis

apesrunner58

Sorry to hear that you have Parkinson's. I guy from my area is still riding with Parkinson's. I hear that riding is very good to reduce the effect of Parkinson's. Here is the article about the guy in my area Orange Village man survives 900-mile bicycle trek across Alaska | cleveland.com

chipmunk32

Thank you for that link and I enjoyed it very much! I need inspiring stories like that because it seems to be such a downhill slide. It seems trivial but stories like that mean so much at this point in my life. For those of us where cycling has meant so much to us will never understand. Personally, some of the best hard core cyclists are those in the over 50 crowd. Thanks again for the link.

cobolman

Here's a more recent story about the same person who was diagnosed in 2003. Heights rider reaches for the Rockies - The Heights Observer

cobolman

Here's his blog. Doug?s Blog | Doug's Wild Ride

chipmunk32

Wow. I may have to trade the speed work for long distance but I am willing to do anything to stay on the bike. I am very fortunate to have the support of my wife as she sees the difference cycling make with my symptoms.

John E

I have walked a millimeter in your shoes, in the sense that I have always avoided pacelines and tightly packed groups because I am a natural-born klutz who could not even balance a bike until age 12. I have never had much speed, either, although I have always been able to climb pretty decently. There is plenty of joy in solo or spread-out small group riding. I, too, believe cycling is beneficial for you.

You probably know Davis Phinney's story:

Davis Phinney - Wikipedia, the free encyclopedia
Davis Phinney Foundation
Parkinson's Disease and DBS Therapy | Davis Phinney's Story - MedtronicDBS.com

Dudelsack 

I met a fellow on a Catrike who had moderate Parkinson's (the man, not the bike). He really liked his bike, and the three wheels gave him a lot of security. I'd think about it.

John E

The late, great Sheldon Brown had the same solution -- a Tadpole -- as his MS progressed.

Miami Biker

Hi. Don't know much about Parkinson's or biking come to think of it. Do know a young lady who rides in our group has Parkinson's and she's training for an Ironman. Yes, an Ironman. Have ridden with her just a little and she's very strong and dedicated.

Realize she's younger and perhaps there are clinical differences. All I do know she has everyone's admiration even if we don't really understand all things. Wishing you the best!

cafzali

There's actually lots of relatively recent research that shows Parkinson's patients actually "lose" much of the symptoms of the disease while cycling. I seem to recall there's more research to support this for Parkinson's than similar neurological or muscular-related diseases.

chipmunk32

I feel great but the shaking is intensified under stress and exercise. I had difficulty with returning the water bottle to the cage a second time so decided to start using a Camelback system. I should not take my hands after the bars at any rate and a dropped water bottle is just to dangerous for the riders behind. You are right...if I do not ride and ride hard I feel terrible, but when I do ride I feel "normal." Normal is a really great thing!

Murray Missile 

Can't answer about cycling and Parkinson's but my father, his father, his paternal grandmother and an uncle on his mother's side all had Parkinson's. So far all my siblings and I are free from any signs of it, I'll be 59 next month and my oldest sibling is 74. Stay as active as you can and best of luck.

chipmunk32

Thank you.

qcpmsame 

Just recently found out I have Parkinson's Disease, dealing with the various symptoms, such as balance and swallowing issues, is my biggest problem. The recommendations about Davis Phinney's website Davis Phinney Foundation and foundation, as well as the Michael J Fox Foundation https://www.michaeljfox.org/, both are good resources for those wanting to fight the disease's effects on us and using exercise to aide them. I've found that riding hard and long helps me to overcome many of the issues and get some relief from many of them. You don't have enough posts for a PM, but you can email me at whb-mdmb@att.net if you'd like and I'll be happy to share ideas and tips with you. Cycling is my lifeline and my stress release mechanism, hope it helps you as much as it does me.

Bill

Biker395 

According to the latest news reports, we can include Robin Williams on the list.

DiabloScott

I know this guy - his condition is Friedreich's Ataxia which is similar to Parkenson's... rode RAAM as part of a 4-man team.




I'll sign the papers right now - if I get Parkenson's, I'm buying a recumbent trike.

qcpmsame 

Apparently Robin's Parkinson's Disease was manifesting itself in some harsh manner and giving him a lot of pain along with some debilitating aspects. It can be mild and barely noticeable or it can be very debilitating. Michael Fox's case has severe tremors, as can be seen when he is being interviewed now. As the meds begin to wear off some of us have increasing symptoms. I guess Robin's severe depression and anxiety along with the aspects of PD were just too much, from what the latest press release form his wife said, today. Sad, very sad. Makes me glad mine is very, very mild right now and that it was apparently caught early.

Hopefully the OP isn't severely affected right now and his physicians are on top of things, I am trying to be very proactive with mine. End of my input, this about the needs of Chipmunk.

Bill

Artkansas 

I don't have Parkinson's, but found this film inspiring.

Riding with Larry

John E

I have been following Davis Phinney's story, including his brain implant, which evidently helped for several years. The good news is that we are learning more about MS, PD, and other neurological ailments every day.

Velo Dog

I have myasthenia gravis, not PD, but some of the early symptoms, at least, are similar, and I had similar concerns. I spent three months in the hospital in 2011, and came home in a wheelchair. The best my therapists could tell me was, "You MAY walk again."
I worked at it, and came up through a walker and cane to a nearly normal gait, a little limp when I get tired. I was off the bike for two years, but this summer found that I could ride fairly well once I got on (initially I had to lay the bike on the ground and step over it, then pick it up). I rode 100+ miles a week for years, and I'm hoping to ride my age one more time in spring, when I'll be 70. My first ride in June was 2.3 miles, all I could manage, but I'm picking away at it, up to 40 minutes twice a day (I go by time now, not speed--I'm even slower than I used to be...). I've thought about a recumbent trike, and ridden a couple I like, but I'm not there yet.
The point as it relates to you, though, is that I've come far farther than the docs or therapists told me I was likely to (I'm not criticizing them--they've worked their butts off to help me get where I am), and I'm still improving. Recognize your limitations, but don't give up

MinnMan

Yes, and it seemed that he feared its effect on his ability to cycle

Robin Williams feared Parkinson?s disease would stop him cycling and lead him to back addiction, says friend | News.com.au

the main story for him is surely depression, though

trackhub

Good thinking there.
The great Sheldon Brown was diagnosed late in life with a form of multiple sclerosis, which robbed him of his ability to balance.
He started riding a Greenspeed recumbent trike. I saw him ride it on several occasions, and he was able to move along at a respectable
speed. And, as he liked to put it, when he got to where he was going, he had a ready made easy chair.

Here he is, on his Greenspeed.

chipmunk32

Hi Velo Dog. Great story of determination. It is very easy to look on the dark side of things. My wife and I took my ******* down to the local police station just in case I have a real dark day. Robin Williams had such a day. Miss him much. I think it is easy to give in whenn the future looks so bleak. Stories like your help keep me centered!

qcpmsame 

Smart move, being proactive is a good choice. Best of luck with things, shoot me an email if you need to.

My biggest issues are with the swallowing troubles and the balance issues getting worse lately. I can't swallow well when riding and trying to get a drink while on the hoods or drops and my head is tilted back a bit, closing down the troublesome throat (esophageal spastisity) (sp?). Balance kind of speaks for itself, strangely riding balance isn't a problem now, its plain old walking and the dizziness when standing up. Just dealing with all the various symptoms needs a score card at times.

VDog, take care, that is another reason I love the gang here, the inspiration.

Bill