NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)
-   Parkinson's Disease (https://www.neurotalk.org/parkinson-s-disease/)
-   -   Pedaling for Parkinson's...and dystonia (https://www.neurotalk.org/parkinson-s-disease/114042-pedaling-parkinsons-dystonia.html)

Peony 03-20-2011 12:13 PM

Hi, Soccertese. Not sure how to interpret what you said in relation to what I said. What harm do you mean? I've had the joint problem for many years & have given various members of the medical community many opportunities to help me with it, with the end result being: no improvement, nada, zip. How do you know when you've found the best doctor? I've kind of given up on them & moved on. I see no harm in biking or other exercise as long as it doesn't aggravate or cause a problem. That's why I'm looking for a way to resolve the problem I seem to have with the recumbent bike. When using an upright bike, I don't seem to have the problem. Exercise seems to be the one thing that can help anyone, including those with PD, without the harmful side effects of meds or DBS, so why not?

soccertese 03-20-2011 02:11 PM

Quote:

Originally Posted by Peony (Post 754651)
Hi, Soccertese. Not sure how to interpret what you said in relation to what I said. What harm do you mean? I've had the joint problem for many years & have given various members of the medical community many opportunities to help me with it, with the end result being: no improvement, nada, zip. How do you know when you've found the best doctor? I've kind of given up on them & moved on. I see no harm in biking or other exercise as long as it doesn't aggravate or cause a problem. That's why I'm looking for a way to resolve the problem I seem to have with the recumbent bike. When using an upright bike, I don't seem to have the problem. Exercise seems to be the one thing that can help anyone, including those with PD, without the harmful side effects of meds or DBS, so why not?

i was speaking in generalities - offering common sense. do what you want. sorry i bothered to respond.
as far as finding the "right doctor", i don't live near you, that's your challenge. my point is i found "a right doctor" and they weren't on this message board.

i have nothing against exercise, just laypersons offering advice that could result in harm.

Peony 03-23-2011 10:24 AM

Nan Cyclist, I just want to say again how much I appreciate your very helpful story & tips, which I intend to act on, and the inspiration you provide to me and others. Your posts are a good example of exactly the type of thing I hope to find on this forum--people with PD sharing information, tips, hope, personal experiences that may be helpful. I do a lot of exercise--dance class, dance performance group for PD, aquatics class, yoga, dog walking, etc. But I really believe I need more strenuous & more frequent aerobics, and stationary biking seems to be ideal for that. I'll keep on trying to work out the best way for me to accomplish it, but meantime, godspeed!

Nan Cyclist 03-23-2011 11:40 AM

Thanks Peony. Soccertese, I applaud your dedication to research over hearsay. I don't know if you had the opportunity to attend the HOPE conference in Seattle last November and to hear Dr. Alberts give the keynote speech. http://www.viddler.com/explore/nwpark/videos/13/
Happily the speech is archived at the above url. It's an hour and unfortunately the videographer didn't show the slides, but Jay explains them quite clearly. I hope this gives more credibility to what I've been writing about.

For those of you who live near Grand Haven, MI, I'll be giving a couple of talks there on April 18th. I'll post the specifics when they're in place.

soccertese 03-23-2011 12:59 PM

Quote:

Originally Posted by Nan Cyclist (Post 755601)
Thanks Peony. Soccertese, I applaud your dedication to research over hearsay. I don't know if you had the opportunity to attend the HOPE conference in Seattle last November and to hear Dr. Alberts give the keynote speech. http://www.viddler.com/explore/nwpark/videos/13/
Happily the speech is archived at the above url. It's an hour and unfortunately the videographer didn't show the slides, but Jay explains them quite clearly. I hope this gives more credibility to what I've been writing about.

For those of you who live near Grand Haven, MI, I'll be giving a couple of talks there on April 18th. I'll post the specifics when they're in place.

i read his paper. i listened to his presentation based on your link. i'm not convinced and will withhold judgement until he publishes his 2nd paper for peer review. exercise is good for general health benefits, no doubt about that. but basically if it seems too good to be true, it often is.

Nan Cyclist 03-26-2011 11:26 AM

Yesterday I climbed Mt. Si, 4 miles each way with an elevation gain of 4,000 ft. The day before I climbed to Lake 22, 2.7 miles each way with an elevation gain of 1,500 ft. The last mile of each hike was in the snow. There is no way I would have even thought about attempting such climbs without the Pedaling for Parkinson's program. I would rather be living each day to my greatest capacity than waiting for a paper to confirm my lived experience. Everyone chooses.

Nan Cyclist 04-10-2011 02:36 PM

I'm sure this isn't the right place to post this, but I don't know how to start a new thread. We just learned that one of my brothers has ALS. That makes half of our family with either ALS or Parkinson's. My dad lost his ALS battle in 1972. I feel like I've been socked in the gut. What can the odds be that 3 out of 6 would be so afflicted?

lindylanka 04-10-2011 10:05 PM

Nan Cyclist,
That is a tough one to deal with. There is a lot more to be learned about these conditions, and the people researching them do not understand our haste for them to find ways to help. When a family is hard hit like yours the urgency is made much more real, especially with ALS.

I guess you probably know that there is an active ALS group here at Neurotalk.....

To start a new thread just look towards the top of the page that lists the PD forum threads, just below the three sub-forums, on the left there is a button for new thread, click it and you are there.....

Share as much love as you can, it is the thing that really does help.

Best Wishes
Lindy

imark3000 04-11-2011 12:37 AM

Quote:

Originally Posted by Nan Cyclist (Post 761022)
I'm sure this isn't the right place to post this, but I don't know how to start a new thread. We just learned that one of my brothers has ALS. That makes half of our family with either ALS or Parkinson's. My dad lost his ALS battle in 1972. I feel like I've been socked in the gut. What can the odds be that 3 out of 6 would be so afflicted?

Nan,
I am sorry to hear the news. I know it is very hard when a difficult illness hits one who is dear to us. Life is not fair but human spirit is strong and will fight on to the bitter end.
Imad

Nan Cyclist 05-14-2011 10:52 PM

http://www.keepmemoryalive.org/About...ngFall2010.pdf

The Lou Ruvo memory center recently opened in Las Vegas. Dr Alberts gave one of the keynote speeches, which is the link above, starting on p 12.
Further encouragement to cycle if you're able.


All times are GMT -5. The time now is 05:30 AM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.