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

Nan Cyclist 03-25-2010 09:05 PM

Tremorgrrrl and Jean B., Your posts are great. Tremor, you must kick butt going up hills! I'm so glad to hear of others who have that experience of losing their symptoms when they get on the bike.

Re setting up the cycling program. I put a few ideas on my webpage, accessible through pedalingforparkinsons.org That site also has my personal email address. If you want Jay's research poster and/or paper, please send me an email using your private address as the files are too big to post on this website. I'll be happy to send them to anyone. I am working with a local hospital to set up a cycling program as I believe I have mentioned before. It should be ready to pilot by the end of May. At that time the hospital will have developed a full packet of protocols, patient releases, medical forms and ways of keeping track of patients' progress. They are working with Jay to develop these materials. I expect that we will work through a pilot and make adjustments before making the whole packet readily available. In the meantime, if you read through the short checklist on my website, you can get started identifying significant connections you'll need.

Jean, re rpm. You can get a cheap cateye or other computer at any cycleshop and even ask them to install it for you. It will record distance, time, rpm, mph, avg speed, and maybe a couple of other things depending on your model. It is helpful to know your rpm. You can also get heart rate monitors on line to see if you are staying in the recommended zone of 60-80% of your maximum heart rate.

jeanb 03-26-2010 10:51 AM

Quote:

Originally Posted by Nan Cyclist (Post 636874)

Jean, re rpm. You can get a cheap cateye or other computer at any cycleshop and even ask them to install it for you. It will record distance, time, rpm, mph, avg speed, and maybe a couple of other things depending on your model. It is helpful to know your rpm. You can also get heart rate monitors on line to see if you are staying in the recommended zone of 60-80% of your maximum heart rate.

Nan... HMMM I DO have a cateye computer installed.... LOL maybe rpm is there aalready?? I'll look at it more carefully.
:rolleyes:
thanks

Nan Cyclist 03-26-2010 11:42 AM

On the underside upper left corner of the cateye there is a little button that will toggle between mph and rpm.

jeanb 03-26-2010 03:29 PM

not my model
 
Quote:

Originally Posted by Nan Cyclist (Post 637083)
On the underside upper left corner of the cateye there is a little button that will toggle between mph and rpm.

well rats - my cateye does not have rpm as a function! :( But thanks for the tip - maybe my local bike shop has one and can install it for me... I'll check.

thanks, Nan

reganriley 03-30-2010 06:44 PM

cycling
 
nan, i have left several notes for you on different sites...i have no other way to reach you...although i could probably do so through jay alberts. i am very interested in speaking with you about setting up a program locally. contact me here or on 23andme...thanks


Quote:

Originally Posted by Nan Cyclist (Post 633476)
I note that quite a few people are keeping track of this thread and I wonder what experiences individuals are having. Are you trying cycling? If so, do you see or feel any difference in the way you either move or think, or both? I found that over time my cognitive functions returned, which thrilled me even more than having my body nearly back to normal. If you're cycling, are you going at the 80-90 rpm for at least 40 minutes three times per week or are you going more or less? What is the hardest and easiest part of the cycling for you? What do you think would help you out? Feel free to add anything else you would like.

My experiences with forced pace cycling are great, but it would be fantastic if these experiences or something close to them were replicated by lots of others. If you're shy about responding to the group, please contact me through the private message forum. I'll compile answers anonymously and report back to the forum.

Thanks.


Nan Cyclist 03-30-2010 08:21 PM

Hi Regan,

I'll be more than happy to help anyone set up a tandem program such as the one we're working on here in Seattle. My experience in setting up programs leads me to be cautious about disseminating a model until a pilot has been run for a while to work out the bugs. I'm working with a local hospital here to set up the pilot, which will begin in late May. Once we're clear that we have working systems in place, I expect we'll create a "How To" booklet that will include medical forms, permissions, clearances, etc. as well as the basic information on which steps to take, presumably in a reasonable order, or at least one that worked for us. We're working with Jay to develop the forms. I have also written an article for our bike shop newsletter, which I submitted today. When they confirm that the article passes muster, I'll post it here.

RLSmi 03-31-2010 01:46 PM

Currently visiting Seattle
 
Quote:

Originally Posted by Nan Cyclist (Post 638572)
Hi Regan,

I'll be more than happy to help anyone set up a tandem program such as the one we're working on here in Seattle. My experience in setting up programs leads me to be cautious about disseminating a model until a pilot has been run for a while to work out the bugs. I'm working with a local hospital here to set up the pilot, which will begin in late May. Once we're clear that we have working systems in place, I expect we'll create a "How To" booklet that will include medical forms, permissions, clearances, etc. as well as the basic information on which steps to take, presumably in a reasonable order, or at least one that worked for us. We're working with Jay to develop the forms. I have also written an article for our bike shop newsletter, which I submitted today. When they confirm that the article passes muster, I'll post it here.

Nan, we are currently visiting Seattle where one of my sons and his family live in the Ballard neighborhood.
I am not currently doing regular cycling, but am interested in giving it a try. We have a gym membership back home, but our workouts are now seldom and irregular. I rarely exceed 80 rpm on the stationary cycle, even at low resistance, and never more than 30 minutes at a time. Your experience encourages me to push it up in regularity, speed and duration.
I woud be delighted to contact you while we are here. I will send my e-mail addy to the one on your web site.
Robert

Nan Cyclist 03-31-2010 03:57 PM

I just got home from my ride and will be here the rest of the day. I left my phone number on the private message you sent me. (My daughter and son-in-law live in Ballard.)

Nan Cyclist 04-02-2010 01:06 AM

FYI, Jay Alberts was on the ABC Evening News tonight, April 1. You can see the story by googling ABC, put Parkinson's in the Search box, and selecting the story on April 1.

There was also a story in the NY Times yesterday about cycling and advanced PD patients

http://www.nytimes.com/2010/04/01/he...arkinsons.html

Conductor71 04-06-2010 10:02 AM

Guidance on choosing a stationary bike
 
After reading the immunology/vaccine theory of Gendelman at U Nebraska, I wonder if the symptom improvement is related to the anti-inflammatory benefit of exercise?

-I wonder if there are other key aspects to Dr. Albert's study especially in design of the bike. Nan mentioned that she think it easier to maintain 80-90 RPMs on an upright stationary; I'd agree there...I find it much easier to slack on a recumbent. Is the type of resistance important? There are a few types:

* Direct Tension - offers manual adjustment of resistance
* Fly wheels - similar to a regular bicycle peddling motion
* Air - resistance is achieved by peddling against the flow of air from a fan blade
* Magnetic Frictionless Resistance - the most sophisticated type of resistance, allows for more variation in level of workout

I'm thinking flywheel would be best as it is what it seems Dr. Jay first noted the difference on with PWP. Guessing that Magnetic Frictionless next best.

Am I splitting hairs on this? Looking at the Theracycle site makes it more confusing because they market a bike with movable handle bar for upper body workout and a person in a wheelchair --- I don't think this is what was used in the Cleveland Clinic studies?

My goal is to see that I can get to the force pace range for 30 minutes and
overcome foot dystonia. I would love to start cycling outside but won't do it for saftey issues- nothing like a foot cramp and a wipe out to ruin your day


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