Parkinson's Disease Tulip


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Old 06-04-2015, 05:48 AM #321
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I tried the Theracycle with my father about a year and a half ago. Nothing notable happened with his tremors, so we ended up returning it.

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Originally Posted by Conductor71 View Post
I know this is nothing really new and have searched the archives here, I just wondered if there is any further research substantiating these claims?

There seems to be yet another poster child for bicycling and symptom control/progression, at 23andMe:

"When I was first diagnosed, I felt like I was on an icy slope with no axe to arrest the progression of the disease. Through a series of happy coincidences, I learned about the work of neuroscientist Jay Alberts at the Cleveland Clinic , pedalingforparkinsons.org. I began cycling at 80-90 rpms 4-5 times/week for at least an hour, generally 1.5-4 hours. Within less than a month nearly all of my symptoms disappeared, so much so that my doctor told me that if he didn't know I had PD, he wouldn't know. I still take 6 mg of ReQuip XL (down from 8) and 1 mg of Azilect, but the changes happened when I started the forced pace cycling. It is MOST important to pedal at 80-90 rpms. We don't know why, but it is working for me."


This clearly supports the original claim that patients must go into a "zone" where they nearly double the normal PD cycling pace. I have some questions I'm hoping some will be able to answer:

-Is there a "program" devised based on this research? Something that was designed by the doctors involved in the research that we can all use as a basis?

-How do we know what kind of bike to use? Upright or recumbent? Can it be stationary?

-It may not be proven to slow progression, but even by improving meds in us...that is a huge benefit! It counteracts the notion that we have to layer more and more meds on to get extension, avoid dyskinesias, etc.

-Why don't insurance companies either cover expense of bicycles just as they would our meds each month?

-Why don't more doctors publicize this? I am outraged that I have never had one doctor suggest that exercise is of paramount importance for us.

-Finally, how does one exercise regularly like this when the foot cramps up...primarily during exercise.....!!!! This was my first inkling that I had more than just Essential Tremor; my foot would cramp during exercise. I find that Sinemet helps some but has never been foolproof. I could just scream that I can't really do much sustained exercise any more. My doctor's response is to just offer Baclofen! Yeah, I want to go on muscle relaxers in order to exercise...like meds don't makes us sleepy enough. Is anyone else having this problem?

I get so furious when I realize how little our insurance companies do to either keep us well or to improve our health! They want to keep us sick and dependent on meds because it keeps their little industry cycle humming with profit payoffs for all involved. Ugh!

Thanks! Any further info is appreciated, but I would especially like to know how to get past the foot dystonia during exercise.

Laura
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Old 06-04-2015, 06:36 PM #322
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Forced pace cycling does not refer to the Theracycle. It can be done on a regular bike as long as the PwP keeps the rpm at 80-90 three hours per week.
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Old 06-07-2015, 09:15 AM #323
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Quote:
Originally Posted by Nan Cyclist View Post
Forced pace cycling does not refer to the Theracycle. It can be done on a regular bike as long as the PwP keeps the rpm at 80-90 three hours per week.
While forced-pace cycling does not exclusively refer to the Theracycle, it was the equipment used during the the Mayo clinic study:

http://www.theracycle.com/articles/p...ike-study.aspx

I was just sharing my father's experience; that does not mean it won't help others.
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Old 06-25-2015, 10:05 AM #324
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For months I've been having increasingly painful issues with IBS. Despite cycling, eating well, etc. nothing has helped. The belly pain takes out about four hours each day and precludes me from going out in the evening.

A couple of days ago a PT friend was over for dinner and I mentioned this issue. She said she had had the same problem and discovered that camomile tea with ginger solved it. I couldn't find any combo of camomile and ginger, so yesterday I bought fresh camomile and raw ginger. I sliced two circles from the ginger and put them in the pot with the camomile bag. When it had steeped, I poured myself a cup and carried on. Two hours later I realized I had missed my start time for the bellyache. I kept sipping and had no bloating, pain or stomach ache for the whole evening. I slept through the night and here I am this morning still smiling.

Obviously, I'll monitor this over time and report back, but if this is a game changer, I'll be a most happy camper! Please report if you try it.
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Old 06-26-2015, 11:33 AM #325
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Just checking in...

I have the "vintage Exercycle" and am loving it. 1932 design, with moving seat and handle bars, in addition to pedaling.

In my 20's & 30's I was an avid cyclist and would cover century (100 mile) rides for fun. Hills, hill climb, long distance cycling. I would get into the zone not even aware of my feet and just go. Toe straps so I could alternate pushing down or pulling up on the pedals to use different muscles. Typically 90 rpm speed.

The Exercycle has two speeds... slow (about 60 rpm) and fast (110 rpm, are they kidding?). My son, who doesn't own a car and cycles everywhere including to hit races commented that fast is near impossible, even for him.

Thankfully my exercycle has the optional PEP meter. So I can set up a 45 minute ride, 30 second duty cycle, and set level to "3". After five minutes I'm at 150 pbm (90% of target heart rate) and can keep in there with that 30 on/30 off duty cycle. Intense workout. When I stop, I can not walk. I need a few minutes of rubber legs to be steady again. Having a green light, meter to peg out, and the timer all help in my motivation to keep riding the full time. It is psychological if I am ready to quite.... meter says 8 minutes left... green light comes on and I GO like crazy for 30 seconds, knowing I get to coast next thirty.... then only 7 minutes to go....

Catch is initially, starting with shorter times and load levels, there wasn't much benefit. It was keeping on it for 3x a week, with interest 45 minute workouts that I feel much better after three months. It is like I burn up my dopamine riding, have 30 minutes after the ride of chicken legs, but next four hours are tremor free. So I can get other things, like machining done.

Couple this with stretch, mild work out, and weekly Parkinsons Movement classes and I am feeling great! So when I riding the exercycle I think back to my favorite rides in California, Europe, Ireland, and New Zealand. Yes, even made it up the switch backs at Cliffs of Moher.

I'd love a three wheel catrike bicycle, but for the time being the Exercycle is helping.
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Old 07-07-2015, 10:40 AM #326
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This time next week I'll be on my way to Iowa to ride in my fifth RAGBRAI, from the Missouri to the Mississippi in a week. The ride starts in Sioux City on Sunday, July 19. Happily, I'll be riding stoker on a tandem this time. I've been working out on a daily basis, generally alternating distance with hill climbs. Yesterday was 41.6 miles and my computer registered 88.4 degrees when I got home. 3 liters of water and I still drank all afternoon. A couple of days ago it was 41 miles and over 90 degrees. I'm constantly surprised at how well I feel during these rides. I stop at one point to take my pill and about 15 or 20 minutes later as I'm riding along, I realize that I feel fine again.

My drink of ginger tea is proving to be a godsend. No more IBS problems. No more constipation, for now at least.

It sounds like the YMCA in Marquette, MI is going to start a PFP class. News like that makes my day.
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Old 07-08-2015, 07:45 AM #327
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Quote:
Originally Posted by Nan Cyclist View Post
This time next week I'll be on my way to Iowa to ride in my fifth RAGBRAI, from the Missouri to the Mississippi in a week. The ride starts in Sioux City on Sunday, July 19. Happily, I'll be riding stoker on a tandem this time. I've been working out on a daily basis, generally alternating distance with hill climbs. Yesterday was 41.6 miles and my computer registered 88.4 degrees when I got home. 3 liters of water and I still drank all afternoon. A couple of days ago it was 41 miles and over 90 degrees. I'm constantly surprised at how well I feel during these rides. I stop at one point to take my pill and about 15 or 20 minutes later as I'm riding along, I realize that I feel fine again.

My drink of ginger tea is proving to be a godsend. No more IBS problems. No more constipation, for now at least.

It sounds like the YMCA in Marquette, MI is going to start a PFP class. News like that makes my day.
have you tried powdered ginger capsules, i bought some awhile back, i try everything it seems to see if it can extend my ON TIME (not for IBS), it was the NATURE'S WAY brand.
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Old 07-08-2015, 01:16 PM #328
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Did they work for you? I used them many years ago for airsickness and they were great. The tea is still working really well. I'm going to have it in one of my water bottles on RAGBRAI.
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Old 07-08-2015, 03:22 PM #329
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Quote:
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Did they work for you? I used them many years ago for airsickness and they were great. The tea is still working really well. I'm going to have it in one of my water bottles on RAGBRAI.
they have no affect on anything.
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Old 07-11-2015, 09:48 AM #330
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Tues morning I am starting the long trip to Iowa to ride across the state again in RAGBRAI, along with 15,000 other intrepid cyclists. As part of the Pedaling for Parkinson's group, we will be giving a talk on 7/20/15 at FortDodge. The meeting location and contact information are below. This will be a "fireside chat" format with the 7 pwps in our group sharing our experiences and answering questions. I will also have copies of my book for sale. I would love to meet some of you!
• Friendship Haven
420 Kenyon Rd
Fort Dodge, Iowa 50501 Julie Thorson (President) Phone: (515) 573-6003
in Tompkins Celebration Center
Scheduled Talk at 6:00PM:
Where: Tompkins Celebration Center on Friendship Haven’s campus (presentation will be held in a conference room)
When: July 20, 2015 at 6:30PM
Contact: Steve Ehrhardt
E-mail: steve.ehrhardt@friendshiphaven.org
Phone: (712) 722-8325
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