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11-09-2014, 11:23 AM | #301 | ||
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Yep... I live in Oakland Township, Michigan... Dad is not very physically capable of getting out easily for trying that type of exercise at a facility. It would be a major task, extremely difficult for both of us. If it were more easily accomplished, then of course I would be willing. This special bike is a pretty awesome machine. The one that we are contemplating purchasing has both pedals for hands as well as pedals for feet. 2 motors are on it, one for top & one for bottom. Some kind of cell is built in that senses muscle spasms and adjusts the speed accordingly. Right now, the ONLY exercise my father gets is standing up and transferring from one seat to another!!! The 80 - 90 rpms that are suggested for actual improvement in tremors is doable by this motorized bike. I do not think that he could get up to that speed without the additional assistance of a motor. Even with the motor, it may be difficult for him. I want to do for him anything that I am able to do that may actually help him with this awful debilitating disorder... Thank you for your concern about us and your timely response! The medication regimen that we are using does not seem to be producing excellent results, hard to know... that's why I am putting it out there and see if anyone might have ANY suggestions for us. On this blog, I read about MUCUNA powder, that it is actually a precursor to dopamine... I wonder if this "organic powder" may actually be of benefit to my dad????????? DON't KNOW what to think for sure!!!!!???????????? tyvm!
Beeks 3010 |
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11-11-2014, 11:17 PM | #302 | ||
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First I recommend that you make sure your dad is seeing a movement disorder specialist, not just a neurologist. Beaumont, Ann Arbor, or Henry Ford would all have good ones. (I grew up in Huntington Woods.) None of us is in a position to recommend medications.
Re the bike. Your dad will only use a bike or anything else if he enjoys doing it or at least enjoys it more than the prospect of spending his life in a wheelchair. (Harsh, but real.) Even though it's inconvenient, he should try out cycling before making a major investment. As Neuroscientist Dr, Jay Alberts says, "It's not about the bike; it's about the cadence." You can use a road bike on a trainer, a stationary bike, one with motors, bells and whistles or whatever, but what counts is riding 3 or more times per week with a 10 minute warmup, 40 minutes at the 80-90 cadence and 10 min cooldown. Use whatever incentives work, but rest assured, it is not necessary to buy a motorized bike. Another thing I do is the Dance for PD program. It's fabulous on many counts. Having PD is like having a new job. You have to work if you want to succeed and you must be consistent. Dad has to be the driving force, no matter how badly you want to help him. All the best. |
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"Thanks for this!" says: | natnat (11-12-2014) |
11-12-2014, 12:02 AM | #303 | ||
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11-12-2014, 08:04 AM | #304 | ||
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Magnate
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the goal is to exercise and stay in shape, which everyone should do with or without pd, research on exercise's benefits has been going on way before this tandem bike research came out, in animals vigorous forced exercise has been shown to be neuroprotective, in humans there is a benefit for some people that lasts for awhile after the exercise is stopped based on a few trials. google PEDALING FOR PARKINSON'S. I might be off in describing the exact methods that program uses. personally, in the early years after diagnosis i played men's soccer year round for 4 years and after a game my symptoms were diminished for at least a few hours, can't say if it slowed my progression. |
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11-12-2014, 03:43 PM | #305 | ||
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A few more answers for David. Forced exercise: Most people normally pedal at a cadence of 50-55. By pedaling at 80-90 rpm the person is either forcing herself or being forced to pedal at about half again their normal rate. The protocol for Pedaling for Parkinson's is three times per week, one hour each time (10 min warmup, 40 at cadence of 80-90 rpm and 10 min cool down) keeping the heart rate at 60-85% of maximum heart rate, (follow link to get heart rate). http://well.blogs.nytimes.com/2014/0...art-rate/?_r=0
You can do this at home, at the gym, in a Pedaling for Parkinson's class (offered at several YMCAs), on a stationary or spin bike. I put my road bike on a trainer in the winter and ride on the road when the weather permits. Benefits from the few tests that have been completed show a residual effect for four weeks. Dr. Alberts is not sure why this works but there appears to be some neuroregeneration happening. After seven years since diagnosis I am still at level 1 with my doctors shaking their heads. It's the cadence that counts, and consistency. No therapy will work the same for everyone, but there is nothing to lose and much to be potentially gained through this cycling program. |
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12-12-2014, 04:35 PM | #306 | ||
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Over the last three weeks I visited six PFP classes at YMCAs in Western Washington, trying my best to spin, talk and listen to the experiences of the people with Parkinson's who are doing something about taking charge of their symptoms to the best of their ability. Across all the classes was a sense of joy at having some control over their lives and bodies, joy at participating with the outstanding group of people who were in their classes, joy and gratitude to their teachers for the level of expertise and caring they brought to the program and knowledge that even though their reports were anecdotal, they uniformly, 100%, reflected positive experiences with the cycling program.
We discussed why more people aren't in the classes and why more doctors don't prescribe cycling therapy for PD. One instructor had a prescient insight. She said that after working for more than 30 years in physical fitness, she has observed that there are three types of people: those who believe in themselves, want to be in charge of their life experiences and are willing to work hard to make that happen; those who believe that they were meant to have this disease and there is no point in trying to make a difference; and those who fall somewhere in the middle...hard to convince but possibly inspired by other peoples' experiences and willing to at least give it a shot. I think her observations are all too accurate. My hope for you in this holiday season is that you believe in yourself and you will dedicate the time and effort needed to change your life. |
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"Thanks for this!" says: | Betsy859 (12-13-2014), lurkingforacure (12-12-2014), natnat (12-12-2014), soccertese (12-13-2014), Thelma (12-13-2014) |
12-15-2014, 10:55 PM | #307 | ||
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Hello~
I'm new to all of this...but would love to participate in anything that spreads truth to power..and gives that power to the patients! My husband (76) diagnosed with PD last year....on sinemet...3x a day...with a little improvement in the last few months with body stiffness...but not much else. Have any of you heard about GIGERMD?....Google it and see the amazing results for yourselves. Trouble is, the machines cost about 65,000 each and are made in Switzerland. BUT, the concept of reverse bicycling for PD patient's looks ever so promising. My husband can't pedal fast enough on any type of bike to gain anything from it. He walks, but with walking sticks and then not to very far.... I'm looking for complementary modalities...that are out there, because I see that western medicines just don't have a thing, really, to offer the sufferers of this progressive disease. Does any one know about RG100? or even RG40? Cannabis tinctures? I'm getting us back to plant based diet as well.... I hope to hear back....anyone??......thank you..... and bless you all for sharing..and learning...it all helps! |
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12-16-2014, 07:54 AM | #308 | ||
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Magnate
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[QUOTE=arjena;1113113]Hello~
I'm new to all of this...but would love to participate in anything that spreads truth to power..and gives that power to the patients! My husband (76) diagnosed with PD last year....on sinemet...3x a day...with a little improvement in the last few months with body stiffness...but not much else. Have any of you heard about GIGERMD?....Google it and see the amazing results for yourselves. Trouble is, the machines cost about 65,000 each and are made in Switzerland. BUT, the concept of reverse bicycling for PD patient's looks ever so promising. My husband can't pedal fast enough on any type of bike to gain anything from it. He walks, but with walking sticks and then not to very far.... I'm looking for complementary modalities...that are out there, because I see that western medicines just don't have a thing, really, to offer the sufferers of this progressive disease. Does any one know about RG100? or even RG40? Cannabis tinctures? I'm getting us back to plant based diet as well.... I hope to hear back....anyone??......thank you..... and bless you all for sharing..and learning...it all helps![/QUOT the important thing is to exercise, regardless of whether you have pd. there are motorized exercycles, never tried them, not endorsing them. so your husband gets absolutely no relief from sinemet? are you sure he has pd? the major ingredient in sinemet, l-dopa, was originally derived from a bean, nothing very "modern medicine" about that except you get a much purer, reliable, safer product imho. |
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"Thanks for this!" says: | natnat (01-21-2015) |
01-21-2015, 12:25 PM | #309 | ||
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I know there is no magic solution for everyone, but I feel compelled to tell you the latest changes in my physical status. A year ago I was skiing at Whistler in British Columbia and had to come off the mountain because my arm was in such pain I could not even hold a ski pole.I was quite literally in tears and sure I would never ski again.. Yesterday I skied top to. bottom for hours with no pain.
To what do I attribute this change? I've been doing three things differently the last six months. I've been working with the Beneufit program on my bicycle, very cheap, not very much special gear. I ride for an hour five or six days a week part, program to maintain arrangement that is pushing me harder than I would normally go but not beyond my capacity. The second thing is that I started taking Sinemet, a low dose of 25/100 3 times a day, and I do the PD Dance class nearly every week. My physical (and mental) changes feel like a miracle. I reiterate. That this is my personal, anecdotal experience, but to me it emphasizes once again the immeasurable ( at this point at least) value of consistent exercise. |
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"Thanks for this!" says: | Betsy859 (01-22-2015), lab rat (01-22-2015), natnat (01-21-2015), ScottSuff (01-22-2015), soccertese (01-21-2015) |
01-22-2015, 04:22 PM | #310 | ||
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Every Movement Disorder Specialist I speak to knows that exercise is an important part of disease management and living better with PD. We try to not only fund research to provide evidence on exercise for PD patients but we also work to share information on the topic.
Here is a link to the Exercise area of our website. https://www.michaeljfox.org/understa...c.php?exercise Our last "Third Thursday Webinar" was devoted to the topic as well. You can access the webinar exercise here. (Along with other topics in the archive!) https://www.michaeljfox.org/understa...c.php?exercise Debi |
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