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Pedaling for Parkinson's...and dystonia

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Unread 01-21-2013, 09:24 PM   #191
Nan Cyclist
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This is been a most interesting month. In spite of changing back to Requip XL from the generic, I still experienced negative physical symptoms from my Parkinson's. Most annoying was that for 4 to 6 hours each day I felt a random nausea, although I never got sick. I continued to be tired as well. A week ago I switched over to Neupro, 4 mg and waited until today to report on my reaction to it. I felt no sense of nausea for the last seven days. When my cross-country skis fell off the car on my 90, I ran about 200 yards to get back to the skis to call them off the middle of the freeway. (Check out my Facebook page Nan Little to see the beautiful ski.) It was worth losing the ski to realize that I could run 200 yards. I spent the next four days snowshoeing with my friends at Mission Ridge ski area, going up and over and down slopes that I never dreamed I would do again. right now I am up at Whistler Mountain in British Columbia looking forward to four days of downhill skiing with my husband.

To celebrate all of this good news, my son and I signed up to ride the STP bike ride July 13 and 14. Thank heavens he's a really strong cyclist because the STP is 200 miles in two days riding from Seattle to Portland. Along the same lines, I was asked if PFP would like to be the beneficiary of a fundraising ride here in the Seattle area on July 21. I hope my son will stick with me so we can ride the fundraiser on a tandem as well.

FYI, for Christmas I got a new MacBook Pro that has a remarkable dictation device. My right hand can hardly type anymore so this is an amazing addition to my life. It's strange that my gross motor skills and my cognitive skills are doing so well, whereas the fine motor skills in my right hand continue to take a dive.

Today was a milestone of sorts. Exactly 5 years ago I was diagnosed with Parkinson's and the day after the diagnosis my husband and I drove up to Whistler to go skiing. I remember how totally terrified I was at the time. Both of the disease and my ability to follow through with skiing anymore. Now we're talking about buying new skis and boots for me, even though it might be a silly idea.

Anxiety continues to be one of my biggest problems, that and the tremor that goes crazy when I get anxious. My husband tells me to consider all of the things that make me anxious as just adventures. I think he's right.
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Unread 01-22-2013, 01:51 AM   #192
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Nan, I love your inspiring posts. I was diagnosed 6 years ago & am doing remarkably well cognitively & in most other ways, except for a truly huge tremor (meds don't help) and back/hip pain that slow me down. I have done stationary biking, dance, yoga, Alter-G treadmill, aquatics, chorus, etc., but am nowhere near your level. I want to ask my local Y about getting a biking program going. Please send any info, links, or whatever might be helpful.

Due to my tremor, my typing is horribly difficult. Tell me more about the Mac dictation. They're expensive (for my modest budget); any tips on finding a deal? Many thanks.

Last edited by Peony; 01-22-2013 at 01:52 AM. Reason: typo
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Unread 01-22-2013, 08:22 AM   #193
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Default thanks nan

hardly any first person accounts on neupro. very interesting, hope you post regular reports on how it works.

thanks for inspiring me to exercise!
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Unread 01-22-2013, 10:27 PM   #194
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Peony,

I will be happy to send you information about Pedaling for Parkinson's at the Y if you would send me an email at nan.little@comcast.net. I'll be happy to send anyone copy of the licensing agreement and information about how to get started creating a PFP program. Also, if your local YMCA or health club is not interested in starting a PFP program, I can tell you how to initiate the activity on your own.

As for the MacBook Pro, you're right, they are expensive. I went to the Apple website and got a reconditioned MacBook Pro that shaved a fair bit off the price. I didn't even realize it had this feature until after I received it and was doing a training at the Apple store. So I would check with Apple to find out what is the oldest version of MacBook Pro that has this dictation feature.

Well, my first day of downhill skiing for the season was a little less than outstanding. Actually, a lot less than outstanding. I did fine until lunch, except for the repeated cramping in my finger on my right hand, the big toe of my left foot and, the right foot in its entirety. At about 1:30 I lost almost all my steam. I fell twice and had a hard time getting up, probably because my core is woefully out of shape. But I did get up, and the cramps eventually went away. My stomach continues to feel fine however and I must admit I asked for a whole lot of energy from one little neupro patch! Thanks for the encouragement.
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Unread 01-28-2013, 01:29 AM   #195
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Default One leg less coordinated than the other when cycling

Nan, thanks so much for your sharing your research and insights into forced exercise (FE) cycling with us all. Your stories and your Parkinson’s journey are truly an inspiration to me. I hope my Parkinson’s progression is as slow as yours, and hoping this more robust cycling work out will help me achieve this goal. I just started FE cycling last week on a stationary bicycle at the gym. I have no problem keeping the recommended heart rate and at least the 80-90 RMP cycling speed for 45 minutes. However, my left leg is less coordinated and clumsier than my right leg - I’m one of those one-footed clompers and draggers, in my case on the left side. So, when I cycle, my left leg has a tough time keeping pace with my faster and more coordinated right leg, so the rotation of the pedals becomes stilted and catches awkwardly when my left leg has to catch up with my right leg. Has anyone else experienced this while cycling? Any suggestions on how to overcome this problem with asymmetry between the legs?
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Unread 01-28-2013, 08:33 AM   #196
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Quote:
Originally Posted by crimsoncrew View Post
Nan, thanks so much for your sharing your research and insights into forced exercise (FE) cycling with us all. Your stories and your Parkinson’s journey are truly an inspiration to me. I hope my Parkinson’s progression is as slow as yours, and hoping this more robust cycling work out will help me achieve this goal. I just started FE cycling last week on a stationary bicycle at the gym. I have no problem keeping the recommended heart rate and at least the 80-90 RMP cycling speed for 45 minutes. However, my left leg is less coordinated and clumsier than my right leg - I’m one of those one-footed clompers and draggers, in my case on the left side. So, when I cycle, my left leg has a tough time keeping pace with my faster and more coordinated right leg, so the rotation of the pedals becomes stilted and catches awkwardly when my left leg has to catch up with my right leg. Has anyone else experienced this while cycling? Any suggestions on how to overcome this problem with asymmetry between the legs?
are you taking any pd meds? i have a recumbent and without my meds i can barely hit 50 rpm and very jerky to the point i don't pedal without meds. my pd started on my right side, finally started to take meds after 5year when i started having too much rigidity on my right side. i was very active those years, soccer,swimming, running, weights but no cycling.
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Unread 01-28-2013, 04:15 PM   #197
Nan Cyclist
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Crimsoncrew, just an aside, but I'm wondering if you used to row for Harvard?

But to your question. I find that asymmetry is part of the game. To try to equalize the power in my legs I often work on one leg at a time. I cycle for as long as I can with both feet clicked in. Then I take 1 foot out of the clip and rest it on the trainer and pedal with just one leg. For the first few revolutions, the motion is relatively smooth. Then it gets jerky when I can no longer maintain the circular stroke. I put both feet back in the clips and pedal along for a while. Then I take the other foot out of the clip and do the same thing on the opposite side. Well it's pretty disconcerting to feel the jerk jerk jerk when I'm riding with just one leg, I realize that I'm eventually evening out my stroke. I'm also pedaling faster once I put both legs back in the clips.

As far as medications, I put my neupro patch on by eight or 8:30 in the morning and then do my exercise after I have the new patch in place.

I have no idea if this will help, but I sure hope so. Thanks for your kind words. They mean a lot.
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Unread 01-29-2013, 02:07 AM   #198
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soccertese, I am not on meds, yet. Got a recent dx of "Parkinsonian syndrome", but anxiously waiting for a follow-up appointment with a movement disorder specialist to get into the details of what exactly I have. I'm truly hoping that I can stay active with athletic activities and sports for as long as possible. Sounds like you stayed very active for many years before getting on meds - any advice you can share on how to make this happen?

Nan, I did row crew in college, and actually still row now, though I dread thinking about how much longer I can continue before I have to stop... With the stationary cycling, I will try the one leg at a time routine and see how it goes. It's frustrating that one leg can't keep up with the other - I feel myself wobble and gyrate in the bike seat from one side to the other when I try to use both feet.
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Unread 01-29-2013, 09:30 AM   #199
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Quote:
Originally Posted by crimsoncrew View Post
soccertese, I am not on meds, yet. Got a recent dx of "Parkinsonian syndrome", but anxiously waiting for a follow-up appointment with a movement disorder specialist to get into the details of what exactly I have. I'm truly hoping that I can stay active with athletic activities and sports for as long as possible. Sounds like you stayed very active for many years before getting on meds - any advice you can share on how to make this happen?

Nan, I did row crew in college, and actually still row now, though I dread thinking about how much longer I can continue before I have to stop... With the stationary cycling, I will try the one leg at a time routine and see how it goes. It's frustrating that one leg can't keep up with the other - I feel myself wobble and gyrate in the bike seat from one side to the other when I try to use both feet.
i certainly was an exercise junkie for those years, playing soccer, running, weights, swimming, for all those years. a lot of aerobic exercise, like 4-5 days/week since i played a men's soccer game twice a week and a pickup game on sunday. won't bore you with the other details. suffice it to say, after i stopped playing soccer my pd seemed to progress faster. i stopped because i just couldn't keep up with my peers anymore, 40 year old men are very competitive, and i rationally or irrationally didn't want to have to start taking enough pd meds to try to continue to play so i quit. back then there wasn't the buzz over exercise that there is now otherwise i would have kept up the same aerobic load via other activities that i was getting from soccer.

during my "drug free" years, took a lot of supplements, took the 1200mg/day coq-10, ginseng, b-12, vit-e, vit-c , etc. but can't say anything helped slow my progression.

things i tried that i wouldn't recommend to anyone is chelation therapy and I.V glutathione. i tried the chelation therapy because strangely enough, my PD symptoms got worse a few days after having my mercury amalgams removed, i had this done because my dental insurance was going to run out, my old filling were starting to fall out and decided to have the 3-4 fillings replaced, nothing to do with pd. i found a MD who specialized in this, got a metals and hair analysis which didn't show i was high in anything except interestingly enough the imaging agent used in the MRI i had had a week earlier which was surprising since it was supposed to be cleared out in a day.
i switched to a do it yourself chelation, the CUTLER PROTOCOL, requires a RX. Desperate people do desperate things.
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Unread 01-29-2013, 03:51 PM   #200
Nan Cyclist
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Dear Crimson crew and anyone else out there who has not started medications yet,

Please consider becoming part of the PPMI study through the Michael J Fox Foundation. It is very difficult to find people with Parkinson's who have not started medications yet, and that is what is needed to make this PPMI study work.

Hopefully the awkward gyrations will level out on the bike.
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