Parkinson's Disease Tulip


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Old 07-16-2007, 01:22 PM #21
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Default protein ems etc

Boomer-

First, protein is not necessarily a problem.
"Protein Restricted or Redistributed Diet: In a small number of PD patients (primarily those experiencing the on/off effect), L-dopa effectiveness can be compromised by the ingestion of some amino acids, the building blocks of proteins. The large neutral amino acids (LNAAs) compete with L-dopa at both the level of absorption from the gastrointestinal tract as well as at the blood-brain barrier...." http://www.homenutrition.com/care_ce...parkinsons.asp

The rest is worth reading too.

Second, I have an EMS too although I haven't used it much. But from reading before I bought it, there is quite a bit of science behind it and a lot of PTs use them too.

Third, creatine does wonders for me in building up muscle especially combined with exercise. Works in just a few days.

Visit http://1fast400.com/. Great site for serious body builders with well researched reports. Love their site name: "Monster Maker"
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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Old 04-30-2020, 05:03 PM #22
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Quote:
Originally Posted by cyclelops View Post
Hi

I post on the peripheral neuropathy page. I have small fiber neuropathy and severe restless leg (all over body) for which I take Pramipexole...(not a small dose either.) I have been riding a bike more or less for 21 years. I have gone thru periods where I have stopped and I have deteriorated horribly. I was off my bike for a while when they put in a PICC line to give me steroids and then I really went down the tubes. My family lives and breathes cycling and my one daughter is a pro...(one of the few really clean pros-she knows the dangers of fooling with physiology-she is an environmental scientist as well). I am a nurse and a clinical exercise specialist.

I can not explain the exact phenomenon of why cycling works to keep my symptoms more or less in control, of course, my symptoms are not like typical parkinsons. I do however, have severe autonomic neuropathy as well as sensory neuropathy. I not only pedal around on a mountain bike or road bike, I do it to music in one ear only, and I ride in a dark tunnel to challenge my balance (somatosensory system). I stimulate every system, visual, vestibular and somatosensory.

I think some of the benefits have to do with stimulating dopamine and endogenous opioids. I can't run anymore due to desicated discs that require open chest surgery to fix, and I can't tolerate general anesthesia. I am a female, 54 and did my last sprint triathlon at 50....I canned competition for now, as I got so out of shape on steroids and needed almost 2 years to rebuild muscle lost to the treatment. I am not ruling it out as a possibility in the future. Bike trails are a great place to start, as they are flat and safer in terms of traffic. Get a stress test, as recommended before undertaking any new exercise regimen. I bring a cell phone, dog repelent spray, wear a camel back, as I am prone to plunging blood pressures, and I have global anhidrosis, do not sense temperature well, so I have to bring a variety of clothes and layers in unpredictable weather....I also don't feel myself sunburning, and I also have gastroparesis, so I have to sip water the whole time I am on the bike, as my stomach does not empty as it should leaving me feeling like I have a bowling ball in there.....but hey----it is worth every minute! Oh and bring a identification with your medical condition on it.

I highly recommend clipless pedals of the mountain bike variety, shoes you can walk on and shoes that clip in and keep your feet in position, but also release very easily. I wear mtn. bike clipless for my mtn. bike and road for my road bike, but if you have balance problems or gait problems road shoes will cause you problems. Toe clips that fit on regular shoes can make for a slow escape from a pedal, slower than a clipless pedal.....I recommend having several hand positions as well, and I have some adaptive (actually racing bars/aero bars) on my bikes. Proper bike fit is essential. My biggest urk, when I get off a bike or take my feet off even the feet of a chair....it feels like that is stuck in my foot for a half an hour afterwards....

I highly recommend cycling and if a regular bike won't due there are adaptable bikes and stationary bikes, both uprights and recumbents...there are even tandem recumbents...and lots of social opportunities. In my cycling adventures I have met a one legged cyclist who had crossed the Rockies (Lord I can't do that with 2 legs and one blind cyclist.)

Just wear a helmet, eye wear and gloves...padded shorts help too! Nothing like wind in your hair and bugs in your teeth to make you feel great! A bee down your shirt doesn't feel that great....but it happens.
It's very impressive that you're able to keep up with cycling given all the complications you face! Many kudos to you.
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Old 01-19-2021, 03:39 AM #23
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My hubbie uses a Theracycle and it really helps !!!!!!!
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