Parkinson's Disease Tulip


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Old 11-15-2013, 03:45 AM #1
HeartSong HeartSong is offline
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Default Dystonia of the foot

Has anyone with dystonia of the foot (with or without Parkinson's Disease) found anything (drug or non-drug) that has improved or stopped the dystonia?
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Old 11-15-2013, 07:33 AM #2
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Quote:
Originally Posted by HeartSong View Post
Has anyone with dystonia of the foot (with or without Parkinson's Disease) found anything (drug or non-drug) that has improved or stopped the dystonia?
Unfortunately, I would have to answer no. Nothing has worked for me. However, I have heard from some other PWP that botox worked for a while. You may want to discuss that with your doctor.
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Old 11-15-2013, 10:31 AM #3
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Default Maybe....

But first, think long and hard about the botox. Among my own misgivings:
It is one of the deadliest toxins known;
It is a high profit procedure so you need to keep that in mind;
It produces permanent damage but only temporary relief;
It supposedly has the ability to "wander" into areas where it is not wanted similar to the way that silicon breast enlargement did;

As for the question, "Is there anything else?", the admittedly frustrating answer is that, based on my own experience over the last two months, yes there is but unfortunately I can't say just what it is due to my poor lab standards and the fact that I only have one rat. If that ten dollar grant comes through from "Pets R Us" I will be able to double my testing capacity...

But seriously, I have seen a reduction of early morning dystonia, cramping, curly toes, etc over the last two months during a period of wide scale rearrangement of my supplements and such. The best that I can do is to list the changes that I have made and leave it to you. In approximate order I have added magnesium (my own guess), potassium, B-complex - note that these are all water soluble and are quickly lost. They are also critically important to the function of muscles and nerves. I also continue to use ginger and turmeric at the same levels as before and am adding in Vit B12 and D3 but am doing so slowly. I have also eliminated a beta blocker but it is also a recent change.

I remain convinced that the entire realm of basic electrolytic chemistry is neglected to a shameful extent but it is best approached with caution due to the interwoven nature of it all. Nothing exists in isolation.
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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 11-15-2013, 12:42 PM #4
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Default Nope haven't heard of anything ...

I tend to use the old trick of pulling the foot till the cramps go away.

Neil.
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Old 11-15-2013, 12:55 PM #5
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Default Botox for dystonia

I have gotten a single botox shot in my left foot every 3 months for over a year. It takes care of the problem for both feet maybe 80%-85% of the time. I havent noticed it "wandering" to other parts of the body or other harmful side effects. Thats been my experiance...
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Old 11-15-2013, 02:18 PM #6
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Default dystonias gone

I used to have dystonia in the hand and foot but no longer do. I have tried so many things that it is difficult to say what did it. My two top choices are the Hinz protocol (he says dystonia might be due to depletion of sulfur amino acids such as l-cysteine) or it might be acupuncture. If you are unfamiliar with the Hinz method do a search. Otherwise let me know and I will post the links again. Good luck!
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Old 11-15-2013, 06:11 PM #7
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After I was cycling for about a month at the cadence of 80-90rpm, all my hand and foot dystonia disappeared. That was years ago and I have kept up the cycling.
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Old 11-18-2013, 08:41 AM #8
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The natural l-dopa in favas took mine away and also the night drooling. My right foot was set on writhing or pedaling when II went to bed and finally got comfortable. If it starts trying to happen , I get up and take a couple more drops of tincture so I will not be doing an unwanted bike trip instead of sleeping. Wouldn't mind to do it in the daytime. My bike and kayak are gathering dust in the barn.
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Old 01-25-2014, 09:55 PM #9
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Nan Cyclist, you go, girl! What kind of cycle do you use - theracycle, stationary, recumbant? Also, do you have Parkinson's? Thanks.
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Old 01-27-2014, 01:55 PM #10
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The type of cycle is not important. What is important is the cadence. But FYI, I use the standard road bike set up on a trainer. The program works just as well with the recumbent or spin cycle. I am told that the Theracycle does not produce the same results. A person normally cycles at about 55 RPM, but in the forced cycling program, the patient rides a 10 minute warm-up session, 40 minutes at 80 to 90 RPM and 10 minutes cool down. If you think about it, they forced cycling pace is about half again the normal pace. So if your normal pace is 40 RPM, it might be interesting to try to cycle at 60-70 RPM for the forced paced segment. Much more information can be found in the pedaling for Parkinson's thread on this forum.

I was diagnosed with Parkinson six years ago. It has been an interesting trip.
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