Parkinson's Movement
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Foot Dystonia

Hello!

I have had Parkinsonism for years now! My main problem is getting stuck and balance problems!

I am suffering with my toes curling under making it almost impossible to walk.

Does anyone have this problem and what do you do for it?

I am scheduled to get my 10 week Botox shots on Wednesday but am only getting it in my neck!

27 Replies
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I have been having this problem for several years and am getting botox injections in my foot. it helps some

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I do remember sometime back this subject came up ... check the search window... i remember there were lots of helpful ideas...just type in "toes"

My severe toe problems got resolved via my DBS.

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WHAT IS DBS?

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dr said that was dystonia I have it in my feet, hands, lower leg and right side of neck. I take turmeric capsules . you also take yellow mustard which works equally well. Just take a couple tablespoons. tonight im up because dystonia in my right arm woke me up with incredible pain

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Dystonia is one of my main problems since being dx, it cripples me sometimes

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I went to a physical therapist for some of my issues, including this. initially, it was manually moving toes out straight and then practicing opening and closing toes without aid repetitively until I retrained myself to do it. then added to it with toe lift exercises, etc. Takes a lot of time and does not solve it happening while sleeping (the resulting cramps in my feet will wake me up), but does help some as long as I persevere. PT and later exercise on my own has helped much with balance and getting stuck as well. good luck,

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Dystonia is fromack of Dopamine? Why not just take a sinement?

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I take Sinemet and after 6 years its effect is wearing off. Wish I was aware of that in the beginning.

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Lack of dopamine?

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because over time the sinemet wears off. There's never a level amount available. I know I get my toe curling in the morning before I'm able to take my meds. If you don't do exercise and manipulation, it gets stuck that way for some folks.

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I've read a physician say that the only thing that stops the severe kind of foot cramps some of you are talking about is "dopamine and lots of it."

Recently, however, I've read that a lack of lithium may be the cause and sure enough I've experienced a reduction in the frequency and the severity of my foot cramping after taking a small dose of lithium for a couple of weeks now. I take 20mgs twice a day. They haven't gone away completely but this much easier to manage.

For those of you who worry that lithium will turn you into a kind of zombie like it does to mental patients, you must realize that they are taking a much higher dosage - around 900mgs a day.

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Thank You! maybe I will try iit? Right now I am trying Vitamin E and Tumeric that someone else recommended~

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DBS = Deep Brain Stimulation, sorry, i get lazy here and use a fair amount of abbreviations...my fingers don't type so well any longer...

The night of my implant surgery I had the first relief in years for the toe issue...even before they had the neuraltransmitter installed - in other words just placing the electrodes into my brain gave me dramatic relief, even before they had cabled in the wires or power to the electrodes, 2 1/2 years later, no problems, still working like a charm!

Best wishes,

Steve

Bisbee, AZ

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I spoke to my neurologist and he told me that they don't do DBS at Yale!

too bad! Where did you have it done?

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Tucson Medical Center ... I chose them because I like and totally trust my Neurosugeon: Dr. Thomas Norton. He has done over 600 DBS operations, has never lost a patient, and is an excellent communicator!

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I scheduled to see Dr. Norton when I moved to Tucson and when I arrived Amy Tees cared for the appointment. She was full of wisdom and most helpful. I would be going back to her and Dr. Norton now but I think he was out of the office for a while so I found a neurologist at The University of Arizona Medical Center. Do my speech and occuupational therapy at Health South. ~~Dennis

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I had it done by a team at Stanford. They were amazing. I had frequent freezing, but no more

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Hello Steve again!

How bad where you before you decided on the DBS?

I have Parkinsonism and Dystonia!

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Thank you for the explanation! Would you recommend DBS for other of your symptoms?

my name is Maida and I live in Hamden, CT

maidar@att.net

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M,

Yes, it solved almost my entire list of symptoms except for the swallowing speaking and falling problems. I still do fall, but am better able to protect my self in the process. In my specific case, i had improvements in areas where I was not anticipating them. It has been like a new lease on life for me, but then again, I could easily become the poster child for DBS sucess. You might choose to talk with a Medtronic "Ambassador" to learn about some more "normal" success stories instead of my more extreme atypical story.

Best wishes,

Steve

Bisbee, AZ

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Please tell me what DBS is I havedysonie in my toes on both feet Fay

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I am trying some supplements that others have recommended that I find have helped with the foot dystonia!

I have added B100, Vitamin C, vitamin D Vitamin E and Tumeric!

It has been a little over 1 week since starting and my toes only curled once when I was walking too much in Home Depot!

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I don't have Parkinson's but have focal dystonia in my left foot that makes walking difficult and very painful. My toes curl under and I walk on my toenails which are all thick and have fungus as a result. I go to motion disorder nuerulogist and They have tried Botox injections in foot and leg three times with increasing quantities with no success. I have tried physical therapy, Tibetan herbs, acupuncture and toe bracing and metatarsal pads by podiatrist with no success. Can you share the exact doses of the vitamin s. And what you mean by taking turmeric (the spice? How do you take it, how much?). I got the dystonia at same time as I was diagnosed with type 1 diabetes 7 years ago.

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I read your post of 2 years ago and I have exactly the same problem in my left foot. I get Botox and improves some for less than two months. I wanted to know if you have bee able to find any good solutions for your condition. I tried Carbidopa-Levodopa but I did not see much improvement and I had side effects.

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The neurologist wants me to get Botox but can not tell me what they are suppose to do so I have that on hold. Do you have any information you can share with me about the Botox injections? ~~Dennis

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I recently had dbs surgery and THANK GOD--my toes and foot is straight for the first time in 7 years!!

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Oh yes my feet curl and it is very difficult to walk. I find that my toes tend to curl in the morning , you too? I stretch my toes and take my med's and usually goes away in the afternoon, I also been noticing that my right is starting to curl. My med's I tqke is Carbodopa. And Mirepex and I can't live without them !

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