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Crippling Dystonia

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Parkinson's Disease
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Posted 5/20/2010 9:28 AM (GMT 0)
I have Parkinsons disease and have had it for about 5-6 years.  Since the fall of 2006, I have had episodes of foot dystonia in my left foot.  I have the rigid type of Parkinsons.  In the past year and now lately, I have been experiencing more frequent episodes of dystonia and now a lot of times in both legs and feet.  It is very disabling and lasts sometimes for an hour or until the meds kick in.  Its really a problem, when this occurs and you're away from home too. 

Has anyone else out there experienced similar problems in dealing with Parkinsons and what, if anything are they doing to deal with the associated dystonia?  Any sugestions would be helpful.  I have read about apomorphine and botox injections, but not sure I'm ready for this yet.

Thanks A Lot

Neilp02 tongue

Posted 5/20/2010 2:30 PM (GMT 0)
I haven't tried Botox yet but I know several people that have w/o any side effects. I am starting it with my next MD visit this summer.
Posted 5/27/2010 7:15 AM (GMT 0)

Thanks Karl for your input on this.  Although, I may have to do the Botox, I want to exhaust any other things that might be causing this.  If you have anything else about your program that you'd like to share with me, I'd be very interested in it.

Thanks for your input.

Neilp02

Posted 5/29/2010 12:30 AM (GMT 0)
Dystonia in my right foot was the presenting symptom pf PD for me (along with a lack of right arm swing which was a clue that something was wrong but was not a problem). Siniment clears it right up but I am trying not to take too much because I am concerned about side-effects so there have been times when I did not plan well or unexpectedly had to walk somewhere and had a very difficult time.

I have not tried other meds but I am trying a new doctor in June and I am going to see what ideas he has. I don't have a lot of other PD symptoms so dystonia is the main one I am trying to manage which is why I think Sinimet may be overkill. I will report back on what the new doc says--he is supposed to be good.

Your dystonia sounds more intense than mine. Mine is not a problem if I am sitting.

Good luck and let us know how it goes.
Posted 6/11/2010 1:03 AM (GMT 0)
Neilp I just responding to your other posting on this matter. I also suffer from severe muscle spasms. Please read my answer on your previous posting.
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