What is Dystonia
Dystonia (literally, "abnormal muscle tone") is a generic term used to describe a neurological movement disorder involving involuntary, sustained muscle contractions. Dystonia may ...
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hi to every one. let me start by saying i do not have dystonia. but my mom has gen distonia affecting her legs hands neck vocal cords and diaphrame. she also has epilepsy but thats another story. i am in a way her care taker at times although she is very independent and still works. she has a trach and a implanted baclofin pump. right now she is looking into having DBS (deep brain stimulator) put in. this scares me and my dad because of some of the risks we have heard but she is very insistant that this is what she wants. so my question is has any one had this procedure done and how are they doing and if not has any one or is any one concidering it??? thank every one
Posted on 08/25/09, 07:08 pm |
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Your mom sounds like a real fighter, and you are a very good daughter. I have cervical dystonia, and about a year ago lost my voice due to spasmodic dysphonia, also have multiple sclerosis. I am independent. My husband, and I have been married for 37 years.
At times he has been my caregiver, but I basically do things for my self, don't drive, and don't work. I know the deep brain stimulation is a scary issue, my doctor hasn't said anything about it and neither have I. I hope only the best for you and your family, I know chronic disease affects everyone. 
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thank you for your reply she truely is a fighter and you sound so too. i wish she would choice not to drive but i know that to big of a thing for her.
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Keep in mind your MOM is scared of losing her independence, your Mom will know when she can't drive anymore, besides she has you for support she is very lucky. Keep your chin up.
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Hi Im actually on my bf's name looking up info for the baclofen pump and I was wondering If you might be able to help me with some questions on that ..He has secondary generalized dystonia that affects his hands and legs right now , he is currently in a wheelchair although the doctors have been asking him to consider the DBS surgery he wants to try the pump first..Has your mom had any success with the pump at all ? A helpful site for you too might a yahoo support group I believe you can find it by searching http://health.groups.yahoo.com/gro... the and copy that link into your browser..They have many people the good the bad and the ok still that are still getting programming and some that have had the hardware removed soo a very neutral site I think ..I to I have been researching it cause after the pump that is our next option..GoodLuck
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Hello I am new too i use a small amount of valium helps to keep things calm and i do not feel high or sluggish either one and my dystonia is something else when it starts, i still drive on social security 56, try to do some music on the side have
as, neuropathyand other spinal arthritises also. the power of our minds is important i do everything from valium to chanting to prayer and just plain stubborn survivor skills, peace and light to you.
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