Kennedys Disease Community
02-06-2015, 07:26 AMrdkaz
Two of my brothers have been diagnosed with KD within the last year. Ages are 55 and 54.
Brother Bill has had increasing occurrences of tremors in his hands, arms and legs. These in turn create anxiety; with further exacerbates the symptoms.
Does anyone else experience these tremors; and how are thy treated?
02-06-2015, 03:57 PMKDA Adminstrator
This is Bruce, not Terry. I signed in as the administrator today and forgot to sign out before replying.
As far as I know, tremors are quite common for those of us living with KD. The good news, in my case anyway, is that they come and go. Sometimes they are more noticeable and other times I hardly notice them at all.
Your brother can discuss possible treatments with his neurologist. Personally, I try not to medicate symptoms that are manageable. When it becomes a health issue, that is another matter, however.
02-06-2015, 11:31 PMRonald M.
It is also my understanding that tremors are common. It is interesting that when I was younger before my diagnosis. I had frequent tremors/twitching in my fingers, tongue and other parts of my body. As the years of gone by, I have not had many tremors at all. I agree with Bruce. I wouldn't medicate any symptom of KD unless I had to.
02-07-2015, 01:12 AMPocatello Jim
My tremors are quite pronounced and make eating and drinking very difficult. They were the first symptom of SBMA that I remember. People noticed them in my late teens. They were dismissed for years as familial tremors, because my grandfather also suffered from tremors.
Over the years, I have taken Propranolol(sp?), Primidone, Atenolol, and currently Topomax. Many of these medications have side effects that for me were worse than the tremors. My doctors would prescribe them. I would take them for a few weeks or months and then stop because I just couldn't stand the side effects.
In 2011, I was eating nearly all of my meals with a spoon, because my tremors were so bad that with a fork, all the food would fall off before it reached my mouth. My doctor at the time, asked me to try Topomax. The side effects only lasted a couple weeks. It does not work as well as the others, but I am able to function.
I do also manage other symptoms with medications. I resisted for a long time, but my wife and neurologist really encouraged me and I am glad they did.
Whatever decisions regarding symptom management your brothers make should be done in consultation with their neurologist.
03-12-2015, 06:54 AMrdkaz
Thank You all for your replies. I apologize for my tardy reply.
My brother's tremors occur increasingly; while at rest; and include his head, arms and legs.
We are trying to determine the cause. Parkinson's disease is a candidate.
Is Parkinson's disease sometimes associated with Kennedy's disease?
03-13-2015, 10:36 AMEd Meyertholen
There is no relationship between KD and Parkinson's Disease. You mentioned earlier in this thread that your two brothers were diagnosed with KD - was this done by the genetic test? If this is the case, I would think that this is the cause of the tremors. I am not sure why Parkinson's is being considered. Maybe I am missing something. Is your brother seeing a neurologist?