Dystonia support correspondence

Dystonia support correspondence — part two

January 30th, 2004 @ 7:15 PM in Medical Reports

The following is a copy of a post that I have written in the support group. I will update this post with replies, if any.

From: “Michael H. Park”
Date: Fri Jan 30, 2004 6:59 pm
Subject: Progression of Dystonia

Hello all,

I’ve read somewhere before that the progression of Dystonia — especially Early-Onset Generalized Dystonia — stops at the age of 20. In my case, this holds true: I had symptoms of Dystonia from infancy, but the progression started at 7 and ended at 20. In that 13 years, I’ve had over 10 dystonic attacks where I got into a fetal position because of muscle contractions in my abdomen. During these periods, I was is constant unbearable abdomenal pain and found it extremely difficult to breathe, speak, sleep, eat, etc. I constantly had to be re-positioned due to “bed sores.” Somne of these attacks lasted up to two years, and I lost number of bodily abilities or functions every time.

Like Hannah and some others, my “problem” is that the muscles are too rigid and strong. Unlike her, however, I don’t have full control of my arms. I’m not even able to feed myself, though I do have some control in my right hand and both of my legs with mild rigidness in my left leg. Because my arms tense up with rigidness, they compress my chess and lung, maiking it difficult to breathe and in turn, speak.

I’m not, however, in constant pain anymore as patients with other forms of Dystonia are. Nonetheless, the quality of my life is no
better than someone with worse disabilities as most of you can relate.

My question: Do you know if the “progression” I’ve wrote above is true?

Michael

From: “DystoniaGal”
Date: Sat Jan 31, 2004 9:41 am
Subject: Re: [DBSforDystonia] Progression of Dystonia

Michael
I would say that the same was true for me, but I don’t totally think it stopped at 20. I think the progression slowed down. My onset was at age 11. By 12 I was on crutches due the fixed position of my left ankl.e, which is where it first started and slowly progressed up my entire left side. By 15 my trunk area was fully involved in my dystonia. I woud say it wasn”t until about 18 the my left side, shoulder and arm got involved. Everything then started moving to my right side. I am guessing it would still be progressing if I had not had dystonia. When I got to college, I was in a wheelchair about 50 percent of the time.
My MDS says I have about 75% improvement and that was pre-infection. I have since had the lead replaced in a different location and I am not sure where I stand as far as improvement goes.
Suzie

From: “hannah”
Date: Sat Jan 31, 2004 10:29 am
Subject: RE: [DBSforDystonia] Progression of Dystonia

Michael,
I’ve heard from my drs and professor, as well as having read material, that early onset can take two forms. It can stop at around the age of 20 of totally the opposite can happen and it can be the most aggressive form of dystonia and have the worst prognosis. My dystonia has not approved at all from the age of 20-infact as got significantly worse. Whereas before the age of 20 I was just unable to move/ use my right arm and had problems with my right leg, it is now everywhere and the breathing and total rigid as got
increasingly worse. This is a pattern I have seen with others too.
Hannah

From: “Laura”
Date: Sun Feb 1, 2004 1:05 pm
Subject: RE: progression

hi michael,

i don’t know anything about dystonia progression slowing or stopping by age 20, but i do know that the opposite was true for me. my symptoms began while i was in middle school, and progressed rather slowly until my late teens/early 20s. after that, i started to ‘tank’, particularly in my late 20s, like, around 27. i finally had bilateral dbs to thwart further progression last april, at age 31, and have had remarkable success. my hands are still quite clumsy (i can’t write too legibly, but at least can hold a pen), but my walking is back (almost) to where i was at the time of my earliest symptoms — if not better.

hope this info is helpful,
laura