Hi,

I'm Debbi and for the past two years, I've been dealing with focal
dystonia in my left arm/hand and leg/foot, following a stroke. This
has been, without a doubt, the most trying time of my life. I made a
miraculous recovery from the stroke--only to end up with this.

My left hand and forearm clench almost constantly and the toes on my
left foot curl in so much, my calf muscles suffer from occasional
night cramps. The pain is bad enough, but the continual clenching is
akin to Chinese water torture--it's annoying, distracting and just
won't stop.

I've done Botox, with mixed results. It often creates more problems
than it solves. This last round, for instance, caused my grip to
weaken, yet I'm continuing to experience clenching in my flexor
muscles. Figure that one out!

I've done PT and acupuncture. I'm currently trying neurofeedback and
"active isolated stretching neuromuscular therapy." So far, nothing
has really worked.

This is all particularly frustrating and difficult for me, because I'm
a writer. Working on the computer is my life. But it's hard to do that
when your fingers won't move right and your hand keeps clenching every
time you use it.

What gets me is people who know I had a stroke will look at me and
say, "You look great!" They can't see what I'm going through, unless I
hold up my hand and show them how twisted and distorted it gets--just
by holding it up. And they also can't really understand my anger and
frustration. From their point of view, I dodged a bullet. From mine,
the bullet grazed me, but left me with permanent damage.

If anybody has any advice to offer on how to handle this, I'd greatly
appreciate hearing it.

Thanks,
Debbi

lovie65

Hi Debbi,

I have cervical dystonia, after fracturing my neck 3 times, everything
is put back in place with plates and screws with one disc left
buldging. I also suffer from seizures and have had many strokes,
compared to when everything first happened, I hear that a lot, boy you
are looking good.

I hate hearing because i can no longer work in the medical field which
i truely enjoyed, but i just responsed as politely as i can, thanks, i
just wish i felt as good as everyone keeps telling me i look.

until someone walk on once of in our shoes, i don't think they mean
harm, i just don't think they understand how to relate to someone who
has lost everything they have worked so hard for.

gooo luck and best wishes

I'm so sorry medical problems forced you to leave a profession you
loved. That's just beyond awful. But I want to thank you so much for
writing and sharing your thoughts. Man, do I hear you about what
people say . . . and you're right. They mean no harm. They really just
don't understand. I like your answer, too.

Debbi

jim

Hi Debbi

I was reading your posting on your dystonia. A few years ago I
collapsed in the street in London and was unconscious in hospital for 6
days. When I woke up, I had a splitting headache, crossed vision, and
couldn't walk without a frame. Oh yes and slurred speech. Then I
actually fell out of bed in the hospital and broke one of my front
teeth. A while went by, and gradually things got better. I walked with
a stick and fell over about a 100 times hitting my head on the
pavement/sidewalk.
The theory was that I had had a stroke, and yet all scans - MRI, PET,
CAT and God knows what else were all normal. I certainly didn't feel
normal. Eventually I could walk without a stick and my speech was
normal again. Then one morning I woke up unable to speak, chew,
swallow. This happened 18 months later literally overnight and was
diagnosed as Oromandibular Dystonia. I have to take loads of drugs to
keep it manageable.
I had a botox injection 4 months ago which made no difference at all,
and am due for another one soon.
Regarding the teeth clenching, my dentist made a device to hold my teeth
apart when needed.
But what I really want to say is that after that initial collapse, I
just haven't felt right. No energy, dizzy spells, living half the time
on those nutritional drinks, and often uncontrollable tongue protrusion
which does wonders for the self esteem.
I live in Ireland now where there is a chronic shortage of neurologists
- only about 8 in the whole country I think. I live alone and sometimes
I think I've got agoraphobia - the fear of shopping and not being able
to get the words out.
Some people seem to think you're mentally retarded (I have a Ph.D. in
physics) and I've also been told 'phone back when you're sober'.
The whole thing has ruined my life, so please realise you're not alone.
I'll keep you in my thoughts and prayers.

Regards

Jim
Co. Sligo
Ireland.

Hi,

I'm Debbi and for the past two years, I've been dealing with focal
dystonia in my left arm/hand and leg/foot, following a stroke. This
has been, without a doubt, the most trying time of my life. I made a
miraculous recovery from the stroke--only to end up with this.

My left hand and forearm clench almost constantly and the toes on my
left foot curl in so much, my calf muscles suffer from occasional
night cramps. The pain is bad enough, but the continual clenching is
akin to Chinese water torture--it's annoying, distracting and just
won't stop.

I've done Botox, with mixed results. It often creates more problems
than it solves. This last round, for instance, caused my grip to
weaken, yet I'm continuing to experience clenching in my flexor
muscles. Figure that one out!

I've done PT and acupuncture. I'm currently trying neurofeedback and
"active isolated stretching neuromuscular therapy." So far, nothing
has really worked.

This is all particularly frustrating and difficult for me, because I'm
a writer. Working on the computer is my life. But it's hard to do that
when your fingers won't move right and your hand keeps clenching every
time you use it.

What gets me is people who know I had a stroke will look at me and
say, "You look great!" They can't see what I'm going through, unless I
hold up my hand and show them how twisted and distorted it gets--just
by holding it up. And they also can't really understand my anger and
frustration. From their point of view, I dodged a bullet. From mine,
the bullet grazed me, but left me with permanent damage.

If anybody has any advice to offer on how to handle this, I'd greatly
appreciate hearing it.

Thanks,
Debbi

lovie65

Hi Debbi,

I have cervical dystonia, after fracturing my neck 3 times, everything
is put back in place with plates and screws with one disc left
buldging. I also suffer from seizures and have had many strokes,
compared to when everything first happened, I hear that a lot, boy you
are looking good.

I hate hearing because i can no longer work in the medical field which
i truely enjoyed, but i just responsed as politely as i can, thanks, i
just wish i felt as good as everyone keeps telling me i look.

until someone walk on once of in our shoes, i don't think they mean
harm, i just don't think they understand how to relate to someone who
has lost everything they have worked so hard for.

gooo luck and best wishes

I'm so sorry medical problems forced you to leave a profession you
loved. That's just beyond awful. But I want to thank you so much for
writing and sharing your thoughts. Man, do I hear you about what
people say . . . and you're right. They mean no harm. They really just
don't understand. I like your answer, too.

Debbi

jim

Hi Debbi

I was reading your posting on your dystonia. A few years ago I
collapsed in the street in London and was unconscious in hospital for 6
days. When I woke up, I had a splitting headache, crossed vision, and
couldn't walk without a frame. Oh yes and slurred speech. Then I
actually fell out of bed in the hospital and broke one of my front
teeth. A while went by, and gradually things got better. I walked with
a stick and fell over about a 100 times hitting my head on the
pavement/sidewalk.
The theory was that I had had a stroke, and yet all scans - MRI, PET,
CAT and God knows what else were all normal. I certainly didn't feel
normal. Eventually I could walk without a stick and my speech was
normal again. Then one morning I woke up unable to speak, chew,
swallow. This happened 18 months later literally overnight and was
diagnosed as Oromandibular Dystonia. I have to take loads of drugs to
keep it manageable.
I had a botox injection 4 months ago which made no difference at all,
and am due for another one soon.
Regarding the teeth clenching, my dentist made a device to hold my teeth
apart when needed.
But what I really want to say is that after that initial collapse, I
just haven't felt right. No energy, dizzy spells, living half the time
on those nutritional drinks, and often uncontrollable tongue protrusion
which does wonders for the self esteem.
I live in Ireland now where there is a chronic shortage of neurologists
- only about 8 in the whole country I think. I live alone and sometimes
I think I've got agoraphobia - the fear of shopping and not being able
to get the words out.
Some people seem to think you're mentally retarded (I have a Ph.D. in
physics) and I've also been told 'phone back when you're sober'.
The whole thing has ruined my life, so please realise you're not alone.
I'll keep you in my thoughts and prayers.

Regards

Jim
Co. Sligo
Ireland.