Dystonia Society
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Hi! Post-Stroke Dystonia patient here

Hi! Post-Stroke Dystonia patient here

I'm an author, screenwriter, and blogger, who's had dystonia since 2005. I'd love to see more research go into better treatments for people with post-stroke dystonia.

Despite my condition, I've been able to write and publish six novels (one of which made the New York Times bestseller list and is under option to be made into a movie), several short stories, and three screenplays (unproduced). I also love to travel. I teach courses online. I keep busy, and it helps! :)

You can find me online at debbimack.com.

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Hi Debbi, what treatment helps your dystonia most? Has it progressed over time or remained much the same? Good luck

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Hi, It's remained mostly the same. What's changed is that I'm trying to be more active in taking care of myself. I've avoided taking too many pain or other medications and focused on finding the right ones. I've also adjusted my attitude to be more accepting of my situation.

To an extent, exercises have helped me. Keeping physically active definitely helps.

I get the usual Botox injections, but I also get regular acupuncture treatments. I think acupuncture promotes better overall health.

Thanks!

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I have the same condition, post stroke dystonia in my left leg and foot... Acupuncture and botox were both unsuccessful... I take 2mg clonazepam but still suffer with generalized twitches and jerking. Can you advise which meds you take and the dosage? My neurologist is pretty stumped. They havent treated post stroke dystonia before. Thank you

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I think that's a common problem. No one has real knowledge about how to treat this, due to lack research.

I'm on 1 mg. clonazepam, once a day, and 100 mg. gabapentin, 3 times a day. It's hardly perfect, but it's better than the cocktail medications I was on.

It helps that I live near the National Institutes of Health (NIH) and have been getting my Botox injections there.

Ask your neurologist if he or she can recommend a movement disorder specialist with stroke experience.

Also, you might consider physical therapy. I did some and got a set of exercises that have strengthened my legs.

I should really write a book about this! Seriously. Would you buy it? :)

Just out of curiosity, how did you choose the username Terrapin? You aren't a University of Maryland Terrapin, are you? :)

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Hi Debbi

No I am not a University of Maryland Terrapin! I just think they are cute 🙂. This is my pen name...

I have asked to be seen by a movement disorder specialist but waiting lists are protracted... My PCP has me taking 2mg clonazepam, amitryptyline and gabapentin. A vicious mixture, I am going to try and wean off the latter two. Only clonazepam seems to help, but it is doing me no good at all (as a depressant)! I am hoping a specialist may be able to advise better!!

I did have one shot of Botox in my leg, but it didn't really do anything helpful. I don't think the muscle bundle/s to target are clear in my case...

On the walking front, how far can you get on a good day? I really struggle. My foot pulls outwards and legs stiffen up... Again, waiting for physiotherapy...

On the book front, I am not sure. Perhaps a collection of short stories? I am thinking of something similar myself... We could co-author!?

I am guessing it has taken you some time to come to terms with managing dystonia? I really am struggling... as you say, so few know about the condition...

Thank you for getting in touch

Snap snap 🙂

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It's taken me years to come to terms.

FWIW, I recently hiked two miles in Colorado. We took a trip there right before my Botox treatment. I did it the day after we arrived, which just astounded me.

I usually can do a mile or so, on any given day.

I recall a time when I couldn't have managed that.

The key thing is to hang in there, exercise to the extent you can, and don't push yourself too hard. A little bit every day adds up over the long run.

And, it sounds corny, but thinking positive helps. Watch funny movies. Read funny books. Those help, too.

Take care! :)

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That is brilliant walking Debbi.

I am missing not being able to walk normally and battling the constant pain of course!!

Hopefully a movement specialist will be able to help further... It is no way to live, stuck indoors all the time. Does your botox help you to walk better? Or is it largely down to willpower? I have ended up using crutches because the pain and twisting were so intense...

Perhaps it is early days for me (2 years post stroke...the dystonia started 9/10 months after). No one knew what the dystonia was at first...seeing that i initially had made a good recovery. Was yours delayed in onset or present immediately after the stroke? ....mine crept up on me and is now (I am told) here to stay. Unless of course for a miracle of medicine and God!

Yes, it is hard to accept limitations. I will keep trying to do what i can.

Take care and thank you

Claire

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The Botox hasn't helped my leg much, so a lot of it is willpower. Also, just not overdoing it. It sounds like the pain in your leg is worse than mine. My pain is in my hand, which makes typing a chore. Since I'm a writer, this hits me where I live. But I've begun using Dragon Dictate with moderate success. That helps a lot.

My onset was also delayed by five or six months after what appeared to be a full recovery from the stroke. That was so frustrating.

A great deal of what I've done has come down to a combination of actively seeking alternatives, accepting what I can't change, and gritty determination. I simply choose to carry on and make the best of it.

I hope this helps.

Cheers,

Debbi

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Yes. I understand Debbi.

The delay in onset when everything seemed to be okay... I just hope it doesn't get worse!!

The problems with my leg/foot have indeed hit me where it hurts. I was an avid walker and athlete.

I am going to try Tinazidine to see if that helps... I will let you know how it goes...

You are right, perserverence is everything. It is just so hard to change track when all you want is what you had pre-stroke. That is how I feel at the moment anyway.

Take care and I will keep an eye out for you 🐢🐢

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I love the turtles! :)

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