Looking for other writers with Dystonia

Hi and Happy New Year!

I hope this is the place to look for others like myself. I’m a european writer with a few published short stories behind me and way too many ideas for new ones. Unfortunately I also have some specific challenges regarding how to physically write since I am the happy owner of a type of dystonia called Spasmodic Torticollis. It litterally, physically blocks my writing.

For eksampel I relax more in the back and shoulders when I’m leaning back about 30 degrees, but my arms stiffen and cramp more. When I sit upright arms are relaxed but I can only sit for about 20 minutes due to backpain. On the other hand, when I manage to write without thinking too much about pains the writing seems to fascilitate even less pain. Saucy.

The thing is I’m really tired of thinking about all this instead of writing the blasted ideas down :twiste:
Really there is only so much material in your own disabilities.

So I was wondering if other writers out there with some sort of Dystonia has non-medical advice I could benefit from.

Sorry about poor spelling. I’m not from around here.

  • Mattie

Mattie, Hiya!
Welcome aboard Scrivener (which, some would say, “You could live to regret it! :open_mouth:”).

You’d be surprised at just how many of Scriv’s crew are coping with one kind of disability or another. However, your reference to Spasmodic Torticollis, is the first time I’ve seen it mentioned.
Are you familiar with: en.wikipedia.org/wiki/Sensory_trick ?

Have you considered using some kind of dictation software, like: nuance.com/dragon/index.htm ?

Hope you find the kind of help you’re seeking :wink:
Take care
Vic

Hi Vic

This is great! I’m in good company then.

I have heard about the sensory trick but haven’t used it yet. Yes, I already use some dictation units but don’t know that software yet. Will look into all of it, thanks!

  • Mattie

Hi there,

I know you are looking for non medical advice, but I wonder if you have explored Botox for your dystonia. It does work well for focal dystonias.

I have. Been getting botox injections for two years now. It doesn’t take away all the pain and also it looks like the torticollis is worsening.

Botox works to a degree. Cannabis oil (CBD) does a lot to relieve the rest of the pain and some of the spasms. Simpel mindfulness meditation works and so does white tea, at time 5-htp, ordinary painkillers and… Chewing stuff - weird but doable! Still for some reason a working working position is tricky to find :slight_smile: Haven’t tried kinesio tape yet but am very eager to do so.

Mattie,
You probably already know most of this stuff, but just in case: :wink:
science.howstuffworks.com/kinesiology-tape.htm

Take care
Vic

You could utilize a tennis ball and routinely crush it, should help strengthen the weakness.