Dystonia and Specialist Physiotherapy

Support your local Neuroscience team.

Support your local Neuroscience team.

Last Thursday, I was lucky enough to be invited to a project based, specialist neuro-physiotherapy session at a hospital some miles away from where I live. I say ‘lucky’, quite genuinely, as I’ve tried to find physios with knowledge of dystonia (privately) and failed. The NHS doesn’t seem to be overly blessed with them either, so to find myself in a room with three, plus a neurologist was wonderful. An added bonus? Two of the people in the room were Botox injectors, with a third in training.

So, a massive opportunity for real, value adding, holistic, patient care.


After a very useful 45 minutes, I walked away with my opinion unchanged, but with one major concern. How long will this programme continue?

I volunteered to be part of this project. And even though it took me nearly six hours on various bits of public transport to get there and back, I’d do it again tomorrow. Dystonia patients need to get involved in any opportunity to make improvements to care. After all, we’re experts in this rare condition. Let’s share the knowledge. If you haven’t already, sign up on a reasearch project and let’s beat this thing.

Want to find out more?

  • Talk to your consultant about the possibility of joint initiatives with other outpatient services.
  • Join the global dystonia registry via The Dystonia Society website.

About Dystonia Girl

Horse rider who loves to blog and do lots of other things too. Lives with, but is not defined by, a rare neurological condition called Dystonia.
This entry was posted in Dystonia and tagged , , . Bookmark the permalink.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s