General Chat

Hi folks, I have a rare movement disorder similar to Parkinsons Disease called Dystonia (my type is known as Generalized Dystonia). I know of two others on this site who also have the same prob and I know just how isolating it can be; either through the obvious inability of not being able to get around or the embarrassment it causes when you are out and about. I’m not after the sympathy vote but would like people to become aware of this painful condition. And yes I can and do laugh about it. You need a warped sense of humour, believe me. Please visit http://www.dystonia(.)org(.)uk/ and spread the word. I’m actually having an operation to relieve my probs in April, (I will never be cured of it), and want to tell anyone out there with Dystonia they can contact me for support. Thanks for listening Caz

Caz, How caring of you to post this, I know a young Mum with the condition. She had a serious neurological op which helped her a little Good luck Caz xxx

Hi Caz Sounds like she had what I'm having, DBS?? Deep Brain Stimulation. Hope it helped her get on with her life Thanks for the good wishes Caz

Good luck with the surgery, Caz. I had brain surgery last year. If you get your hair permed or coloured get it done about 2 weeks before your surgery as you won't be allowed to get it done for 6 months afterwards!! Ails x

Thanks Ails, Once I knew I was on the list for sure I treated myself to highlights but have since had it cut short to lesen the 'trauma'- you girls know what it's like to loose your crowning glory, lol. I've got a glam wig too!!! Thanks for the good wishes much appreciated Caz

Caz - my head wasn't shaved - they cut the scalp & peeled it back. I lost VERY little hair. Ails x

Ails Didn't know about the 6 month rule, thanks for the warning. Saves me disappointment hearing it from a doctor. Caz

pm me if I can be of further assistance to you. Love Ails x

that's very kind of you thanks Caz

No problem, take care. Let me know the date of your surgery & I'll add you to my prayer list. Ails x

pm'd you Caz

nudged

aww bless her,lots of love to caz.sending my prayers.xxxxjoy

All the very best caz that the op has helped, Caz xxx

n

your gonna be fine girlie cause we all positive for ya xxx

Sorry but it isn't 'Just Dystonia', there are various forms of Dystonia. I have been suffering from Spasmodic Torticollis which is a form of Focal Dystonia since 1993. By 1997 I was so bad that my left ear was on my my left shoulder, which caused a curvature of my spine. I had an operation in Oct 1997 which was the first stage of getting back to a more upright position. I then had daily Physio for 6 months to help strengthen the muscules & regain my posture. I am still in pain from it but not as bad as what it was in the early days. I still attend The National Hospital for Neurology & Neurosurgery in London every 3 months for Botulinum Toxin injections to help keep it under control. Alan

Hi Alan I am so glad you have added to this thread. I understand honest. Mine started as torticollis in 1974. Now I have it all over which is why I’m taking a chance on DBS-about which I’m sure you’re aware. I am only too well aware how painful it can be and I too have had botox -in my neck shoulders and face every three months since 1996 -also at the National, what a coincidence!!! Prof Bhatia by any chance?? The thread was named “Just Dystonia??” to draw attention, which it has obviously succeeded in doing, not to belittle the condition. And you’ll note that I have included the Dystonia website for EVERYONE to become acquainted with the condition. As the thread suggests I am more than willing to talk you on a more personal level away from the boards and support you in what ever way you feel would be beneficial if that is of any help. We “Dystonics” must stick together, lol (sorry my warped sense of humour and Lord knows we need one!!!) PM if you like but bear in mind I'm off to hospital late THURSDAY morning. I am truly sorry if you felt I have belittled the condition This was not my intention Take care Caz xxx

Thanks for posting this thread Caz, I didn't know what the condition was, but didn't like to ask. Good luck with your op.

Ask away Maggy.,...PM if you like but bear in mind I'm off to hospital late THURSDAY morning. The more people who get to know about this often misdiagnosed condition the better!! Take care Caz xx