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Just Dystonia??
| Profile | Posted by | Options | Post Date |
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Alan | Report | 17 Apr 2007 14:54 |
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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 |
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Ladylol Pusser Cat | Report | 17 Apr 2007 11:23 |
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your gonna be fine girlie cause we all positive for ya xxx |
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Caz Nr Heathrow | Report | 17 Apr 2007 11:01 |
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n |
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Cumbrian Caz~**~ | Report | 15 Apr 2007 18:38 |
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All the very best caz that the op has helped, Caz xxx |
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(¯`*•.¸JUPITER JOY AND HER CRYSTAL BALLS(¯`*•.¸ | Report | 15 Apr 2007 18:36 |
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aww bless her,lots of love to caz.sending my prayers.xxxxjoy |
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Ails from NI | Report | 15 Apr 2007 18:30 |
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nudged |
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Caz Nr Heathrow | Report | 29 Mar 2007 11:15 |
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pm'd you Caz |
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Ails from NI | Report | 29 Mar 2007 11:06 |
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No problem, take care. Let me know the date of your surgery & I'll add you to my prayer list. Ails x |
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Caz Nr Heathrow | Report | 29 Mar 2007 10:59 |
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that's very kind of you thanks Caz |
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Ails from NI | Report | 29 Mar 2007 10:56 |
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pm me if I can be of further assistance to you. Love Ails x |
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Caz Nr Heathrow | Report | 29 Mar 2007 10:51 |
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Ails Didn't know about the 6 month rule, thanks for the warning. Saves me disappointment hearing it from a doctor. Caz |
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Ails from NI | Report | 29 Mar 2007 10:50 |
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Caz - my head wasn't shaved - they cut the scalp & peeled it back. I lost VERY little hair. Ails x |
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Caz Nr Heathrow | Report | 29 Mar 2007 10:47 |
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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 |
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Ails from NI | Report | 29 Mar 2007 10:42 |
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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 |
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Caz Nr Heathrow | Report | 29 Mar 2007 10:40 |
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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 |
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Cumbrian Caz~**~ | Report | 29 Mar 2007 10:36 |
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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 |
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Caz Nr Heathrow | Report | 29 Mar 2007 10:36 |
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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 |
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