Members' notice board
Welcome to the Dystonia Society members' notice board! This page contains news and notices about Dystonia Society members. If you'd like us to add something to this section please contact Phil Baldy on 020 7793 3652 or email phil.baldy@dystonia.org.uk
Comments and tips from members of the Laryngeal Dystonia group
“I spent a lot of time preparing for a job interview and sought advice from the on-line American spasmodic dysphonia bulletin board”, writes Debbie Skerrett. “I told people I had a muscle disorder that affected my voice – not a neurological disorder because I find people then assume I am going to keel over at any moment. I’m really pleased to say I was offered the job as a medical social worker!” The on-line SD Bulletin Board: http://www.dysphonia-bb.org/forums/sd/
Liz Hope explains: “I tried ‘The Journey’ – a mind, body, spirit organisation known that brings together beliefs and experience, linked to psychological therapies. I can now speak without effort and have not had any effective treatment for near two years. Whilst I would love to know why things have changed, I am content with the result”. For anyone interested, the web site is www.thejourney.com
It would be good to see much better availability of treatment for those with LD when we need it, within reasonable travelling distance from where we live”, comments Liz Armstrong. “Many patients are being denied the treatment they need to improve the quality of their lives at present due to clinics being closed to new patients and longer waiting lists between appointments”.
Ivy Black says: “My first injection was December 1988, making me the very first in the country to have botulinum toxin treatment for my condition. Since then, I’ve had 91 injections although my appointments now seem to have been extended to six months so I may have lost my voice by Christmas!
“I am a professional trainer. I always start by explaining that I have spasmodic torticollis and dysphonia (it’s good publicity for a condition I’d never heard of until it was diagnosed) and I tell the ones at the back to shout out if they can’t hear so I can mime the rest”, reports Alec Sandison.
Another useful website: National Spasmodic Dysphonia Association
http://www.dysphonia.org