SD WITH NO VOICE


Posted by MICHEAL PAULSON ® , Mar 06,2002,00:45   Archive
HELLO MY NAME IS MIKE AND I AM NEW TO THE BOARD.I HAVE BEENDEALING WITH SD FOR 4 MONTHS NOW WITH NO SPEAKING VOICE.ARE THERE ANY OTHERS OUT THERE WHO LOST THERE VOICE COMPLETELY? IF SO HOW LONG WAS IT BEFORE YOU GOT LIMITED VOICE BACK? I WAS ABLE TO RETURN TO WORK 9 WEEKS AGO,AND SO FAR I AM COPING.I WORK IN A LARGE HPME IMPROVEMENT STORE AT THE SPECIAL SERVICE DESK SO IT CAN BE VERY FRUSTRATING ALOT OF THE TIME.I USE PEN AND PAPER OR A HAND-HELD COMPUTER FOR MOST COMMUNICATION.I KNOW THE ASL ALAPHABET AND USE ABOUT 2% OF THE TIME.I AM LOOKING FOWARD TO SEEING WHAT OTHERS HAVE TO SAY,AND WILL DO MY BEST TO HELP IF I HAVE EXPERIENCED ANY OF THE SAME PROBLEMS.I AM ALSO INTERESTED IN FINDING OTHERS HERE IN THE HOUSTON,TX AREA TO SEE IF THERE ARE ANY GOOD SUPPORT GROUPS TO ATTEND MEETINGS WITH.IT HAS BEEN DIFFICULT BECAUSE FAMILY,FRIENDS,DOCTORS,CO-WORKERS,ECT ALL DO NOT UNDERSTAND WHAT THIS IS ABOUT.I HAVE QUESTIONED MY SANITY A FEW TIMES AND AM SEEING A COUNSELOR TO HELP KEEP ME ON TRACK.EVERYTHING SO FAR TELLS ME THIS IS GOING TO BE A LONG BATTLE,BUT WITH THE RIGHT GROUP I KNOW GOD WILL SEE ME THROUGH THIS.WHAT I HAVE SEEN HERE SO FAR IN 1 HOUR HAS TAUGHT ME MORE THAN THE DOCTORS HAVE IN 4 MONTHS.THANK YOU TO ALL WHO HAVE BEEN BRAVE ENOUGH TO SHARE THEIR STORIES.IT'S NICE TO KNOW I'M NOT THE ONLY ONE WHO HAS HAD SOME OF THESE FEELINGS. KEEP UP THE GOOD WORK!!!



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Re: SD WITH NO VOICE

Re : SD WITH NO VOICE --- MICHEAL PAULSON
Posted by Anne Brett ® (Moderator-AB,Anne Brett), Mar 06,2002,04:44 Top of Thread Archive
Hi Michael

Glad you posted and Welcome to the SD Bulletin Board! Just a couple of comments that you might consider. I mean no disrespect toward any of your physicians regarding the diagnosis and treatment of your SD, however, you're right there in Houston and would have access to seeing one of the best world known physicians for the treatment of your SD. That would be Dr. Joseph Jankovic at Baylor University of Medicine. For his complete listing, see the National Spasmodic Dysphonia (NSDA) website http://www.dystonia-foundation.org/NSDA> or the Dystonia Medical Research Foundation website http://www.dystonia-foundation.org/ There is a support group in Houston and for the contact information and support group leaders, etc., you'll find them listed on one of the above websites as well.

Since you work in a noisy surrounding, you might think about using a voice amplifier. This alleviates your trying to 'strain' your voice to overcome surrounding noise situations and makes communication much easier. Our 'natural' instinct is to attempt to overcome noise and with SD, it's just impossible to do.

Good luck! You aren't loosing it. SD is a focal form of dystonia and dystonia is a neurological movement disorder. Our muscles spasm and we have absolutely no control over these spasms!

Anne
Officer
International Dystonia On-Line Support Group
www.dystonia-support.org

--modified by Anne Brett at Wed, Mar 06, 2002, 04:46:06




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Re: SD WITH NO VOICE

Re : SD WITH NO VOICE --- MICHEAL PAULSON
Posted by Robin Stull ® , Mar 07,2002,02:26 Top of Thread Archive
Micheal -

Welcome to the SD bulletin board. Anne gave you alot of good information, I really don't have anything to add - except Hello! and keep asking questions. It seems like you are on the right track. The NSDA website that Anne mentions also has a listing of support groups, BTW.

I wish you well, Robin (AB/S. Calif.)




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Re: SD WITH NO VOICE

Re : SD WITH NO VOICE --- MICHEAL PAULSON
Posted by john s. beeman ® , Mar 08,2002,16:17 Top of Thread Archive
Michael -

The first physician I saw for treatment of SD was Dr. Joseph Jankovic at Baylor. They were very good - just too far from my (then) home in Indiana to see and, eventually - I found a physician in Cincinnati Ohio to provide my botox treatment. Baylor is a good place for you to go, I think. John


--modified by john s. beeman at Tue, Mar 12, 2002, 15:48:55




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