Recently diagnosed with SD
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Posted by: Paula G ®

08/31/2002, 10:16:52
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I am 33 years old, and Was just recently diagnosed with SD this past week. My voice started to go in and out about 12 years ago, my first 21 years of age, I never had any problems. I was treated for asthma (which I was a Misdiagnosed) My voice use to be worse, but throughout the years it has gotten better, I guess I have learned how to control it the best I can. But yet it is still there and feel depressed and embarrassed at times. I was told I have a mild to medium case of the DS, but have learned to control it well. My doctor told me I have to schedule voice therapy sessions. He says I should only need about 4 of them, and If the therapy doesnt work, then he will start me on the botox. Since I am new to all of this, Can anyone give me any advise? Are there any exercises I can do at home that will help me? And shouldnt I be on the botox regardless of weather the therapy works or not? Any help or advice I would greatly appreciate.

Thank you!

--modified by Paula G at Sat, Aug 31, 2002, 10:18:11

--modified by Paula G at Sat, Aug 31, 2002, 10:19:37







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Re: Recently diagnosed with SD
Re: Recently diagnosed with SD -- Paula G Top of Thread Archive
Posted by: Bridget ®

08/31/2002, 20:11:48
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I can't give you advice on speech therapy because I decided not to do it. But, I did have the Botox injections which, unfortunately did not work for me. However, you should try the Botox injections because I have read of the great success with it. The procedure is more scary sounding that it really is - not painful at all, just a few seconds of slight discomfort. I know how you feel about the embarrassment and depression. When I am speaking to someone who doesn't know me, I immediately tell them that I have a voice disorder, and to please ask me to repeat myself if they don't understand me. This usually puts me at ease, so speaking is easier. I also have message therapy once or twice a month to help relieve my body of stress, since stress affects my voice quality. Please let me know the outcome of your speech therapy and Botox treatment.






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Re: Recently diagnosed with SD
Re: Recently diagnosed with SD -- Paula G Top of Thread Archive
Posted by: Lib Haywood ®

09/01/2002, 13:45:33
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Paula, I am sorry to hear that you have been diagnosed with SD at such a young age. I was 57 when I started having problems. I did try speech therapy for ten months (my insurance did not pay) and I faithfully did the excercises. I would excercise my voice for an hour or two and then have a better voice for an hour or so. Overall, I did not improve. My therapist finally told me she thought I had SD. She helped me get into the BoTox research program at the National Institute of Health. I had my first BoTox injection in 1989 and overnight my voice changed. It was a miracle! Over the years I had 34 injections of BoTox and last year I decided to have the SLAD surgery. My voice is now fee of spasms and I no longer take BoTox. Every individual is different. What works for one person may not work for another. The amount of BoTox you take may differ from the amount another person may take. Over the years, I have tried magnets, accupunture, chiroprators, speech therapy. Good luck as you pursue the best route for you to take for a better voice. I suggest that you try to find a support group to help your with this. My support group has been my life line since 1989.

Lib Haywood, Charlotte, NC. AD/SD Southeast Regional Coordinator, NSDA

--modified by Lib Haywood at Sun, Sep 01, 2002, 13:47:07







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Re: Recently diagnosed with SD
Re: Recently diagnosed with SD -- Paula G Top of Thread Archive
Posted by: Linda S. Adamson ®

09/02/2002, 06:39:17
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Paula, I would encourage you on your current course of action: learning as much as you can about SD in all its different manifestations and with all the different experiences of those who live with it. I went on an intensive bout of learning immediately after my diagnosis (Jan 2002 -- I was 53 when diagnosed); I was finally sent to the right place for diagnosis and treatment due to the astuteness and persistence of an excellent speech pathologist (anyone in the Annapolis area need a referral?). From my experience with AB SD, I can affirm the value of the work with a good spch path. You will need the breathing instruction, and there are exercises that do help maximize your voice's effectiveness. But it isn't a fix. Botox, if it works for you, should bring some measure of voice improvement (from a little to near-normal functioning). Keep asking questions of all the medical professionals you see (including "How many SD patients have you treated? Of which types of SD? With what results?"), keep searching this BBd (do take advantage of the archives! ask for help if you don't know how to use them), and connect to a support group in your area if at all possible.

And, if you are able, plan to attend one of the larger events (Nov. in Miami, and Washington DC next March) where you can meet lots of others with our common disorder, and where you can hear first-hand from some of the top folks in the field who are researching and treating SD.

I wish you all the very best in what is a difficult adjustment. But know that you are not alone. That has been of inestimable comfort to me in my new life with SD.

Linda Adamson

AB SD, Annapolis, MD







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Re: Recently diagnosed with SD
Re: Re: Recently diagnosed with SD -- Linda S. Adamson Top of Thread Archive
Posted by: Cynthia Campbell ®

09/02/2002, 08:46:42
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Hi Paula,

I was diagnosed with AB SD when I was 34 (I am now 43) and it was a

*private* speech therapist that finally told me what I had. I worked with her for about 9 months - once a week and it didn't help my voice at all. In hindsight I invested far to much time and money ($90.00 per week)

on it and if I was to go back in time I wouldn't do more than 10 -15 sessions. There should be some improvement by then, if not then stop.

If it's AD you have I would strongly recommend Botox injections.

It has been my experience ... when talking to strangers that I feel

much better when I say (right off the bat!) "bear with me, I have a

voice disorder". Quite often the response will be "oh that's ok,

I can hear you just fine". Whereas when I don't say anything people

assume I speak the way I do because I chose to!! Like anyone would

want to speak the way we do! Good luck with your treatments and

try not to get too down. I get depressed over my SD quite often and

what I do is keep really really busy. I find exercise is impowering

so I highly recommend starting (if you don't already do some). A strong body is a strong mind and definitely breeds self-confidence.

Take care,

Cynthia AB Toronto, Canada

--modified by Cynthia Campbell at Mon, Sep 02, 2002, 08:48:33







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Re: Recently diagnosed with SD
Re: Recently diagnosed with SD -- Paula G Top of Thread Archive
Posted by: henry ®

09/02/2002, 13:12:57
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hello Paula,

Sorry u have our disorder and glad you found this resource. Speech therapy for me was almost no help. I tried two different therapists for about six times each. Like post of others, i found the therapy to be of a little benefit for a short time. Not at all a therapy for the disorder. For me it was a case that good speech therapy will dffinately improve your speach some but not at all in the degree of relief of our SD symptoms. I have AD, as opposed to your AD so that is a difference.

I do not use Botox. I have had SD since '93. I am three hours from a good botox doc. I am happily married and happily employed w/ no interference from my disorder, other than my own embarassment. i deal well wiht my embarassement with positive affirmations and prayer. I also get comfortable in new situtations by saying up fornt that I have a voice disorder. If I were not so well situtatied personally, and were better situtatied geographically, I woudl try Botox.

Best wishes to you and keep us posted.

Henry Mandel







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