Spasmodic Dysphonia Bulletin Board

Nice to see that there is a place to ask questions and just talk to others that understand. Hopefully you won't mind answering a couple of questions too!

I was dx'ed with SD back in February in Denver by an ENT and my neurologist. Crazy squeaking sounds, frog demon voice, voice breaking apart, and sometimes barely audible..all changing like in the middle of a word. I also have some sort of Bell's palsy going on, that they said was bulbar involvement that is why sometimes in the combination of the SD, I cannot pronounce stuff and end up sounding like I am ummm retarded or partially deaf. Anyone else have that too? Back then it was horrible, it could go on for like up to 6 hours at a time..but sometimes as little as a few minutes here and there. I was offered botox shots, but needed the neurologist clearance before I go ahead with it...so ended up putting it off. They are still trying to figure out what my movement disorder is, my arm flinging/jerking, leg/arm/face weakness etc. That is another question...How many of you also have another movement disorder?

Anyhow, over the months I thought I was getting better with my voice only because the episodes though constant were shorter in duration and not lasting hours and hours at a time. I can still tell my voice doesn't sound the same as I did before all this started. I am incredibly grateful for anytime I just have that as the problem and not all the other associated weirdness. Up until this past week where it became worse again, like I worry that I wont be able to make a simple phone call on my own without it happening :( I am reconsidering the botox shots and would like to know about people's experiences with it. Just reading about Botox initially scared me, so scared that it could make all of it worse or something...not sure if it is justified or not.

I have realized that although the movement disorder affecting the rest of my body is very annoying and disabling..the voice thing takes away my ability to connect with my family and friends. It is the worst emotionally..you lose out on just asking how a loved ones day was. How do you guys cope with that? Have you tried writing notes to each other?

This is the first time I have reached out to talk to people about all of this :) I think up until now, I had a hard time accepting this, feeling so young and alive at the prime age of 34. That it could just not be happening, that I am too young for it etc etc. I think now I have started to move towards acceptance and want at least one thing treated if possible.

I thank you for your time reading this and hope you accept me into your club :)