Spasmodic Dysphonia Bulletin Board

Periodically over the years on this BB, we've had discussions regarding celebrities who have SD or other disabilities and ... "wouldn't it be nice if someone would speak out on our behalf?"

I had some noteable experiences pertinent to that subject, over this past week -- worthy of sharing. Enjoy:

The movie "Ray" is a **must see**. (Bio on Ray Charles). It's hard to watch sometimes, but as a lifelong fan of his music, I saw insights in the movie about disability, beyond the obvious. Related to any disability. As he lived without sight (and tuned his musical skill and other senses - to the extent of never using a cane or a dog), there is a message regarding developing our other senses when we lose one. I saw the movie last night and will see it again soon. The people who put that movie together brought out some keen elements of what happens (subtlely) when one of the senses is lost. Watch the body language. Which he can't see. He only hears the voices. We, the audience, can see what goes on while he can't.

Additionally last week, several of us SD volunteers worked a professional Voice Conference (for otos and SLP's) in San Francisco, exhibiting for the NSDA. Two of us attended a short medical presentation by Dr. Blake Simpson (oto in San Antonio, TX) on his particular Botox technique and, specifically, two of his patients who are C&W singers -- or used to be, before they lost their voices to SD.

I'm not revealing anything private here, even though the doctor never mentioned his name - just showed his picture (clearly recognizable) on the video and played his voice. It was Johnny Bush, who has already addressed his SD publicly several years back and received the Annie Glenn Award (named for John Glenn's wife, who is a stutterer) from the National Council of Communicative Disorders, due to his SD. The award was reported in the NSDA newsletter.

Dr. Simpson played tapes of "the singer", both before and after Botox, and then commented that Willie Nelson had left a message for Johnny on his Voice Mail, after Botox, saying how good his new voice sounded. Quite a testimonial, coming from a legend! Johnny Bush is finally able to sing professionally again - getting his voice back after around 30 years. Kudos to Johnny and Botox and Dr. Simpson, and perserverance.

Here's some biographical info on Johnny Bush, which reflects his struggle with SD. It's quite interesting:

http://www.johnnybush.com/about.php

The other one is Louise Lasser. I hope everyone read the obituary and tribute to Midge Kovacs, who was instrumental in early advocacy for SD'ers and founding the NSDA. There was a quote from Louise in the obituary. I've often wondered what happened to Louise Lasser (even though I knew she had SD), as I was a huge fan of her TV hit, "Mary Hartman, Mary Hartman," in the mid-70's. It was a universal favorite then. The very first evening soap opera - way before "Northern Exposure" or reality TV. Everyone I knew watched it. Louise has had SD for years but did attend Midge's group years ago. She's still in New York.

Re perspective, I'm sure everyone knows who Ray Charles is (and probably Willie Nelson), but most younger folks may not know who Johnny Bush or Louise Lasser are. They "went away" (dropped out of sight) when their SD began, back in the 70's.

"Voice is identity." That goes for celebrities also, which is why it can be difficult to find a famous SD'er to represent us and our disorder. They generally disappear, if their voice was their identity (which it usually is) and if it's too much trouble to get it back. Fortunately, some of them do come back after effective treatment.

--Lynne

PS: Also, celebrity-wise, there was an insightful comment on "The View" (morning talk show) last Monday, following Ashlee Simpson's gaff on "Saturday Night Live" (when her lip synch didn't synch). The rationale for the screw-up was acid reflux (GERD), so she was supposedly hoarse.

Thus, "The Ladies of The View" talked about acid reflux Monday, and one of the hosts (Joy Behar) said: "Heaven forbid anyone should ever have a disease that a celebrity doesn't have -- otherwise there's no cure!"