Posted by: Bill Truesdell ®
05/23/2004, 11:43:37
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I've been a little out of touch with the SD community for several years now, but current events have prompted me to soul search and realize how really important you all are. No matter how many times I've tried to ignore my SD, it keeps rearing it's ugly little head up. Over the weekend, I've been reading a lot of your stuff on the BB, and I think I want to start resuming treatment. I wrote about my SD several years ago, and I just happened to look at it again, and it still seems relevant today, if not a little nieve. So I want to reproduce it here for you now.
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I have a focal dystonia known as adductor spasmodic dysphonia (AD/SD). When speaking about it in general terms, I like to call it "laryngeal (lare-in-jayl) dystonia" because the "spas" in spasmodic, like "spazz", is still considered derogatory. Me, and others, first started noticing a real problem back in 1988 when I was 32 years old. I first went to see a doctor about it at the Harbor-UCLA Hospital ENT clinic in 1990, and was at first diagnosed with an acid reflux problem. On my follow up visit that year, another doctor had a look at me and was amazed to see that I had this very rare neurological disorder instead. It's almost a miracle that this doctor just happened to see me because, back then, not very many ENT doctors were aware of it. Even today, many people still don't get the proper diagnosis, even years after it's onset. When other ENT interns there at Harbor got word I had it, they were all over me. They suggested I try a new surgery to correct the problem. In 1991, I agreed to be their "lab rat" and had, what they called back then, a "laryngeal nerve re-ineration", which was considered to be a very complicated procedure. They were able to do one side of the neck, and partially the other. The results were disappointing. Like a botox treatment, my voice improved significantly for about three months, then began reverting back to its SD state. Also at that time, I was undergoing voice therapy, which was marginally helpful, even though my voice coach was well aware of the condition. Then I tried the botox treatments. Two out of three were successful, and as usual, the benefits lasted only two to three months. After that, my botox options seemed to dry up at the time (1995), and so I decided to just accept my fate, and work with it as best I could on my own. I believe during this whole ordeal, and even afterwards, I was in denial on how seriously this was impacting my life. In 1997, my father passed away. Now, during my initial years with working with my doctors, they threw around the theory that there could be a genetic connection. They questioned me whether any of my family had any similar conditions and, at that time, I considered my family perfectly normal so I said no. But after my father passed away, I began to think about the way he actually talked, and realized that it was sometimes "strangled" and labored. And I remember as a kid, that his father always spoke in a funny "Dudley Doright" manner. So now I wonder. Left unsaid here, is all the depression, isolation, alcoholism and job losses. I keep telling myself I'm OK with this, I'll deal. And so far, I'm keeping an even keel. But it's still hard sometimes. Bill Truesdell, Los Angeles, 2000
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