I finally got it together to upload my MG videos to YouTube. Last night’s discovery of something called spasmodic dysphonia made me want feedback from people in the know. So far a couple of medical people have agreed that’s what is wrong with my voice. When I slurr my words and sound drunk, that’s dysarthria. When the words break up into pieces, that’s spasmodic dysphonia. I hope to get lots of feedback from people who know about voices.
I started the channel in December 2011, but never did anything with it. It’s a real blast from the past to see the pic of me from then. Since that time my MG has not been aggressively treated, and I am going downhill fast. In that time, I also got West Nile Virus, had two major operations, got diverticulitis, colon to organ fistulas and the giant incisional hernia, plus assorted infections and weird health issues. I have gained over 100 pounds once I quit eating low carb. I look a lot more than three years older!!!! If you read my blog regularly, you know I feel sick pretty much 24/7. Seeing my MG on video has given me a new appreciation for all I go through. I am a tough old lady!
I have often wished I could share what I sound like now that my voice is broken. It gets whiny and breathy. Then out of the blue, it gets better for a few minutes, hours or days. Heather just gave me her old digital camera. I look forward to making more videos. These help docs to understand more than my descriptions of what’s wrong. I also think no one believes me when I sound OK. My voice changes many times a day. Sometimes words don’t even come out. Sometimes it sounds waaaaay worse than what I have done videos of. I also included video of my face and tongue fasciculations. They usually happen just before all MG hell breaks loose. Sometimes I get worse to the point of becoming paralyzed. So much fun! NOT!!!! I try to stay amused at how absurd it all is rather than hang out in a place of despair.
This is one time I really, really want to get comments back on what you hear and see. Yes, I know I am funny looking. No need to point that out. Have you ever heard anybody talk like this? Do you know anybody with MG, dysarthria or dysphonia?
email@example.com or leave a comment on the blog. Thanks 🙂