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Speech Therapy and SMA
Speech therapy is often a big point of discussion in the SMA community. I know many SMA patients who struggle with speech, and one of our columnists Brianna Albers wrote an excellent article on this subject for this week: https://smanewstoday.com/2018/05/07/sma-makes-difficult-speak-clearly-learning-to-love-my-voice/?amp
What about you all? Do any of you struggle to use your voice? Even with my booming voice, I still struggle sometimes with slurring my speech. I’ve never required speech therapy, but it’s a fascinating subject. If you do use speech therapy, I’m curious to know what it’s like and how much it helps.
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6 Replies
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After reading your post about speech therapy, I spoke to my physical therapist today about that very subject. I’ve noticed that since I started my Spinraza treatments, my breathing seems to be much better and my voice seems to be stronger. Laura, my physical therapist told me that it might be a good idea for me to ask my doctor to write a prescription for some speech therapy. She said that since I’m already working on my abdominal muscles, speech therapy would help because they focus on using your diaphragm when speaking. Working the diaphragm along with the abdominal muscles would be an added benefit to my workout.
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Very cool Michael. That’s good that you’re physical therapist is really good at explaining that kind of stuff to you. I’m glad you’re seeing some improvements.
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Although I never thought I struggled with my voice, I know it’s always difficult to communicate in noisy situations as my voice doesn’t carry. Since starting Spinraza, a couple of people have said my voice seems louder. Speech therapy was something I did when we found out I lost my swallow. We did something called Vital Stim where they tape these electrode thingys on my neck while I did exercises. At the time it didn’t seem to help much. Wondering if it would be worth another shot now that I’m on Spinraza. Other exercises included sticking your tongue out and swallowing, holding your swallow mid-swallow for a couple seconds and also emphasizing the letter K in words. Apparently it strengthens those muscles back there. Not sure if they do other exercises to strengthen voice.
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That’s cool people around you notice those things. For me as well, my family has noticed that my speech is less slurred since starting the treatment.
As far as the speech therapy exercises, are they really annoying? Based on your descriptions it seems like it’s kind of a pain haha.
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I have heard from multiple subscribers to my YouTube channel that their family members and friends have noticed differences in them after they started their treatments. I used to stutter as a child and I took speech therapy from a licensed speech pathologist for nearly 8 years. When my mother passed away in 2008, I delivered her eulogy. I told the story about my struggles with being able to speak and the difficulties that stuttering caused in my life. After nearly 8 years of speech therapy, I was able to speak clearly and with virtually no stuttering at all. My mother told me that learning how to speak clearly and without stuttering was both a blessing and a curse. She said it was a blessing because her baby could now speak without stuttering, but it was a curse because once I learned how to speak without stuttering, she said I never shut up. On my report card in school, while most kids would get in trouble for having notes stating that they talked too much, when I got this kind of note on my report card, my parents never said a word. I just wished they had been so agreeable when I would make the occasional “C” or “D” on my report card. When this happened, no amount of talking would get me out of trouble.
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Great story Michael! That last line is funny about how you couldn’t talk your way out of it when you got a low grade lol. We’ve all been there. Thanks for sharing.
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