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I was diagnosed early in 2019 and wish I had started voice banking immediately. Two years after symptoms, my voice already sounds different and it is a strain to get some words out. I do breathing exercises daily but yet my voice grows weaker. I have opted to start banking my voice with a new service called voice keeper ( https://thevoicekeeper.com ). I like it because it has both a webpage interface that I can use with my computer microphone as well as having an iPhone app where I can use the iPhone microphone. Free to record your voice. You just need to set up an account. To use your voice, they have several options… I will wait until I need to use my voice to purchase my voice recordings ($299) so that I buy the correct format for whatever speaking device platform I will eventually be using.
Dagmar…. Without riluzole, I’m not taking any prescription medications. Tons of over the counter supplements. I do wish I could handle the drug, but my breathing was severely compromised. I’m taking another look at radicava.
When I started on Rilutek (brand of Riluzole), I made it to the three week point. With the full dosage, one in the morning one at night, I started experiencing very labored breathing and shortness of breath. And though my neurologist said this was not a side effect of the drug, my web MD research shows that it is Indeed an uncommon side effect. Lucky me. My breathing returned to Normal two days after stopping the drug.