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Hi Tom, I agree – – the Arizona ALSA has great virtual support groups. The new Peer-to-Peer Support Group Facebook page is a good way for us all to keep in touch too.
To clarify my previous answer a bit more…
It is perfectly fine for one to spend the time recording if you want to have “your voice” coming out of a particular device. But, in the early days of the voice banking concept, auto-generated voices were sub-par. Nowadays, we have many devices speaking with improved and pleasant “voices.” Our Alexa,…[Read more]
I am very satisfied with the care I receive from my neurologist and her ALS Clinic team. They have been seeing me for 10 years – – for about 8 years I went every 3 months, then every 4, for the past year I am on an every 6 months schedule. That’s because my progression has plateaued with minimal change… and I don’t have questions for them.
Debra, I have experienced ALS speech issues: almost losing my voice, being given a slate to write on, checked out on Tobi and told to live with it. Never the less, I researched and found that are ways to “keep on talking.”
I remember when voice banking first came to be, about 7-8 years ago. The big marketing/promo was that it was a way to “keep”…[Read more]
Hello Lucy – – You haven’t mentioned getting a genetic test to see if you do have the gene for ALS. That way, you can rule out familial ALS.
Pre-ALS, I used to get a massage once a month to support my wellness – – I was extremely active and the massages were beneficial both physically and mentally. Post-ALS, I continued these for about a year… hoping the massage would help relieve my increasing muscle stiffness – – but sadly, I quit going. Like Cate, I could no longer climb onto the…[Read more]
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