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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.

I’ve…[Read more]

Why would you NOT??  I lost my voice quickly and found out about voice banking when it waa too late for me.  If I knew about voice banking when I still had a voice, I would have JUMPED at the chance.

I get the flu shot every year, way before I got ALS.  Sometimes I get a flu strain anyway, often not.  CVS close to my home has been out of the vaccine for 55+ but as soon as they get it, I will be in there. I think it’s important for anyone with a chronic disease, and certainly anyone with respiratory issues, to get the vaccine.

Lowell,

Same for me. I really can get difficult to understand, and other times I’m spot-on. I just never sound like I used to.

I see from the discussion that the stage of speech impairment is critical to this decision. In August 2019 I was still able tor read phrases more or less naturally and I’m glad I did. it’s nice to have my own voice on my SGD. Although I’m still able to talk with varying degrees of intelligibility.

I live in Arizona. The Ariz Chapter has monthly support groups, which have been virtual since the start of the pandemic. While virtual meetings are not as conducive to making connections with others as an in person support group would be, still I like attending not only to learn something new, but also because it makes me aware that others are…[Read more]

I spent some time recording phrases listed in a three ring binder that Childrens Hospital in Boston gave me. BTW, I’m 65…. MGH gave me a referral there and CH of B set me up with a recording device and an account for uploading.

So over the course of five Saturday mornings I recorded over 3100 phrases, exclamations, questions, etc. Even a clip…[Read more]

Been on it since diagnosis sporadic limb onset in Jan 2018 (symptoms started Jan 2015 ) was tablet now liquid peg  form. No side effects .

Yes! I always do.

I had mine yesterday.

Carl, I also have a loss of taste but never attributed it to the Riluzole. I’ve been taking it since my diagnosis 2-1/2 years ago, but only noticed the loss of taste this past spring. I thought it could have been a covid symptom, but it was the only symptom I had.

I’ll bring it up with my neurologist during my upcoming visit.