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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]

  • Dagmar posted a new activity comment 23 hours, 10 minutes ago

    Hello Bob,

    Welcome to the forum! I am one of the forum moderators, as well as a person who is living with ALS: I was diagnosed in 2010.

    If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. You can also search for past topics or discussions…[Read more]

  • Dagmar posted a new activity comment 23 hours, 10 minutes ago

    Hello Debbie,

    Welcome to the forum! I am one of the forum moderators, as well as a person who is living with ALS: I was diagnosed in 2010.

    If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. You can also search for past topics or…[Read more]

  • Dagmar posted a new activity comment 23 hours, 11 minutes ago

    Hello Ron,

    Welcome to the forum! I am one of the forum moderators, as well as a person who is living with ALS: I was diagnosed in 2010.

    If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. You can also search for past topics or discussions…[Read more]

  • Dagmar posted a new activity comment 1 day, 18 hours ago

    Hello Samia,

    Welcome to the forum! I am one of the forum moderators, as well as a person who is living with ALS: I was diagnosed in 2010.

    If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. You can also search for past topics or…[Read more]

  • Dagmar posted a new activity comment 1 day, 18 hours ago

    Hello Janet,

    Welcome to the forum! I am one of the forum moderators, as well as a person who is living with ALS: I was diagnosed in 2010.

    If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. You can also search for past topics or…[Read more]

  • Dagmar posted a new activity comment 1 day, 18 hours ago

    Hello Robert,

    Welcome to the forum! I am one of the forum moderators, as well as a person who is living with ALS: I was diagnosed in 2010.

    If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. You can also search for past topics or…[Read more]

  • Dagmar posted a new activity comment 1 day, 18 hours ago

    Hello Bobby,

    Welcome to the forum! I am one of the forum moderators, as well as a person who is living with ALS: I was diagnosed in 2010.

    If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. You can also search for past topics or…[Read more]

  • 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]

  • Dagmar posted a new activity comment 2 days, 22 hours ago

    I know that might be a first reaction for many pALS. But in several webinars, I’ve heard that question answered with: “Besides the two drugs, the base formula that is used to deliver them is also a factor. What makes up this base has not yet been revealed by the company.”

  • Dagmar posted a new activity comment 2 days, 23 hours ago

    Hello Kim,

    Welcome to the forum! I am one of the forum moderators, as well as a person who is living with ALS: I was diagnosed in 2010.

    If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. You can also search for past topics or discussions…[Read more]

  • Dagmar posted a new activity comment 3 days, 14 hours ago

    Hello Stephan,

    Welcome to the forum! I am one of the forum moderators, as well as a person who is living with ALS: I was diagnosed in 2010.

    If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. You can also search for past topics or…[Read more]

  • Dagmar posted a new activity comment 3 days, 14 hours ago

    Hello Victoria,

    Welcome to the forum! I am one of the forum moderators, as well as a person who is living with ALS: I was diagnosed in 2010.

    If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. You can also search for past topics or…[Read more]

  • Dagmar posted a new activity comment 3 days, 14 hours ago

    Hello Kathie,

    Welcome to the forum! I am one of the forum moderators, as well as a person who is living with ALS: I was diagnosed in 2010.

    If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. You can also search for past topics or…[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.

  • Dagmar posted a new activity comment 3 days, 18 hours ago

    Nick, so sorry to learn that the diagnosis was confirmed. There is a lot of helpful information here in the forum plus, members who share information and answer questions. Let us know how we can be of help.

  • Dagmar posted a new activity comment 3 days, 18 hours ago

    Hi Jane – – there is a lot going on about AMX0035 🙂 I wrote about it in this week’s column (there’s lots of links) https://alsnewstoday.com/columns/2020/09/15/updates-research-amx0035-clinical-trial-petition/
    And we have a forum discussion ongoing here: https://alsnewstoday.com/forums/forums/topic/npr-story-on-amx0035/

  • 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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