@dagmar-munn
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Dagmar replied to the topic ALS Support Groups in the forum Diagnosis Information and General Questions 16 hours, 52 minutes ago
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.
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Dagmar replied to the topic To voice bank or not voice bank in the forum Mobility Aides, Assistive Technology and Medical Equipment 16 hours, 55 minutes ago
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]
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Dagmar replied to the topic Satisfied with your care? in the forum Diagnosis Information and General Questions 17 hours, 25 minutes ago
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]
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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]
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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]
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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]
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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]
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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]
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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]
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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]
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Dagmar replied to the topic To voice bank or not voice bank in the forum Mobility Aides, Assistive Technology and Medical Equipment 2 days, 18 hours ago
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]
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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.”
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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]
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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]
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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]
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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]
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Dagmar replied to the topic Diagnosis and ALS in the forum Diagnosis Information and General Questions 3 days, 18 hours ago
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.
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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.
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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/ -
Dagmar replied to the topic Massage Therapy & Acupuncture: Have They Helped Your ALS? in the forum Living With ALS 3 days, 18 hours ago
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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Thank you for the warm welcome Dagmar.
I’m looking forward to going through the forums.