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tomd started the topic cold and swollen feet in the forum Living With ALS 2 years, 2 months ago
One of my recent ALS symptoms is cold and swollen feet. I understand that these symptoms are likely due to lack of movement.
I’m dealing with this condition by wearing compression socks in the day, elevating my feet above my heart a couple of times a day, and having my caregiver give me foot massages.
I wonder if others have this condition and…[Read more]
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tomd started the topic Anyone use Alexa to make phone calls in the forum Living With ALS 2 years, 5 months ago
I’m an ALS patient who lives alone. This past weekend I fell down in my bedroom. I wasn’t hurt but couldn’t get up due to weakness in my legs and arms. Luckily I keep a phone on the floor just in case of such an occurrence. I was able to call 911 and the fire department came out and put me upright.
I’m thinking about getting some amazon echo dots…[Read more]
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tomd replied to the topic Book recommendations in the forum Living With ALS 2 years, 5 months ago
Tuesdays with Morrie is a memoir by author Mitch Albom about his visits to his former sociology professor Morrie Schwartz as Schwartz gradually dies of ALS.
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tomd replied to the topic How I Learned to Love My Rollator in the forum Living With ALS 2 years, 5 months ago
I took Dagmar’s recommendation and got from Amazon a Drive Nitro Euro-Style Aluminum rollator Standard Height. I like it a lot. I use it around the house and it helps me walk better and gives me stability. The height is adjustable from 33.5 inches to 38.25 inches. I second Dagmar’s caution to be careful if you are sitting in it and try to get up…[Read more]
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tomd replied to the topic Home renovations and ALS in the forum Mobility Aides, Assistive Technology and Medical Equipment 2 years, 7 months ago
One modification I made to my bathroom that I’m glad I made was to install a toilet seat bidet. It’s great when you have weak arms and loss of dexterity in your wrist and hands.
I had to get an electrician to install an outlet next to the toilet and then hire a plumber to install the seat. Well worth it
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tomd replied to the topic ALS and driving in the forum Living With ALS 2 years, 7 months ago
I can still drive but its hard. My difficulty is not so much my legs but my arms, I can’t stretch them out in front of me. I have little turtle arms now, so it’s hard to shut the door and hard to reach for the steering wheel, I put the seat far forward toward the steering wheel and lean into it to get my hands on the wheel. Once I get my hands on…[Read more]
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tomd replied to the topic There's got to be something for my soul somewhere. in the forum Living With ALS 2 years, 7 months ago
“Let nothing disturb you
Let nothing frighten you
Everything passes
But God does not
Patience obtains all
Whoever has God lacks nothing
Only God sufficies
St. Teresa of Avila
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tomd replied to the topic ALS Support Groups in the forum Diagnosis Information and General Questions 2 years, 8 months ago
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]
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Amanda and
tomd are now friends 2 years, 8 months ago
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tomd posted a new activity comment 2 years, 10 months ago
Amanda, thank you for your kind welcome to the forum. I’m learning a lot from reading the forum posts, and can relate to a lot of situations being encountered by others, and their input and thoughts and advice are very helpful. Thank you for your efforts
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tomd posted a new activity comment 2 years, 11 months ago
thanks for your welcome. I live in Tucson, newly diagnosed in May and June. Seeing Dr. Horak. Attended a virtual class last night sponsored by the Az ALS chapter and moderated by Amber Montanez. I was surprised at how many newly diagnosed ALS patients there are in AZ, and the variety of symptoms among patients. I have a lot to learn about ALS.…[Read more]
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tomd became a registered member 2 years, 11 months ago
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Hello Tomd,
Welcome to the forum! I am one of the forum moderators, as well as a person who is also 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. If you have any questions, concerns, or even…[Read more]
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thanks for your welcome. I live in Tucson, newly diagnosed in May and June. Seeing Dr. Horak. Attended a virtual class last night sponsored by the Az ALS chapter and moderated by Amber Montanez. I was surprised at how many newly diagnosed ALS patients there are in AZ, and the variety of symptoms among patients. I have a lot to learn about ALS.…[Read more]
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Hello Tomd, and welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive history of ALS and we know that we have a genetic mutation in the SOD1 gene. I lost m…[Read more]
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Amanda, thank you for your kind welcome to the forum. I’m learning a lot from reading the forum posts, and can relate to a lot of situations being encountered by others, and their input and thoughts and advice are very helpful. Thank you for your efforts
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