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Jennifer O'Brien replied to the topic artificial voice/speech equipment in the forum Mobility Aides, Assistive Technology and Medical Equipment 2 months, 1 week ago
I see that this string of communication is from July 2021, but in addition to these ideas there is the opportunity to “bank” your voice while you still have it, thanks to support from the Team Gleason foundation. This will allow you to use your natural speaking voice when it comes time to use speech equipment. Some academic medical ALS clinics…[Read more]
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Jennifer O'Brien replied to the topic Relyvrio in the forum Diagnosis Information and General Questions 4 months ago
I began Relyvrio on Nov. 5, and aside from the bitter taste have had no problems. As previously noted, taking at room temp, and waiting a bit, seems to reduce the bitterness. (The company suggests taking before eating, and within one hour of it being prepared.)
I’ve finally gotten into a regimen that limits the mental preparation, and just do it:…[Read more]
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Jennifer O'Brien replied to the topic Swollen Feet in the forum Living With ALS 4 months ago
Thoughtful input from all here. I actually asked my doc about this yesterday, and in addition to mentioning most of the suggestions here she said one of her patients had said there are now compression socks with zippers, which could be helpful for those with ALS-related arm stiffness or weakness. (I see some posted on Amazon.) But Sonsu, suggest…[Read more]
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Jennifer O'Brien replied to the topic A brand-new sub-forum: Let's discuss mobility, technology and medical equipment in the forum Mobility Aides, Assistive Technology and Medical Equipment 1 year, 3 months ago
For pALS who maintain use of one arm, this strap could allow hugging with two arms: https://www.today.com/parents/parents/arkansas-students-invent-tool-help-stroke-patient-hug-rcna16361
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Jennifer O'Brien replied to the topic A brand-new sub-forum: Let's discuss mobility, technology and medical equipment in the forum Mobility Aides, Assistive Technology and Medical Equipment 1 year, 3 months ago
I recently discovered the Vive Reacher Grabber 32”, an “Extra Long Mobility Aid,” which enables me to pick up things off the ground that I have dropped, or even reach for clothes on my shelves. Effective at picking up a tiny pistachio shell, or a piece of paper or a sweater. Light weight. Folds in half. I keep in the basket in from of my rolla…[Read more]
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Jennifer O'Brien replied to the topic A brand-new sub-forum: Let's discuss mobility, technology and medical equipment in the forum Mobility Aides, Assistive Technology and Medical Equipment 1 year, 3 months ago
I use a <b>Nitro Euro Style 4 wheel rollator,</b> which I got through Amazon, around the house. (I splurged and paid out of pocket.) I use the seat as a tray, e.g., my laptop, for moving things from room to room. It also has a great built-in bag at the front for transporting things. It’s very sturdy and helps prevent falls. Its only limitation i…[Read more]
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Jennifer O'Brien replied to the topic ALS and falls in the forum Mobility Aides, Assistive Technology and Medical Equipment 1 year, 3 months ago
Hi, Kathy,
I’m sorry you had a fall, and hope you’re feeling OK. Foot drop certainly can cause you to trip and fall, but I have fallen many times in the last few years simply by leaning inadvertently to only a minuscule degree, so unexpectedly. A neurologist friend said it indicates that the nerves in my feet aren’t correctly signaling the…[Read more]
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Jennifer O'Brien replied to the topic ALS Patients Can Get Medicare Cover For Home Healthcare in the forum ALS Awareness and Advocacy 1 year, 4 months ago
Thank you, Dagmar!
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Jennifer O'Brien replied to the topic ALS Patients Can Get Medicare Cover For Home Healthcare in the forum ALS Awareness and Advocacy 1 year, 4 months ago
Hi, the link to Rick Lobus’s article is broken – an “oops!” message saying article can’t be found comes up.Would you be able to repost it?
<div class=”container”>
<h1 class=”page-title”>”ALS Patients Can Get Medicare Cover For Home Healthcare”</h1>
Thank you,Jennifer
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Jennifer O'Brien replied to the topic Helping someone with ALS to feel less alone in the forum A Forum for ALS Caregivers 1 year, 4 months ago
Hi, Scotty,
Is your BiL getting guidance on assisted technologies for communication that might help him if he loses his ability to type? I’m thinking re: eye gaze technology. I don’t have experience with it; just aware of it, so don’t know if it would be effective for him or not.
Best wishes to you, your BiL and your family.
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Jennifer O'Brien started the topic Sharing a tip: ultra light rollator (walker) in the forum Living With ALS 2 years ago
I’m grateful to Dagmar Munn for describing “rollators” a while back. I hadn’t heard the term. I’ve since discovered the ultra-lightweight, carbon-based rollator, made by ByAcre. It weighs 10.6 lbs. I can carry it upstairs with one hand or swing it into the car. It’s very expensive – just under $700 – but it has completely liberated me. (I do NOT…[Read more]
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Jennifer O'Brien posted a new activity comment 2 years ago
Thank you, Dagmar and Amanda! I apologize for the delayed response of three months! 🙂 I just happened upon your note!
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Jennifer O'Brien replied to the topic ALS Neuron Damage Reversed With New Compound in the forum Research Topics 2 years, 3 months ago
Hi, Richard,
I’m glad you flagged this. As the news release states, it’s early days (mouse/cell studies), requiring toxicology and pharmacokinetic studies prior to initiating a Phase 1 clinical trial, butI will certainly be following. A top university, a peer-reviewed journal.
Thank you for sharing!
Jennifer
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Jennifer O'Brien became a registered member 2 years, 3 months ago
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Hello Jennifer,
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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Hello Jennifer, 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 l…[Read more]
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Thank you, Dagmar and Amanda! I apologize for the delayed response of three months! 🙂 I just happened upon your note!
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Hello Jennifer!! No worries, there are things to learn with this forum, messageing and so on.
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Hello Jennifer!! No worries, there are things to learn with this forum, messageing and so on.