Jennifer O'Brien

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]

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]

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]

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

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]

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]

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]

Thank you, Dagmar!

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

</div>

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.

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