Jennifer O'Brien
Forum Replies Created
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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 have speech pathologists who can coordinate the process with the foundation, but Team Gleason, working with Harvard, can also provide patients and their clinicians anywhere in the U.S. with the guidance to get this done through them. Banking your voice takes an hour or less, and involves reciting pre-established statements, under the guidance of the ALS speech pathologist or some other expert.
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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: I take it before breakfast and dinner, and take significant sips without stopping until I’ve swallowed about nine times, then proceed again with the small amount remaining, with one or two breaks. It’s prepared in less than 8 oz. of water.
Wishing all of you the very best.
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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 your check with your doc, too.
Good luck!
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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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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 rollator. I see that it’s on Amazon.
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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 is that it is too heavy for me to lift myself into the car. Others can lift it, but it’s not light for them either. For that reason, I splurged (again) and also bought an <b>ultra light, carbon based rollator called ByAcre</b>, from Sweden, which I’ve used every time I’ve gone out for the last year. I returned the “organizer” bag that hooks in the front because, while stylish, it kept slipping off. I can easily whisk it Into the car. The only limitation is that it is not as sturdy as the Nitro. I’m very light – 5’7, 120 – and feel like that’s a good weight for it, though it looks on their website like bigger people use it, too.
I want to mention another product that could be great for patients who maintain strength in their legs and have the space to store it and access to an outdoor environment to use it in. It’s called the <b>Alinker</b>, from Canada. It is a three-wheeled walking bike that has been promoted by actress Selma Blair, who has severe MS. I have not bought one because my living arrangement would make it challenging to use, but for people with slow progressing ALS it could be so liberating for getting outside on paved or dirt paths. It’s elevated, so the rider is at the same level as walking companions. I know ALS patients in the UK, at least, have done fundraisers via Alinker to purchase them. https://www.thealinker.com
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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 brain. I mention this only to urge you to be aware of this possible risk.
<div>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. Its very sturdy and helps prevent falls. Its only limitation is that it is too heavy for me to lift myself into the car. Others can lift it, but its not light for them either. For that reason, I splurged (again) and also bought an <b>ultra light, carbon based rollator called ByAcre</b>, from Sweden. I returned the “organizer bag that hooks in the front because, while stylish, it kept slipping off. I can easily whisk it Into the car. The only limitation is that it is not as sturdy as the Nitro. I’m very light – 5’7, 120 – and feel like that’s a good weight for it, though it looks on their website like bigger people use it, too.</div>
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<div>I want to mention another product that could be great if you maintain strength in your legs and have the space to store it and access to an outdoor environment to use it in. It’s called the <b>Alinker</b>, from Canada. It is a three-wheeled walking bike that has been promoted by actress Selma Blair, who has severe MS. I have not bought one because my living arrangement would make it challenging to use, but for people with slower progressing ALS it could be so liberating for getting outside on paved or dirt paths. I know ALS patients in the UK, at least, have done fundraisers via Alinker to purchase them. https://www.thealinker.com</div>
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<div>Good luck to you!</div>
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<div>Jennifer</div> -
Thank you, Dagmar!
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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?
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<h1 class=”page-title”>”ALS Patients Can Get Medicare Cover For Home Healthcare”</h1>
Thank you,Jennifer
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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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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