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We have a brand-new sub-forum called: “Mobility Aides, Assistive Technology and Medical Equipment.”
Do you have a scooter, walker, rollator, wear AFOs (ankle-foot orthosis) or something else that helps you get around? Or, are you considering getting one? This is the place to talk about it.
Sometimes, the equipment that we need is not within our reach due to finances or inability to find suppliers. Come join this forum to find resources, discover products that will make your life easier, get tips and ask questions. Also, we can share information about tools and technologies that can benefit people with ALS. Or share your tips, ideas, suggestions and DIY solutions.
To help get us started, we’ve moved over a few related topics that were in other sub-forums and you are invited to comment or start a new discussion.
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I have had custom AFO’S for a few years and they always create pressure sores at one or two areas on my feet. My main problem is foot inversion of both feet. I will be getting new ones soon from a different clinic and will address these issues. My PT says sores are common with wearers.
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There are so many different styles of AFOs – – and feet – – that I think everyone has a different experience with them.
If they hurt your feet, keep trying out ways to help alleviate it…even maybe getting new ones. I first had to find a new brand of shoes, then add padding, take that out and finally pad my toes. Just keep looking for a solution. AFOs help keep us upright and walking – – and out of a wheelchair.
“How I Learned to Like My AFOs” — https://alsandwellness.blogspot.com/2021/03/how-i-learned-to-like-my-afos.html
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I am looking into hospital bed mattresses. Does anyone have experience with foam vs air mattresses. Also I experience lower back pain as I li e on my back, in one position, for the entire sleeping time. Any thoughts?
Steve
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Hi Stephen, I have both types. My air mattress is okay but has a few drawbacks . The main one is that there is not enough support on the sides of the bed where you need to sit before standing up . I felt that I would slide off the bed onto the floor . It has a different cover on it which is not as comfortable as a foam . And you need to set it to move at an interval you can tolerate and stay asleep with .
As for foam I have used only one , the Invacare Softform Premier which I really like . It is designed properly and does not present the problems of the other . There is a good video on YouTube.
I don’t remember the name of the air mattress , but many of them are junk from what I have noticed . Mine seems to be good quality . The key is to not stay in bed too long and change position .
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Duane,
Thank you for the information. My hubby is to the point of needing a hospital bed. He s struggling to get out of bed as his arms continue to weaken.
I worry about the size of a hospital bed. Do they come in different sizes. He has Respiratory Onset so he needs to be elevated and on his side. He is 6’ 4” and 260 lbs at this point. We’ve looked into Tempur pedic and sleep number hoping for comfort plus to be able to meet his needs, however, neither worked to sit him up high enough to sit up and swing his legs over the edge and his feet hung off the mattress. I don’t know how he will ever be comfortable on a typical hospital bed. Any suggestions or information would be greatly appreciated.Thank You
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Hi, Steve and Duane.
I use a hospital bed, courtesy of the ALS Canada Association loan pool. The mattress is vinyl-covered foam, with ROHO inserts at hip and foot level. I also have ROHO cushions on my wheelchair and lift/recliner chair. They are great at spreading out your weight and avoiding pressure points, and are available in many configurations. Check them out at roho.com or on Amazon.
I use 36×82 inch fitted bott0m sheets, and regular twin size top sheets. I also have a fixed pole and and a floor turntable to help me transfer between bed and wheelchair or commode.
Martin S
Ontario, Canada
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I have been using a rollater for 2 years and the Empower Rolling walker by Medline is by far my favorite. It has great storage, top bench where you can sit comfortably and folds easily. I got mine through Costco. Tried the Upwalker and did not work for me.
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I bought a rollator on Amazon and it makes my walking so much easier and safer. It is the Momentum Rollator, made by Medline. What I like most about it is that it is narrower than most other rollators, so it’s great going through doorways. It is lightweight, easy to fold, and rolls very easily over any type of surface. I’ve used 2 other ones and by far, I like this one the best.
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I recently got a hospital bed. The invacare premium foam mattress it came with is too soft and makes my back hurt. I now have a firm latex mattress which is more comfortable for me. The twin xl mattress fits on the hospital bed although it is a couple of inches wider than standard hospital bed mattress.
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RE Voice Banking
My voice is now fading and I just learned about voice banking. I submitted an application for technical assistance from the Gleason Team, and I’m hoping they can lead me through the process. It is very disheartening to know that my ALS Clinic never advised me about voice banking and that I should have begun the process when my voice was strong. If you have banked your voice, I’d appreciate knowing the steps required and what I should do first. Thank you.-
Hi
Although I haven’t lost my speech yet, I’m using an IPad/iPhone app called Speech Assist AAC. It has been very easy to use and allows you to customize words, phrases and sentences. Cost- $18 US.
Maggie B
Milwaukee, WI
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I recently recorded my voice through Team Gleason (grant) using Acapela (program). Once Team Gleason approves your request, you will be contacted by someone from Boston Children’s Hospital to guide you through the process. They will loan you the appropriate equipment free. You may want to do voice banking (most useful) and message banking (limited use). Voice banking will reproduce anything you type in into your synthetic voice and message banking will only reproduce the limited messages (e.g., thank you) that you banked. Please follow the instructions carefully.
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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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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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Notice the exorbitant prices of many medical hardware/software items including the infamous assortment of cushions available. While I respect competition, you have to be amazed and amused by it in my opinion. Cushions are a prime example. I have used ones that cost $500. US, but I use one that costs $40. US that works better for me to avoid pressure sores and is more comfortable. The same applies to any of this. Price is not a good indicator of value.
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Has anyone been successful in paying the difference between what Medicare will pay for a manual Hoyer lift using a prescription and the cost to buy an electric/battery Hoyer lift? The companies I’ve talked to in the Seattle area say it isn’t possible but the info I’ve seen online indicates it can be done. Thanks.
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My husband, Bill, needs an I pad or personal computer that will work with eye movements or other means. He still has his voice but it gets very weak during the day. His hands and arms are all but gone at this point. ALS with Respiratory Onset is the diagnosis. He is still ambulatory but has a motorized wheelchair for resting his head and using the Triology. What is available for him to play his computer games and read online???? Any suggestions are appreciated.
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Hello all – I have limbic ALS and now have no use of my legs. I use a Hoyer lift and a motorized wheelchair. I am very frustrated that I can’t travel because of the inaccessibility of public bathrooms. The “accessible bathrooms” work for a manual wheelchair but my motorized wheelchair is just too big to get close enough to the toilet. I can use a Hoyer lift in some hotel rooms but not in a gas station or rest area bathroom or most overnight accommodations. There must be some way to do a transfer from my motorized wheelchair into a normal accessible bathroom. Very frustrated! This small thing keeps me from traveling. Please help!
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To all the ladies reading this – I have been doing some research on the Purewick external catheter. You put the wick into place between your legs and it vacuums up the urine when you urinate. I’m just not sure how difficult it is to position the wick, and whether you can do that yourself without assistance. Also, what success have you had in motoring outside the house with the Purwick container? Thanks!
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I haven’t used my PWC much since I bought it. It’s time for service and new batteries since I will be using it more.
I called the company that sold it to me (Ability Medical Supply.). They said it would take 1-2 months to set up service and put in the new batteries. I guess everyone needs two PWCs. Fortunately, I can still walk and transfer so I ordered an ultra light PWC that folds and can be used for travel/short trips to parks, etc.
Is everyone having these long lead times just to get batteries. I thought about buying them online and paying someone to install them. They are in stock everywhere so I’m not sure why Ability is holding this up for so long.
They are paid by Medicare so I understand the approval process but I’d be willing to pay up front, then get reimbursed.
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