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    • #14235
      Dagmar Munn
      Keymaster

      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.

    • #17766
      doug wilkins
      Participant

      look up Solo Rider golf carts. I have been using one for 6 months. it keeps me playing and its great for just getting around outside.  the seat rises up to help you stand and swivels to get you out.

    • #20043
      Jackiekrnbsnals
      Participant

      Is an UP Walker any better than a standard rollator or walker?

    • #20044
      Dagmar Munn
      Keymaster

      What is the “UP” ??

    • #20066
      Bev
      Participant

      <p style=”text-align: left;”>I have an upwalker for sale in Ontario Canada.  Its made in California. I had to go across the border to pick it up. Not available in Canada. If interested text me 519-988-9111</p>

    • #20073
      Duane
      Participant

      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.

    • #20074
      Duane
      Participant

      ‘UpWalker’ is just a brand name. There are many similar ones on Amazon and elsewhere.

      • #21658
        Perfecto Cobian
        Participant

        I bought thin rubber insoles to use with my AFO. You can also try removing the inner sole of the shoe and use it overt the AFO.  Also NB has mesh shoes that stretch and are very comfortable when using the AFO.

    • #20090
      Mary Tiknis
      Participant

      I have found that the higher walkers that keep you up right do not work outside every bump  that you encounter makes the upright walker tip I like the lower Rollator is much more convenient and it doesn’t tip when you’re walking outside

    • #21487
      stephen fishman
      Participant

      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

      • #21509
        Duane
        Participant

        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 .

        • #21512
          stephen fishman
          Participant

          Duane,

          thanks for you r reply.

          Steve

        • #21514
          Mary
          Participant

          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

           

           

        • #21533
          Duane
          Participant

          Mary, there are many available on the internet and from local medical equipment stores. It requires set up, so a local store may be the best option.

        • #21538
          Duane
          Participant

          Mary, I suggest you contact ALSA (ALS Association ) who can give you better advice than I. They may send a nurse to evaluate your needs and help you with this .

        • #21667
          Martin Seekings
          Participant

          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

      • #21545
        Maggie Broeren
        Participant

        Hi Steve,

        it took me three mattresses until I slept comfortably.  I’m using an alternating air flow mattress, provided by our hospital bed vendor. It cost approx $1000… worth it now that I’m sleeping better with only 1-2 turns p/nigh5.

        Maggie B

        Milwaukee WI

    • #21502
      Angela
      Participant

      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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    • #21503
      Carolyn Barry
      Participant

      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.

    • #21522
      Kris
      Participant

      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.

      • #21527
        stephen fishman
        Participant

        Kris,

         

        thanks for for your response.  I got an air mattress with a firmness adjustment and it works fine.

        steve

         

    • #21529
      Sandra
      Participant

      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.

      • #21546
        Maggie Broeren
        Participant

        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

         

        • #21550
          MICHAEL ADACKAPARA
          Participant

          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.

    • #21562
      Jennifer O’Brien
      Participant

      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

    • #21589
      Jennifer O’Brien
      Participant

      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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    • #21595
      Duane
      Participant

      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.

    • #21598
      Jennifer O’Brien
      Participant

      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

       

    • #21652
      Kris
      Participant

      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.

    • #21669
      Mary
      Participant

      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.

    • #21672
      stephen fishman
      Participant

      My ability to transfer is very dimfficult. Will appreciate input about a homer lift.

      steve

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