Viewing 11 reply threads
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    • #20889
      Amanda
      Keymaster

      Just being diagnosed with ALS is overwhelming! There are so many things to think about and preparations that need to be made. To complicate things even further, ALS effects each person differently, so knowing exactly what you will need is challenging. Some pALS with limb onset may need to make changes to their homes in order to be independent for as long as possible. Those modifications are expensive!! The ALS Association may have some helpful information for grants. https://www.als.org/navigating-als/resources/fyi-home-adaptations

      Did you make modifications to your home? What was the process like? Were you able to find support or resources to help?

    • #20898
      Lisa
      Participant

      My husband and I just completed a large remodel of our home that now allows me to have single level living.  The ALS Association was a tremendous resource prior to the renovation. The local chapter was able to send an occupational therapist for a home visit, free of charge,  in order to advise us before we started. (I was also approved for a $2,000 grant from the ALSA for certain modifications) The OT did an eval of our home and then sent an email with all of her recommendations.

      One piece of advice I can give is to be realistic with yourself if given the opportunity to make modifications!  I have limb onset ALS, and while I can still ambulate short distances, I do know what the future holds, and I kept the future in mind with all of the changes: roll in shower, flooring that will hold up to a heavy wheelchair, wider doors and hallways, raised toilets, room for Hoyer lift…..

    • #20901
      Nina
      Participant

      Lisa covered a lot of what I would say. I also have limbar ALS and was able to convert our living room to a bedroom in order to stay on the first floor. We had a ramp built and we’re lucky to have wide doorways and nice hardwood floors in our old Victorian home. The big expense was the bathroom. We added a roll in shower and sink and vanity that was accessible for me. The only advice I would have there if you are remodeling your bathroom do not skimp on space. The ADA provides information about the circumference needed for a wheelchair to turn. Make sure you allow that much space.

      I regret not doing more in the kitchen. I know you can add pulldown shelves and lower the sink and stove but since my husband is now on kitchen duty I didn’t want to make it uncomfortable for him. I try to keep things I need on lower shelves.

      Most everything in our house works well with the manual chair. But my power chair is a different story. It does almost no good in the bathroom because I can’t transfer from it to the commode. So that is something to consider.

      Best wishes to you!

       

       

      • #21117
        Lori
        Participant

        Thanks Lisa and Nina

        • This reply was modified 1 month, 2 weeks ago by Lori.
    • #20903
      Dave F
      Participant

      Does anyone have experience with an overhead rail system? I here good things but have not spoken to anyone with personal experience.

    • #20904
      Dave F
      Participant

      Does anyone have experience with an overhead rail system? I hear good things but have not spoken to anyone with personal experience.

    • #21108
      Lori
      Participant

      It is confusing to know all that will be needed with this disease!
      we have heard that a chair lift is only temporary once you lose upper body strength but a contractor just told us that he has one with a harness that can work.
      Does anyone have experience with this?

      Is this really possible? It would mean we don’t have to renovate our main floor to be my husband’s living space.

      thanks

    • #21110
      Nina
      Participant

      I would also be interested in the effectiveness of an overhead rail system. What does it accomplish that a Hoyer lift can’t do? Assuming you have room for a Hoyer lift, which we do.

    • #21111
      Jim Knepp
      Participant

      We have a modified overhead rail system: a SureHands ceiling lift in the toilet area of our bathroom and another in our bedroom.

      I still have minimal use of my legs: I can walk/shuffle maybe 10 to 15 feet with a death grip on a walker. I have used the toilet lift twice (I had a skin graft on a chronic ankle wound and didn’t want to put weight on the foot for a few days). It worked well to transfer me from my pwc and back.

      We have been using the bedroom ceiling lift for about 18 months. I drive my pwc under the lift, my Wife puts a sling on me, the lift takes me from my chair into bed, we take off the sling, I sleep, and we reverse the process in the morning to get me into my chair.

      The difference between a Hoyer lift and a ceiling lift to me is the difference between a manual and an automatic transmission on a car. With the Hoyer you have to use a sling, lift the pALS manually (or with an electric motor), and man-handle the lift – now weighted down with the pALS – into the proper position. With the ceiling lift the positioning has been done for you: our ceiling lift takes me from the my pwc to bed and back with no effort on my Wife’s part (other than putting on and taking off the sling) with the push of a button.

      • #21115
        Lori
        Participant

        That’s interesting Jim. Are you living all on one floor so you don’t have to do stairs?

        I will look into the ceiling lift vs house more.
        thanks!

        • This reply was modified 1 month, 2 weeks ago by Lori.
    • #21122
      MICHAEL ADACKAPARA
      Participant

      After I was diagnosed with limb-onset ALS in 2018, I added a wheelchair accessible bathroom and a closet at a cost of approximately $50K, with no outside funding.  This included:

      1.  A shower stall with a constructed bench and several grab bars;

      2.  A tall toilet with an electric bidet (electric bidet=$250; non-electric=$25);  I like the electric bidet with the warm water and warm air dry.

      3.  A grab bar by the toilet; this is of marginal use now due to my weak arms.

      4.  A washbasin with no cabinets underneath;  now I have trouble reaching the faucet (so I use a piece of PVC pipe to lift the faucet handle).

      5.  All new doors are 36″ wide.  Since my existing bedroom door was too narrow for the wheelchair,  I installed “offset hinges” for the door.  This provided an extra 1-2″; just enough for the wheelchair.

      I also realized that I cannot reach the electric switches  anymore.  So I use my dressing tool to operate the switches.

      The County of Los Angeles sent me a supplemental property tax assessment for the additions.  Luckily I was eligible for a waiver of this extra tax as the additions were medically-necessitated.

      You may be able to deduct all or part of these expenses as medical expenses if you itemize during tax preparation.  I did not know this and did not do it.

    • #21124

      MoLift Air 200 is the overhead rail system we use.  It’s on a portable track system; the frame is aluminum. Peter is put into a sling to transfer to/from and bed/wheelchair.

    • #21125

      The MoLift that has my interest now is the MoLift Quick Raiser 205.

    • #21130
      Jim Knepp
      Participant

      @Lori: We live in a single story home. In addition to the modified rail system that I referred to in my December 9 post, we have had most of our house modified to be handicapped accessible – wheelchair accessible bathroom (roll-in shower, roll-in toilet area, handicap sink, etc.); 36 inch doors; pwc-friendly tile flooring; no-sill entryways for the front door and access to our lanai; pool-lift; whole-house generator; etc. We deliberately decided to leave 2 guest bedrooms and our guest bathroom as-is (not handicap friendly).

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