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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 8 months, 1 week 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.

      • #21722
        Maggie Broeren
        Participant

        We have three overhead tracks for my sling- one in bedroom, one in bathroom, and one above a recliner in living room.  They were professionally installed although my spouse measured and marked the ideal places on the ceiling where tracks would be installed.  They are great and super functional – providing safe transfers and reducing stress on caregiver’s backs.

    • #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 8 months, 1 week 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).

    • #21470
      Kris
      Participant

      After my diagnosis in August 2021 my husband and I moved to a one-story house and are now trying to plan bathroom modifications for when I am in a wheelchair. We have been assuming I would use my power wheelchair when I can no longer shuffle along with walker but noticed Nina said she used manual wheelchair in bathroom due to difficulty in transferring from power wheelchair to toilet. Have others also found that to be the case? That would greatly affect our bathroom remodeling plans.

      • This reply was modified 6 months ago by Kris. Reason: Missing word
    • #21484
      Linda Lennon
      Participant

      I have an additional question, I have limb onset and getting more difficult especially when traveling on the road or using public restrooms with out family rest room. I have only my husband to help so how do you handle using the commode when you are no longer able to lift yourself up.

    • #21488
      Duane
      Participant

      Linda, I have a similar problem. We use a portable urinal. They are used by truck drivers and come with a female attachment. Amazon sells them. Otherwise, plan your trip around your BM as well as you can, and buy an elevated toilet folding frame. I cannot get up from a low seat without armrests to use to push myself up since my back is weak. I hope this helps

    • #21524
      Len Jax
      Participant

      Hi Kris,

      I was diagnosed in 2014, and we built a ranch, ADA-compliant house in 2016.

      The bathroom is one of the most important rooms for a person with ALS, so you are wise to plan accordingly. At this time, I can walk/shuffle about 25 feet with my walker, but I spend about 95% of the time in my Permobil power wheelchair. I have good arm strength, so I can pull and push off well with them.

      We designed our roll-in shower (9+ feet x 4.5 feet) with a bench/seat along the wall of the shower end, a bench/seat at the drying end, no door, a commercial hand shower wand, a regular shower head, a remote on/off valve at the door, and seven grab bars around the shower.

      The commode area is a nook beside the shower (8 feet x 5 feet) in front of a sink/vanity. The raised toilet with a bidet seat is offset to the right with grab bars. The closet wall corner, which is the other wall of the nook, is trimmed off by one foot at a 45-degree angle to allow more space for a PWC to turn – this is very important. I use this toilet most of the time and have plenty of room to maneuver the PWC.

      The type of wheelchair you have will also determine how independent you can be in this area with toileting. My wheelchair elevates 14 inches, reclines, raise/tilts forward like a lift chair, and goes into a standing position with me on the footpads. Medicare only covers the standard model PWC that doesn’t have anything but the power feature to go forward or back. If I didn’t have the other features, I would need assistance standing up and sitting down every time in the bathroom.

      I drive my PWC in front of the toilet, angled slightly towards the grab bars, and insert a six-inch carriage bolt in a hole in the left arm of my pwc. I use my feet or short grabber to flip up my foot pads, then use the raise/tilt forward function; this raises me with my feet on the floor, so I slide out of the chair. I then use my right hand to grab the grab bar to stand up completely. Next, I shuffle/turn, grabbing the grab bar with my left hand and the bolt in the PWC arm with my right hand, and safely lower myself onto the seat. The PWC weighs 430 pounds, so it has never moved. This method allows me to be independent in the bathroom and stand up independently to my walker to transfer to my lift chair and at physical therapy appointments.

      I currently enter the bathroom in the morning with my walker to get cleaned up. I have weak core muscles, so I am bent over my walker and lean up against and grab the sink to brush teeth, get undressed, etc. I then use the walker to go to the shower, use all of the grab bars to move around, to sit, and then move to the drying bench to towel off. We have a shower chair to use when I am no longer mobile.

      We have a half bath off the kitchen with a pedestal sink. I plan on using this sink to brush my teeth and wash up when I can no longer use a walker. My feet fit under it when I am in my PWC. The sinks in the master bath both have vanities, so there is no place for my legs.

      We have looked at several ceiling lifts even tried one out in a showroom. They are very nice, very stable, and easy to use. It wouldn’t help to transfer me from my lift chair to the PWC in the living room though. I do not feel safe in a Hoyer lift. As Lori said was available, another option I have used in the showroom is the motorized chair lift. I currently have the arm strength to grab the bar and let it pull me up and move me anywhere in the house, to the PWC, toilet, lift chair, or bed. The one I tried has a harness and leg braces available if needed as I am sure I will. At this time we have not decided which lift we will get.

      This is what has worked for me, but as you know every Pals has different strengths, weaknesses, and progression.  It is food for thought, and you have to make decisions based your needs and financial situation.  My only recommendation is that you get a PWC before you actually need one and get as many features as you can.  I have even used mine to sleep in for four days while in respite care in a nursing home because their bed was terrible – it is very comfortable. If I had to stay in a hotel I would sleep in it there also. Getting it early allows you to learn how to use all the features before you need them.

      If you would like pictures of anything, I think I can attach them to this post, if not I can email them to you. Good luck on your remodel!  Sorry this such a long post.

      Len

       

      • #21540
        Kris
        Participant

        Thank you, Len! Your post is definitely not too long. I have a PWC that goes up and down but, because I am only 5 ft tall, it doesn’t go down as far as I’d like to make it easy to get in and out.

    • #21528
      Nina
      Participant

      Len, this is such a useful post. So much great information. I have a couple of questions that I hope you can take time to answer. One is – what is a motorized chair lift? I have no strength in my legs and wondered if I could use such a thing.I think I know what it is and it would not be usable for me.

      The second question is about your PWC. I am interested in whether I would be able to stand and sleep in a chair. Do you think you could post pictures of both of these? I realize you don’t have the chair lift but maybe you could post the link to what you looked at in the show room. It would also be great if you could post a picture of you in standing position in the power chair.

      I have some arm strength but absolutely no strength in my legs and it’s making all these aids pretty unusable. But there’s always hope that I will find a solution!

      I would really love to find some respite but most of the nursing homes I’ve talked to want me to stay for a month or so.

      Like I said, I really appreciate your post. I can see that I am behind on my research and you have inspired me! Hope you continue to find tools to stay self-sufficient. Best, Nina

       

    • #21547
      Len Jax
      Participant

      Hi Nina,

      I am glad the post helped; it is so hard to know what products are out there and which will help your situation. I was lucky to find Handicare in St. Louis; they manufacture slings here and have a showroom where you can try out all of their products.  They don’t sell from this showroom but will refer you to the nearest dealers. I believe they are national.

      This is a link to their minilift 160 sit-to-stand units that I tried.  If you can still stand upright, you should be able to use one; they have various types of sling/vest/wraps, knee braces, and ankle wraps that would hold you secure.  They are very stable, compact, and can maneuver in tight spaces.  I weigh 260 pounds, and my wife rolled me around with ease. There are many videos to show how they work. One of their models is a manual sit-to-stand, but my wife had more difficulty operating that.

      https://www.handicareusa.com/product/institutional-minilift-sit-to-stand/

      We were originally looking for a floor lift. Below is a link to a Handicare Minilift Eva 160EE floor lift.  Again, these are very stable, easy to move, and excellent slings. They have many different slings for different purposes, and you purchase those separately.

      https://www.handicareusa.com/product/eva-floor-lifts/

      All of their products seemed to be well made. They have many other products like slide boards and slide sheets that help caregivers move and rotate Pals. Their ReTurn mover even works well; it looks like a two-wheel dolly but requires you to have good arm strength.

      The sit-to-stand minilifts would be great if you have some strength, but they can not lift and place you in a bed. However, the wrap/sling would be less of a job to put on than the cradle sling of the lift.

      Yes, respite care is hard to find; keep looking as some of them do it. I have trouble attaching pictures of me standing and lying down in my wheelchair. I have asked for support from the site; if I can’t do it, I will send you a private message for your regular email address.

      Len

    • #21696
      Mindy
      Participant

      thanks lisa. My Dads place will need a remodel or possibly sell it and move to a single story or assisted living place. So many memories in that house.

       

    • #21702
      Eric Kentor
      Participant

      This is such a great conversation.  We recently completed an extensive remodel to our house, which focused on widening doorways, making bathrooms accessible (including roll in showers, grab bars, pocket doors to preserve space, roll under sinks, etc.), etc, etc.  For one of the smaller bathrooms, we installed a wall hung toilet and a wall hung sink with the plumbing inside the walls to create more space for me to turn around in my PWC.

      I still have use of my hands, and one of my favorite new items is an ADA door actuator that allows me to go in and out of our house (I go through our garage), and take myself out for a “roll” in the neighborhood on my own.  It’s been really liberating for me.

      Thanks to all the contributors to this conversation, and good luck to all of us.

       

      • This reply was modified 4 months, 2 weeks ago by Eric Kentor.
    • #21890
      Susana Rave
      Participant

      Hello all,

      Thank you for your posts on the home remodels.  I have a question to anyone living in the Los Angeles area as to what company you used, specifically for the bathroom remodels.  My husband and I live in a two story home so aside from the bathroom remodel to the bathroom on the first floor we are also looking at installing a chair lift.  Any recommendations are greatly appreciated.

      Thank you.

      Susana Rave

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