Road Tripping With ALS

Living with and bringing awareness to ALS.

https://maps.roadtrippers.com/trips/38752617?utm_source=copy&utm_campaign=trip_guide&utm_medium=ios

Great Article on Accessible RVing

https://wheelchairtravel.org/resources/wheelchair-accessible-rv-motorhomes/

Mile 9

Hacks, tips and tricks to living with ALS. At the suggestion of one of the “Juan-a-be’s” (subscriber), I am adding this post for tips & hack’s. You can add your own by leaving a comment. I will start by sharing a few Meg and have learned.

• Attaching a kitchen sink spray wand to the toilet water line helps with cleaning bedpans and urinals.
• For condom catheter users the urine collection bag can be cleaned with vinegar and water to be reused.
• Powerchair footplates can be covered with large carwash mitts; comfy and prevents damage to walls.
• Amazon has zipper compression socks.
• Round cotton makeup pads split, fit perfectly around the PEG.
• Skin barrier cream can prevent skin breakdown due to accidents.
• Round shower brush with finger holds to wash hair.
• Cloth covers for powerchair armrests; they get very hot in the sun.

These are just a few things we have learned through trial and error, but also from others. I welcome you to share your hack’s by adding it as a comment.

J Reyes

alstexasdad

8 responses to “Mile 9”

  1. Tim Martin Avatar
    Tim Martin

    Great job Juan. Anxious to see tricks and tips that make daily life just a little easier for pALS and cALS.

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  2. Grace Colette Avatar
    Grace Colette

    As a CALS to my husband, who was diagnosed March 30, 2022, I try to learn something about how to care for him every day. Right now, he’s mobile and not in need of much from me, physically. Mentally and psychologically, I’ve become his rock. So I try to stay strong in those ways now. I’ll need the physical strength all too soon, so I’m trying to exercise, especially my upper body, so That I’m able to help him when he needs it, without hurting myself. These kinds of “hints” and “tips” are helping me prepare for the future, so that we can be more proactive than reactive. Thank you for adding this.

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    1. alstexasdad Avatar
      alstexasdad

      Thank you for the advice for self-care, of the utmost importance.

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  3. alstexasdad Avatar
    alstexasdad

    Great resource for tips!

    https://heralsstory.org/hacks

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  4. alstexasdad Avatar
    alstexasdad

    Great resource for tips!

    https://heralsstory.org/hacks

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    Reply
  5. Sheila Avatar
    Sheila

    My best tip is to support the arms while in bed with long, round patio pillows. I found a pair at Burlington Coat factory for $10 each, I recently went to the five and below and bought a plush blanket and padded the tops of the arm pillows and then put them in pillowcases and safety-pinned them until I get a minute to sew them lol. We used to use twin pillows but they made him too hot as they’re too big and bulky.

    When he sleeps in his PWC, I put 2 twin pillows under his legs and use his heel protector boots that are strapped together and then I use my waist trimmer belt (no wonder I’m fatter now lol) to wrap his legs together so they won’t fall off the chair if he should reposition, this helps his feet not swell and keeps his legs warm and elevated.

    I always pad the arm troughs, because they’re hot and can cause friction burns.

    Trach care tip, I partially open the Ballard package and use it as my garbage 🗑 collection while doing trach care. Sometimes I prepare the whole set up in advance and store it inside that package and save time (there’s really no way to save time, so it’s just one thing done just before I do his trach care ) I only do this when I am about to do trach care because it needs to stay sterile as possible ideally.

    I have a black fabric bag I use to hide the urine drainage bag while out in public.

    I use strong rubber tie down straps to strap his ventilator to the PWC, this helps save space as you try to back up into tight spaces or while loading into the van. I bought them from the automotive section of Walmart for $3 or $4 a strap. I also use one on the suction machine and hang it on the side arm of his chair so I don’t have to carry it. I attached a small diaper bag over the ventilator so I can put things inside like my water bottle, keys, phone 📱and wallets etc. I used to put a small pillow or 2, in his lap so he could rest his hands there to relieve pressure areas – now he has a trap which is wonderful so he won’t get hot from the pillows anymore.

    We use a disposable underlayment pad to shave or brush his teeth to protect all the clothes or bedding. I use rubber soled shoes to hold his legs up for bathing and toileting in bed or just even to change his clothes.

    I have a great anti-fatigue mat at the bedside for my comfort while doing his bedside care.

    If I think of more I’ll add them.

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    1. alstexasdad Avatar
      alstexasdad

      All fantastic recommendations, thank you!

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  6. alstexasdad Avatar
    alstexasdad

    New tip for caregivers from Meg.

    Caregivers don’t need visitors, they need helpers. They shouldn’t be expected to host.

    Place chores and tasks in a jar and when company comes have them pull one or two out to do them.

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