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What useful tools or gifts have you found to be most helpful for someone who has ALS?
In Kristin Neva’s recent column, she wrote about 5 gifts that were useful for her husband who has ALS. She mentioned: oversized, long t-shirts; small, light blankets; a massage gun; remote dog treat dispensers; and, chocolates with memories.
You can read her full column here: https://alsnewstoday.com/columns/5-gift-ideas-someone-als/
What useful tools or gifts have you found to be most helpful for someone who is living with ALS?
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6 Replies
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Great article! My husband also appreciated big soft T-shirts and small light blankets. And ice cream!
Later, after Hal completely lost his ability to speak, swallow, and move, he would often lay awake at night, bored but unable to do anything. Nights went on forever, as he lay motionless in his hospital bed, while I slept in my twin bed beside him. Two gifts he really appreciated then: a decorative moving xmas light display that projected onto the ceiling, and a lava lamp that we set up high, where he could watch it change from his position in bed. Helped those long nights pass.
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One of the best gifts my daughter has received is a ‘Skylight” wifi connected photo frame. When connected to wifi friends and family can send photos and videos via a unique email address. The photos are directly added to the skylight photo frame and to the ongoing slide show. Photos can be dowloaded in a batch or one by one if you snap a great shot on your phone! People from near and far have sent old and new photos, nature shots, etc. It brings daily joy and is easy for people to use. I think there may be other simiilar products but the ‘skylight’ brand is what we have.
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Such good suggestions!
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I think it depends on the stage and how much the PALS has progressed.
When I was first diagnosed, I appreciated going out to dinners with friends and friends coming over to spend time with me. I really didn’t get gifts from people but I would have loved certificates for massage, manicures, and pedicures and rides to doctors. I would have loved people to find out what I eat at home and surprise me with a dinner.
I think PALS in later stages want their CALS to be treated to things that help them cope. I don’t have a CALS but, if I did, I’d want him/her to have some time away from me and my needs.
Now, I’d love someone to gift me with a monthly cleaning service and do grocery shopping for me. I’d like someone to automate my condo, install an automatic door opener, and help the huge expense for caregivers.
I’ve met many PALS/CALS and just keeping up with progression can be a full-time job. Those without financial resources need advocates to do a better job.
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These are all such good suggestions. I hope our members can find a way to pass these helpful hints along to friends and family.
I wrote about this topic a few years ago… perhaps you’ll glean some more ideas from my post:
How to Help Your Friends When They Ask How to Help You
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For me, with bulbar-onset ALS, I quickly lost my ability to speak. (I’m sure that may have pleased some!) But, no worries, I got a couple of Boogie Boards (<$20, each), online from Amazon. USe them many times each day. Sort of like an Etch-a-Sketch board, but really useful for writing!
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Before ALS I was hot natured, and kept the thermostat set at a chilled 68 degrees. Today I’m ALWAYS cold. I’ve been gifted several snuggies, which are essential for my everyday comfort.
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