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Accessible hobbies for ALS?
Once my ALS symptoms set in and made my hands and fingers feel and move stiffly, I found I could no longer pursue my hobby of “trying out all things in the fiber arts.” Embroidery, painting on fabric, and even holding a hot glue gun steady became impossible. But I couldn’t give up being creative, so I adapted and now knit – very, very slowly.
That got me thinking: if I struggled to find new ways to enjoy my hobby, other ALS patients must be too. Maybe we could all share what we’re into and inspire each other to pursue new accessible passions?
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3 Replies
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I think that retaining hobbies, but finding new ways to do them is so important. Don’t give them up. Not only is doing something that gives us joy and satisfaction good for our attitude, it has benefit for the health of our brain as well. Here is the latest research:
https://www.youtube.com/watch?v=gOJL3gjc8ak -
I had to think about what ALS has interrupted – and obviously it’s mostly physical things. I had taken surf lessons and now I know why I had a hard time “popping” up on the board. Ha! I use to ride my bike for hours especially when I went on vacation in New Orleans or Key West. Ugh, I do miss those things but my life is still filled with many things I love.
My fine motor skills are not impacted badly most of the time. I have days that the cramping is so bad that using my hands for anything for long is out of the questions, but those are not often.
My mom started teaching me to quilt about 10 years ago – boy has time flown by! I’m still quilting although it isn’t as easy and definitely takes a lot more of my energy. The seams my not be as straight, and my Points may not be as “on point” as I would like, but I keep on going!
I’m still able to do a lot of the things I enjoy – I upcycle clothes, repurpose furniture, and try just about anything I can artistically. I want to try crushed glass art next!
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G is no longer able to speak or get around well, he’s mostly housebound. This is really hard for him because we have a large property with a lot of interesting things going on, all the time.
We have trail cameras set up and I switch-out the disks when I have a chance. He LOVES sorting through the images – sometimes just wind whipping a branch around, other times a moose or bear or bobcat, very fun. Recently he got a short video of an otter sliding on the snow down the driveway, hilarious! We have a lot of deer and coyotes and raccoons, too.
He has also always loved to travel and that’s no longer logistically worth the effort. Spoiler alert: his “big” Christmas gift this year is virtual reality goggles. Now he’ll be able to travel wherever he wants, on his terms, all from the comfort of his bed while using the bi-pap ventilator.
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