Everything in our lives is difficult, from the things we need to do to survive to the things that we love to do.
That doesn’t mean we live a bad life.
I’ve been reading some columns on SMA News Today recently for inspiration and to connect with other people with SMA. I discovered this column by Kevin Schaefer.
Kevin writes a hilarious column, titled “Embracing My Inner Alien.” I was thrilled to find a fellow book nerd. I love reading; I’ve finished 36 books so far this year, close to my goal of 40. I even have a book blog.
But as Kevin’s column suggests, this activity that we enjoy so much can be really difficult. And sometimes it’s near impossible.
I didn’t have an issue with reading until my multiple sclerosis episode. I usually flipped pages with relative ease. But after that health experience, I couldn’t do anything besides watch a lot of movies. Some of my abilities have returned, but books are still a challenge. Now that it’s not so easy, I realize that I had taken this hobby for granted.
I hadn’t considered what I would do when I couldn’t read comfortably anymore. I should have thought about it because my SMA would have eventually prevented me from doing so.
Like Kevin, I have an issue with keeping the pages down. For over a year now I’ve been using a chip bag clip, of all things, to hold my pages in place, and then flipping the ones I haven’t read yet. After every 20 to 50 pages, I re-clip the book and continue to read. Page size, paper thickness, and binding affect my ability to hold the book in place.
Unlike Kevin, I rarely read books digitally. I’m stubborn.
After a quick bit of research, I found some various forms of adaptive equipment. While many of these won’t help me (though I am eyeing that wooden bookstand), they might be useful to someone else.
So, I have a couple of questions for you: What is your favorite hobby? And what tools or adaptations do you use to make your hobby easier for you?
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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