Tagged: Adults With SMA, columns, Embracing My Inner Alien, Living with SMA, positioning, sweet spot
- This topic has 6 replies, 4 voices, and was last updated 3 years, 9 months ago by
Kevin Schaefer.
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June 12, 2019 at 7:00 am #19339
Hey everyone! Hope you’re all having a great week.
Check out my latest column here. I had to get bloodwork done a few weeks ago, in preparation for my eighth Spinraza injection. Finding a vein to draw blood from is tough for a lot of us. Fortunately though, this particular appointment went great.
This situation made me think about the idea of “finding the sweet spot.” I wrote about how this concept applies to positioning in my wheelchair and bed, working at my computer, and other things. I hope you enjoy.
Can you relate to this notion? Do you have any other examples?
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June 12, 2019 at 7:12 am #19348
Wow! I can certainly relate!
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June 12, 2019 at 11:35 am #19353
Thanks for the feedback! Yeah it’s crazy how many scenarios this idea applies to.
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June 12, 2019 at 10:06 am #19351
Nicely wrote column Kevin, lots of humor, but ”Lexington, Kentucky” line was the best one for me:D Is Lexington, Kentucky really notorious for accessibility, or is it like generally one should not expect many accessible sites in Kentucky state? Whatever the reason is, I like how the whole sentence sounds.
So as I said I like the humor, but it is really kind of text that shows how much trouble people with SMA have to go through every single day.
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June 12, 2019 at 11:42 am #19354
Thank you!
And yeah my parents and I were in Lexington in May, which I wrote about. Oy. it was a hassle.
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June 12, 2019 at 4:33 pm #19365
I can certainly relate. A few years back during a hospital stay I questioned if I’d ever be comfortable again. It’s also why I’m hesitant to get a new chair. Luckily most people understand that I’m seated for an extended amount of time so it’s important to be comfortable. I try not to be too picky though.
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June 18, 2019 at 12:56 pm #19437
I hear ya. I try to hold on to the same chair for as long as possible. Getting comfortable in a new one can be tricky!
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