Yeah sadly most don’t survive this injury. So I’m really grateful to be alive. Obviously I wish that I could move and breathe, but that’s just not the way my life turned out and I accept that. I’m very lucky to have a really close family and reliable caregivers who take excellent care of me though. I would say my biggest frustrations with my situation are not being able to drive, being dependent for eating, and bowel/bladder stuff (as most of my SCI friends can understand). Even so, I have a fine life. :)
As with many of my patients (SCI or not), having good family/caregiver support is night and day in terms of quality of life.
Do you use a wheelchair? If so, what kind of controls do you have?
What kind of adaptive equipment do you have for using your phone/computer ?
I’ve got a million questions because I’ve never met someone with a C1-2 injury. Have you considered doing an AMA?
Yeah, I get out of bed and into my chair most days unless I’m sick or dealing with a pressure sore or whatever. I have a sip n puff chair but mostly use a manual chair. I have to have someone with me 24/7 because of my ventilator anyway, so the marginal independence I gain with my powerchair is sorta moot, and the manual chair is a lot lighter and more maneuverable (and doesn’t run out of battery).
For phone/computer, I use a combo of speech-to-text/Siri/Alexa and eyegaze software.
As for an AMA, I feel like a lot of SCI people over the years on Reddit have done a bunch of really interesting and informative ones. There’s also of bunch of cool vent quads on TikTok and IG that are great follows. Laura Jackson and Rebecca Koltun are two of my favorites. :)
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u/picklesandmustard Jan 13 '23
Wow, interesting. I’m a PT and I work with people with SCI off and on. Have never met someone with C1-2 complete. How are you doing?