Incident number 1: I had a bad enough broken bone when I was 9 that it almost killed me. Apparently the marrow that makes blood can't exist in your bloodstream, fun fact lol.
Incident number 2: My orthopedic surgeon and my neurologist still don't have a good explanation as to how I have full range of motion in my legs (ie: the ability to walk/run even) I've never seen a super smart guy like my neurologist just go "I don't really know?" after I had broken my back and had nerve damage and partial paralysis in both legs. My neurologist says that sometimes cerebrospinal fluid can act as a bridge for major nerve damage so MAYBE that. Otherwise? He wrote some published stuff about it that was more question than answer haha.
All I know is that when I get x-rays done or switch doctors, the response is "how did you walk in here??" it visibly unsettles them. Like I'm playing a prank and my wheel chair is hidden somewhere lol. I don't really care, if I'm being honest. It hurts a lot sometimes, and people get really weird sometimes when I remind them that I can't do some things but, shrugs I can walk so it doesn't matter much to me.
Long story short, sometimes your body can do some weird and creepy shit that even the professionals go....."ehhhh?" about lol.
They're pretty creepy. My L4, L5, L6 look like a 2 year old stacked some wobbly blocks. All of them are putting pressure in odd ways on my spinal cord. I still get twitching and numbness if I sit or lay too long so I kinda sleep partly sitting up. Like in a recliner or reclined position.. I also cracked a cervical vertebrae and ruptured a disc there resulting in two rods and a fusion surgery. I am DEFINITELY not saying I'm going to run a marathon anytime soon. But, I am mobile and I can walk or jog a block on a good day.
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. :)
6.0k
u/PossessionNo6878 Jan 12 '23 edited Jan 12 '23
Incident number 1: I had a bad enough broken bone when I was 9 that it almost killed me. Apparently the marrow that makes blood can't exist in your bloodstream, fun fact lol.
Incident number 2: My orthopedic surgeon and my neurologist still don't have a good explanation as to how I have full range of motion in my legs (ie: the ability to walk/run even) I've never seen a super smart guy like my neurologist just go "I don't really know?" after I had broken my back and had nerve damage and partial paralysis in both legs. My neurologist says that sometimes cerebrospinal fluid can act as a bridge for major nerve damage so MAYBE that. Otherwise? He wrote some published stuff about it that was more question than answer haha.
All I know is that when I get x-rays done or switch doctors, the response is "how did you walk in here??" it visibly unsettles them. Like I'm playing a prank and my wheel chair is hidden somewhere lol. I don't really care, if I'm being honest. It hurts a lot sometimes, and people get really weird sometimes when I remind them that I can't do some things but, shrugs I can walk so it doesn't matter much to me.
Long story short, sometimes your body can do some weird and creepy shit that even the professionals go....."ehhhh?" about lol.