gimpygay
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Post by gimpygay on Dec 1, 2018 7:40:55 GMT -5
I am a full-time wheeler with Spina Bifida. Does that mean I am officially a paraplegic? Or is that term only used for people who have suffered a SCI? Excuse me if this is a silly question but I haven't had any dealings with an orthopaedic hospital since I was 16 which wasn't yesterday!
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gimpygay
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Post by gimpygay on Dec 1, 2018 10:18:16 GMT -5
Thanks Tykes.I am inclined to agree with you.
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Post by lucretia on Dec 1, 2018 11:23:33 GMT -5
My ex has sb and he refers to himself as a para most of the time.
The difference in function between a spinal cord injury and a spinal cord defect causing injury is pretty much semantics, imho.
However, in sb there are often additional conditions to contend with including cs fluid fluctuations that sometimes require a shunt from the brain.
As with CP there is a greater incidence of cognitive involvement, even if intelligence is not affected. Executive functioning can be diminished, leading to less impulse control and more emotional outbursts.
And since sb is congenital there is a greater occurrence of kidney problems in later years. Of course SCI also increases that risk depending on how incontinence is managed and how early the injury.
If you were to discuss your ability to navigate the world then describing yourself as a para seems legit. If you are describing yourself here or elsewhere in an introductory/"about me" setting then, again imho, sb would be more illuminating.
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Post by Deleted on Dec 7, 2018 13:15:26 GMT -5
If i see/read of a person described as a para or quad i automatically think of a spinal cord injury. Whereas "wheelchair user" i tend to assume covers most other things. Obviously ive been a bit simplistic in my thinking, thanks lucretia for the info.
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Post by robbb on Dec 7, 2018 13:39:23 GMT -5
What @delight said.
R.
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Post by TotalBias on Dec 7, 2018 13:45:17 GMT -5
It depends on how much info you want to give and also how much the other person knows about disability (specifically spina bifida). When I was dating a guy with SMA I ran into this issue a lot where people would ask me about dating a paralyzed guy.... the only place he was paralyzed in was one hand, btw. I used to explain to everyone that asked that the very nitty gritty specifics of SMA and how it was not the same thing as being paralyzed even though mobility was practically nonexistent. However, as time went on, we found that for all means and purposes most people just needed to know he was he was nearly quadrapeligic because of a genetic condition. No he couldn’t walk. Yes he could feel everything. Yes his dick worked. No he couldn’t go to the bathroom on his own. Honestly, those were the only things most people wanted to know. Tell people whatever you want to tell them. It’s your body.
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willie0001
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Post by willie0001 on Dec 8, 2018 13:07:38 GMT -5
What's that make me? SCI, broke t-7, 8 and 9 left paralyzed at t-10. Years later they found a fluid bubble in my spinal column (syrinx). The syrinx is squeezing my spinal cord causing lose of feeling in right arm and some motor skills. So does that make me a triplegic?
I'd still call a SB person a para or quad depending on how many limbs are affected.
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Post by The legs don't work on Dec 8, 2018 13:34:59 GMT -5
I have spina bifida and I've always considered myself to be paraplegic. All it means is that two limbs are paralysed and I have no feeling at all in either leg below the knees. It doesn't have to be something that has been acquired through injury.
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gimpygay
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Post by gimpygay on Dec 9, 2018 10:43:51 GMT -5
Thank you for all your intelligent and interesting comments on my post. PD is a great Community.
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