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Hi everyone - I saw a thread on being short, and I figured - well, I'm pretty darn short, too, given my rather permanent sitting position. I think I top out around 4'8" or so, in my titanium throne. I realize that paralysis in general is sort of a mystery topic in general - the reactions I get in public tend to be either stares, or people trying hard to not look at me. It's also a rather permanent fixture in my life - I go nowhere without a set of wheels under me, and as such it inevitably conspires to form a relatively core part of my identity as a person. It's not something you think about before it happens to you, and your life is completely upended and turned upside down. About me in particular - I have a spinal cord injury due to a rather uncommon autoimmune condition called Transverse Myelitis. There's a lot of gritty details I can expound on later, but the short version is that essentially the immune system suddenly goes rogue, and decides that a specific spot on the spinal cord is a threat and needs to be attacked. It causes major inflammation in the spinal cord itself, at the site in question, essentially causing destruction of the nerve pathways and cell death. Same thing, more or less, that happens when pressure inside the skull increases due to a traumatic head injury. Too much pressure, and the brain is killed or irreparably damaged. In my case, my cord is about 92% dead (just an estimate on my part) - I still have some 'feeling' below the injury level, although I hesitate to call it "feeling" in the traditional sense, because it is far from that. I love getting questions from kids - they always ask me if I can walk. The answer, of course, is no. Kids want to know if I can walk. Adults want to know if I can frak. No and Yes. Finding housing was a nightmare, something with an accessible bathroom - that's the hardest part. A bathroom big enough to maneuver the wheelchair, get to the toilet, close the door, and also, transfer into the shower. Driving though - I have no problem with that. My car is fully adapted with a hand control setup, and I can blast down the freeway like anyone else. Anyway, if you don't have a car in Los Angeles, you're pretty much nothing. Anyway, I've blabbered on enough - you have questions? I'm an open book. Anything and everything about the neurology, science, life... I'm well versed in it all. 
Daily Drivers: 2002 Mercedes E55 AMG, Brilliant Silver, Autoadapt Menox control, hard-wired Valentine 1, SeeZeus GT680W dashcam w/ GPS | Ki Tsunami Titanium w/ Spinergy SPOX, Jay J2 Seatback, Jay J2 cushion
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Oct 19, 2014 13:48
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How independent are you and what kind of scholarships are available, if any?
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Oct 19, 2014 13:59
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I'm 100% independent. I have no real restrictions - I am fully able to take care of myself. Lots of people with a spinal cord injury aren't - it all depends on what level in the spine the injury is at. My injury is at T7... Here's a pic - show you which vertebra correspond to levels of injury and function - showing what controls which...  As far as scholarships go, I have absolutely no idea. I know there are organizations out there that will give scholarships for disabled people, but I don't know which.I'm not a student - I'm 30 years old, and a computer software professional. Technically speaking, I could apply for disability from Social Security if I ever get laid off, but I'd much rather be working and earning a living than living on the taxpayer dole...
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Oct 19, 2014 14:55
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how does pooping work
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Oct 19, 2014 19:20
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Iseeyouseemeseeyou posted:how does pooping work Aww, poo poo. I knew this question would come up.  Well, basically the intestine doesn't move stuff through as normal - obviously I have no sense or sensation down there - so, what a lot of people do is called "digital stimulation"... basically, pop on a glove, lube your finger, and stick it up inside. Wiggle around. This usually causes the stuff to start moving... that process can take 30 minutes to an hour. Stick finger in, wiggle around, wait a few minutes, repeat. Another method is bisacodyl suppositories. Bisacodyl is a stimulant laxative suppository that triggers the movement of the intestine. Stick suppository in, sit on toilet reading iPad, about 20 minutes later stuff starts coming out. If it doesn't, then finger goes inside, wiggle around, and that usually starts the process. Me, I find those two methods utterly and completely unacceptable, and they offend my sensibilities. I use a commercial product specifically designed for clearing out poop - it's basically a bowel irrigation pump. Anyone /really/ interested can go Google the Coloplast Peristeen system. I fill a pump with lukewarm/body temperature water, stick a tube up into my area - and the tip of the device inflates a balloon of air, creating a seal around it - so it won't dislodge or come out. Then, I proceed to pump water inside. I pump it in, wait about 5 minutes or so for everything to percolate, and then I release the balloon - the tube comes out, and so does everything else. It's relatively clean, painless, and fast. But not cheap... I'd be lying if I said accidents were impossible, but they're extremely uncommon. I've had one incident in the past year. Some people have wayyyy more problems than I do, I consider myself lucky.
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Oct 19, 2014 19:38
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How old were you when this happened? Do you live alone? If so, do you have family and friends who are available to help, if you ever need anything? What about romantic relationships? I apologize in advance if that is too personal, but I'm always curious. (For some context, my wife has cerebral palsy and teaches a college class on Critical Disability Studies, and she has written a lot on relationships where one partner has a disability and the other is (temporarily) able-bodied. She is quite independent, but she uses a walker and doesn't drive.)
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Oct 19, 2014 19:58
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Big Bad Voodoo Lou posted:How old were you when this happened? I was 28. Its been a little over 2 1/2 years. I am fully adjusted, and pretty comfortable in my skin. I don't have any particular desire to press the "undo" button, even if it were possible, because I am able to do anything and everything I want to do short of driving a stick shift. The bathroom stuff is perhaps the biggest inconvenience, but aside from that, I don't really view it as a "disability". Yes, there are obviously a great number of things I am unable to do that a normal person can, but there are always ways to accomplish what I want to do. Re: living situation, I share a house with 2 other people. I did live alone for a year - after the initial recovery and such, I was able to retain my apartment - had a barely workable bathroom, but the rest of it worked perfectly. I do have friends and can always call my mom, but I really don't need that much help with things. Moving furniture around, lifting big heavy items, and such... aside from that, I can handle most anything on a day to day basis. Now: romantic relationships - I haven't been with anyone since it happened, though I want to be, and I've been trying. Had a few dates, and one guy I went on more than one date with, but I decided not to pursue it. I don't consider myself supermodel material, in fact, I don't think I'm that attractive overall. All I have going for me is my brain. Finding a husband is exceedingly difficult. I am absolutely 100% unwilling to consider ANY relationship with another physically disabled person - the one I get involved with has to be functional. Now: there's a group of folks out there who are called "devotees" - these are guys (and girls) who are sexually attracted to spinal cord injuries or amputees, and for many of them, they try to create relationships with them. They're generally hated and shunned by the disability community, and a lot of them are downright creepy and dangerous. I have a friend who had to take out a restraining order on a guy who had stalked her through the internet, and had pieced together what neighborhood she lived in. He flew out to her city, walked the streets, and looked for apartment directory listings - and found her, professing his love for her 'dead legs'... The police were called, and an emergency restraining order granted within a few hours. That said, there are also some exceptional gentlemen in the bunch - they're harder to find, but, I would consider one of those people to be potential husband material. It's just a matter of finding that person, and cultivating a relationship with them. A genuine relationship - something where the person sees me, and not just the wheelchair. That's the difference between the creeps and the gentlemen. The creeps only care for disabled people as a sex toy, an object to get their jollies. The gentlemen just have a healthy fetish, and see the person underneath the exterior...
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Oct 19, 2014 21:54
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Where is your injury on the chart you provided? E: I understand it might be more generalized because it's an autoimmune response, but you specified that it's going after one particular spot, so  Also, do you use a motorized set of wheels, or hand-powered? RPZip fucked around with this message at 22:16 on Oct 19, 2014 |
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Oct 19, 2014 22:12
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RPZip posted:Where is your injury on the chart you provided? E: I understand it might be more generalized because it's an autoimmune response, but you specified that it's going after one particular spot, so Sorry if I wasn't totally clear... The level it went for was T7 - so, on the chart, you'll see T7 right around mid-torso. That's roughly where everything turns off. Transverse Myelitis doesn't go after a wide area - it's a very localized lesion on the spinal cord, and it can occur anywhere on the cord from the very top to the very bottom. It's not understood why it happens. My chair: It's a titanium ultralight rigid frame manual chair, however, I do have power-assist wheels which I rarely use - only if I'm going to be in a hilly area, which will require a huge amount of physical exertion (or even impossible) - there are some grades that I just can't scale. Here's a photo in normal use - without the power-assist, and with the power-assist... Regular day to day:  With power-assist:  An ultralight rigid frame chair is the chair of choice for an active user. People who are dependent on chairs, and who propel themselves with their arms generally do not go for folding frame chairs (adds significant weight, and the folding frame means less power is transferred to the ground - more power is absorbed by the frame). Also, much harder to load into and out of a car independently... ValleyGirl fucked around with this message at 22:46 on Oct 19, 2014 |
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Oct 19, 2014 22:43
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ValleyGirl posted:Sorry if I wasn't totally clear... The level it went for was T7 - so, on the chart, you'll see T7 right around mid-torso. That's roughly where everything turns off. Transverse Myelitis doesn't go after a wide area - it's a very localized lesion on the spinal cord, and it can occur anywhere on the cord from the very top to the very bottom. It's not understood why it happens. how much do you bench
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Oct 20, 2014 00:09
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Thank you for your insight. As a physician I have diagnosed and cared for many patients with transverse myelitis, and what is unusual about the disorder is that it can occur in isolation, or in association with a variety of disease processes. It seems yours is a bit atypical in that you did not recover - most, but not all patients improve. I am wondering - what investigations and treatments were undertaken? Typically we do tests like a spinal tap and brain/spine MRIs to see if this could be multiple sclerosis, neuromyelitis optica, infectious, autoimmune process, vitamin deficiency etc. My main concern with such cases is to make sure there is no treatable cause (HIV is one example) to prevent recurrence at a higher level.
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Oct 20, 2014 01:12
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Low Carb: Good questions. I did have some recovery - when I say that I don't really have 'sensation' below my injury level, that is true to a large extent - I do get tingles and pinprick sensations every so often. I also have an uncanny kinesthetic sense - I know where my legs are in space without having to look at them. Obviously some information is traveling up to the brain - I know and can sense if they're moved, even though I could hit my foot with a hammer and not feel anything (other than having the knowledge that its been hurt). I was told about 30% of cases don't recover, 30% or so have full recovery, and 30% are left with deficits - I never bothered to independently verify this. Treatments: Well, the ER staff picked their noses and scratched their heads for about 8 hours before they came up with "transverse myelitis". During this time, there was an MRI done of both my spine and brain, a spinal tap was done (left me with a headache for a week), and I was pumped full of morphine for the rather major pain I felt coming from my spine. After about 8 hours, they pumped me full of steroids to try to shut down the immune response, but by then the damage had been done. Afterwards, they wanted to do an "exploratory surgery", but they couldn't articulate to my satisfaction why it was necessary or would improve my circumstance, so nothing happened then. The day before this all happened, I was not feeling very well - kinda the way you feel right before you get the flu or a cold. Like, you have a sense something's coming. My guess is that a virus or something may have triggered it, but there was never any confirmation. Idiopathic was the word used... Iseeyouseemeeseeyou: Not really sure how much I can bench. I'd wager at least 100 pounds, but I'm not sure.
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Oct 20, 2014 03:44
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Given that you have no sensation below a certain point in your torso and you arent interested in similarly disabled partners how do you handle sex?
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Oct 20, 2014 04:38
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ValleyGirl posted:There's a group of folks out there who are called "devotees" - these are guys (and girls) who are sexually attracted to spinal cord injuries or amputees, and for many of them, they try to create relationships with them. They're generally hated and shunned by the disability community, and a lot of them are downright creepy and dangerous. I have a friend who had to take out a restraining order on a guy who had stalked her through the internet, and had pieced together what neighborhood she lived in. He flew out to her city, walked the streets, and looked for apartment directory listings - and found her, professing his love for her 'dead legs'... The police were called, and an emergency restraining order granted within a few hours. A question people ask me is "what's the one most frustrating thing to deal with as a dwarf" so I'll ask you that as someone in a wheelchair/with a spinal cord injury. What's the one thing that you most wish you could change about the world around you in terms of day to day life and doing things?
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Oct 20, 2014 04:46
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How are you not super pissed at the world for the raw hand you were dealt?
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Oct 20, 2014 05:09
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do you plan to become a bionicle
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Oct 20, 2014 05:22
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Weirdest/creepiest encounter with another person involving your disability? I had a friend in high school who was a paraplegic. One time, she was sitting outside our lovely mall, waiting for the door area to clear up so she could press the handicap auto-door. Some lady grabbed the back of her chair and decided to "help" her get inside. She said it really startled and upset her at the time, but now she's turned it into a pretty animated and funny story.
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Oct 20, 2014 06:18
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May I ask how you exercise? Do you just do upper-body stuff, or is there some way to burn carbs from your lower body? For some reason, I always imagine disable people gaining more and more weight, and it makes me feel lovely 
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Oct 20, 2014 07:24
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Lord Windy posted:Given that you have no sensation below a certain point in your torso and you arent interested in similarly disabled partners how do you handle sex? Well, I handle it the normal way. My parts are still there, y'know, and they're not any more delicate than anyone else's. I'll readily admit that I'm frozen below the waist, and not very animated, but I can derive enjoyment and orgasm still, despite the spinal cord issues. One issue is that I need to use lube - my body doesn't naturally respond to either mood or physical stimulation. See, one of the strange things about the way the body is neurologically wired - there are nerves that pass information along routes other than the spinal cord. One of these is the Vagus nerve. It can transmit 'orgasm' - definite sensation of some sort. The vagus nerve is not wired to transmit touch or feeling sensation, and does not do that - it's very hard to explain what the actual feeling is. It's not a regular orgasm - those are long gone. Clitoris? Dead. No vagus nerve connection there. G-spot on the other hand... it's almost as if a phantom pleasure from 'beyond' my body washes over me, waves and waves of it. The intensity is there, but it's not a strictly physical feeling. I wish I had a better way to explain it, but... it's a disembodied orb of pleasure floating off in the netherworld, blasting me with wave after wave of pleasure. I love it - to the point that I honestly don't miss the old way. My boobs also got a lot more sensitive... so they're fun to play with. I think sex is pretty much okay. That said, I still haven't had sex since the injury. All of my experiences come courtesy of my roommate, Mr. Vibrator. A scholarly article for y'all who are really interested: https://web.archive.org/web/20070205060914/http://psychology.rutgers.edu/~brk/brainresearch04.pdf ... "Brain activation during vaginocervical self-stimulation and orgasm in women with complete spinal cord injury: fMRI evidence of mediation by the Vagus nerves" CommissarMega posted:May I ask how you exercise? Do you just do upper-body stuff, or is there some way to burn carbs from your lower body? For some reason, I always imagine disable people gaining more and more weight, and it makes me feel lovely Well, I lost about 70 pounds after the injury. There's no way really to target the muscles down there unless you use a method like FES - functional electronic stimulation. The usual device is called an FES bicycle - I'd strap my legs to a set of pedals under some tension, and then apply a number of electrodes to each leg, which commands muscle contraction. The machines that do this are quite expensive. Youtube link showing a setup, with somebody explaining how they work: https://www.youtube.com/watch?v=5w6L5eE0YAM afterhours posted:Weirdest/creepiest encounter with another person involving your disability? Well, one thing sticks out in my mind in particular - I was going for lunch at a place I'm a regular at. It's a fantastic deli in a very old building (1920s?), and the entrance isn't really that accessible - there's a single step that I have to climb to get up into the place. So, I'm at the door, reaching to open it up. I man comes up behind me, "Do you need any help?" - a common question. "No thanks, I got it..." He replied by walking up behind me, "Okay, I'll just push you up...", and I go to respond, "I SAID..."... and he stops. "Hey! I can't push you! You don't have any handles!"... I flip the chair 180 degrees to stare the guy in the face. "There aren't any handles so people won't push me after I've said I don't need any help."... he walked away muttering about what a bitch I was... Another time - I was getting out of my car at the pharmacy, putting the chair together. Old guy, 70 years old or so, he walks by and asks if I need help. "No thanks, I have this down to a science" is my usual line when declining help for putting the chair together or taking it apart to get into the car. He stops, and continues to watch. He then declares, "Poor thing," and then walks away. I swear, nothing shot my blood pressure up so high so quickly as hearing that. Iseeyouseemeseeyou posted:do you plan to become a bionicle I had to look that up on Wikipedia. Short answer, no. Like being organic. n8r posted:How are you not super pissed at the world for the raw hand you were dealt? Few reasons: being pissed serves me no purpose at all. My circumstance cannot change. I have to work within the framework I've been given. The other reason - I honestly don't feel like I've lost much. Some people are devastated that they can't walk or run or whatever. Me, I was never very physical, I hated the outdoors, hiking, anything dealing with nature - I had no love for it. Now I can't do those things - go on a hike in the mountains, climb mountains, etc - and I never wanted to, or even gave it a moment's thought. I have an inconvenience, and that's all it is for me. And it isn't always an inconvenience. It's just life. And life is good. People tell me I'm supposedly "inspirational" because of my attitude. So, I'm inspirational because I do what I want to do? That's another one that sends my blood pressure skyrocketing. Tendai posted:I didn't know that this existed for spinal cord injuries, goddamn. I've had a lot of "Heh I love midgets you wanna gently caress" but I didn't know things got quite that specific. What happened to your friend is beyond creepy. The one thing: bladder and bowel control. That's the biggest pain and issue I deal with, and would rid myself of. Though, your question is in the context of the world at large: I suppose the thing I wish I could change is society's implicit assumption that I'm helpless, fragile, etc. No more of that, please...
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Oct 20, 2014 08:48
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I think it'd be kickin rad if you became a bionicle.
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Oct 20, 2014 09:04
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ValleyGirl posted:Well, I handle it the normal way. My parts are still there, y'know, and they're not any more delicate than anyone else's. I'll readily admit that I'm frozen below the waist, and not very animated, but I can derive enjoyment and orgasm still, despite the spinal cord issues. One issue is that I need to use lube - my body doesn't naturally respond to either mood or physical stimulation. I started off thinking you'd have lost out on sex forever. What you described sounds just as satisfying as normal sensations. I am worried about googling this but can men still have orgasms if they had a similar injury? Also thanks for doing this I would be far too embarrassed asking this to someone in person. EDIT: I am also a dick for assuming you can't feel anything. Lord Windy fucked around with this message at 13:14 on Oct 20, 2014 |
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Oct 20, 2014 09:15
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ValleyGirl posted:I was getting out of my car at the pharmacy, putting the chair together. What's that process like?
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Oct 20, 2014 12:35
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Oh God, the 'poor thing' sentiment. Loathe that. I occasionally have to walk with a stick and even more occasionally have to use a chair and that poo poo is almost as annoying as people talking to you as if you're stupid - if your legs don't work properly, obviously your brain doesn't, either! This is a really interesting thread, so thank you so much for posting it and being so open.
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Oct 20, 2014 12:36
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ValleyGirl posted:The one thing: bladder and bowel control. That's the biggest pain and issue I deal with, and would rid myself of. Though, your question is in the context of the world at large: I suppose the thing I wish I could change is society's implicit assumption that I'm helpless, fragile, etc. No more of that, please...
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Oct 20, 2014 16:05
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Mister Kingdom posted:What's that process like? I will try to shoot a video for everyone's edification today - might be a little clunky with the fact that I've got to hold the camera, but also need two hands for loading/unloading the chair... but I'll take care of it when I go out later. It's a simpler process than most people think - I think you'll be surprised. Lord Windy posted:I started off thinking you'd have lost out on sex forever. What you described sounds just as satisfying as normal sensations. Well, women get the better end of the deal with spinal cord issues. Men on the other hand, I have never seen or heard of any evidence for a male orgasm after a SCI. Penis uses the same wiring as the clitoris - which has no connection or route to the brain other than the spinal cord. Men do have something analogous to a g-spot - I believe the prostate. I really haven't investigated it, but I'm sure that with some experimentation they could probably end up feeling something... but from what I've heard, and from the people I've spoken to, it really doesn't work. If you're a guy, you're SOL. Not a dick at all! It's just that people really don't know much about this stuff - there's common misconceptions that are encapsulated in the public collective unconscious... that's sort of the point of this thread. I want to eliminate some of the mystery.
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Oct 20, 2014 18:37
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As promised, here's my video showing how to get the chair in and out of the car, also doing a transfer: https://www.youtube.com/watch?v=MVtnyRNShaE
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Oct 21, 2014 06:23
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Does anything change with your internal organs now that the spinal cord is damaged? It's awkward trying to phrase this question, but does anything change with the stomach/pancreas/liver/etc? You mentioned that the intestines don't work the same now so I was wondering if it extended to other parts of the body. If you got something like appendicitis would you know before a fever set in?
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Oct 21, 2014 10:40
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Do you keep track of medical advances in fields relevant to your injury? I've always been keenly interested in regenerative medicine and prosthetics and artificial vision etc, and it seems things are progressing in the field now, does that give you hope for the future or do you not try to think about it in case it doesn't pan out?
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Oct 21, 2014 12:56
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Lord Windy posted:Does anything change with your internal organs now that the spinal cord is damaged? It's awkward trying to phrase this question, but does anything change with the stomach/pancreas/liver/etc? You mentioned that the intestines don't work the same now so I was wondering if it extended to other parts of the body. If you got something like appendicitis would you know before a fever set in? The only major change is the whole motility of my digestive system. It doesn't move as quickly as it did before, and I do actually take a medication (http://en.wikipedia.org/wiki/Metoclopramide) on a daily basis to assist with this. I could go without it - just that things would be a little slower and less predictable. Everything else mostly functions normally - with the exception of the bladder, and potential knock-on effects to the kidneys if the bladder isn't managed properly. This is more of a problem for women - but bladder infections are a pretty common issue, both for injured and non-injured alike. This is due to the short urethral passage between bladder and actual exit from the body, occasionally some bacteria works its way in. Since I stick a catheter up there 4-6 times a day, even though it's sterile and new each time, the chances of infection go up dramatically. Left untreated, it can migrate to the kidneys. Also, urinary retention is an issue for some paras - usually lower level injuries below T12. In those cases, the bladder is 'flaccid', and will not empty on its own. This means if it gets full, it will back up into the kidneys. Higher than T12 usually have a bladder that'll spasm and empty itself whenever it gets to a point that it gets triggered. The trick to management is to figure out the trigger point, guesstimate how long it takes to reach it, and empty out right before you get there. Everything else pretty much runs on autopilot. That said, some higher level injuries (and the higher you go, the more likely this becomes) is the issue of Autonomic Dysreflexia.. http://en.wikipedia.org/wiki/Autonomic_dysreflexia Wikipedia Autonomic dysreflexia article posted:Acute AD is a reaction of the autonomic (involuntary) nervous system to overstimulation. It is characterized by paroxysmal hypertension (the sudden onset of severe high blood pressure) associated with throbbing headaches, profuse sweating, nasal stuffiness, flushing of the skin above the level of the lesion, slow heart rate, anxiety, and sometimes by cognitive impairment. His Divine Shadow posted:Do you keep track of medical advances in fields relevant to your injury? I really don't actively follow the research. Things ARE progressing in the field - in fact, I read an article yesterday about a British research team restoring mobility to a Polish guy whose cord had been completely cut. http://uk.reuters.com/article/2014/10/20/us-health-paralysed-idUKKCN0I92FE20141020 I don't hold onto hope at all. I am going to go to my grave as a paraplegic, and I'm perfectly content with that status quo. If they came up with a fix for my spinal cord, I would politely decline the offer. For me, it has been so long since my injury that I am fully adjusted to life this way. I have become comfortable in my skin, and while there are inconveniences regarding paraplegia, it's nothing insurmountable in my ability to lead a life I want to live, and do what I want to do. It has been so long that my brain has adjusted, perhaps even atrophied in the body map areas. I try to think about moving my legs, and I can't remember how to modulate my muscles, or even will them to move. Just after my injury, I could send specific commands - wiggle big toe, bend at knee, etc. I have lost all that. Memories of walking are vague, almost surreal. I barely remember what sensation and movement felt like. The way I see it with any realistic spinal cord fix: I'd have to have surgery, then spend years in intensive rehabilitation to gain back function. I just don't see the return on investment - at least for my particular case. I don't think it's worth the effort to upend my life, and engage in a myopic quest to walk again - I accepted I never would, and I am happy with my life and body. It is not an impediment to my happiness and satisfaction in life, and the effort involved to walk again just isn't worth it.
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Oct 21, 2014 18:40
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What was the recovery process like? Did you have physical or occupational therapy, counseling etc, and if so, do you still have to go to it?
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Oct 21, 2014 19:07
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E: didn't see this had been asked, sorry.
copy of a fucked around with this message at 20:45 on Oct 21, 2014 |
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Oct 21, 2014 20:41
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Very interesting thread, thanks for sharing. If you chose to, could you get pregnant and carry a baby? I would assume the birth would have to be C-section, but otherwise, all of your innards would probably stay on auto-pilot? What are your opinions on the world around you being ADA-compliant? In theory you should be able to access any public building, but I assume there are several places that missed the mark. Both for entry to the building as well as maneuvering around inside (clothing stores with tiny walkways between racks are what's sticking out in my mind).
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Oct 21, 2014 21:43
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ValleyGirl posted:Memories of walking are vague, almost surreal. I barely remember what sensation and movement felt like. So you never dream that you're ambulatory?
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Oct 21, 2014 21:59
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You mentioned cathing on a regular basis throughout the day - is a permanent(?) cath not an option? Or is this simply how you prefer it?
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Oct 21, 2014 22:11
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ValleyGirl posted:As promised, here's my video showing how to get the chair in and out of the car, also doing a transfer: Thanks, that was interesting. Have you ever had somebody park too close to the driver's door?
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Oct 22, 2014 00:04
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I do not have a spinal cord injury, but I grew up with a father who was completely paralyzed from the T4 (refer to the chart above, or if lazy, about the nipple line) down. His accident occurred about 3 months after I was born, and also had a mild TBI that affected his coordination among other things. While I can't tell you whats its like directly, I can answer a lot of questions about a different variety of spinal cord injury. While he was mostly independent for many years, he could never drive like you. Also, seconding the bathroom thing. Eventually we said "gently caress it" and completely removed the door and installed a smaller toilet to give more room for maneuvering. I saw that you lost weight after wards, mainly from muscle mass. Do you do anything to work out? One significant downside to my dad's paralysis is that he could not exercise as efficiently as before. Even though he had a manual wheelchair and was constantly moving, he ended up putting on a lot of weight and getting type 2 diabetes. Part of that was of course diet, but the inability to get solid cardio also seemed to affect it.
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Oct 22, 2014 02:25
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McStabby posted:What was the recovery process like? Did you have physical or occupational therapy, counseling etc, and if so, do you still have to go to it? It varies for a lot of people. For me, it was not that long of a process - there was some physical therapy, mostly focused on building upper body strength, and learning the skills to take care of myself - the bladder/bowel management is a huge component of that. Transfer skills were a big part of it - how do I get myself up from the floor? Some wheelchair skills - think of it as boot camp. There was also some work on my lower body, in the hopes that we'd see significant recovery - I used the rehab center's FES bike to try to hold off the inevitable atrophy that would occur. That was dropped after about a month without any real change - usually if you're going to recover function, it'll be within the first 3 months. If you have no recovery by a year, your chances are pretty much nil. Insurance plays a role in how much rehab you get - people with poor coverage would be out of rehab in a week and sent home. I had 2 weeks of inpatient, and another month of outpatient stuff, 2-4 hours a day. Mister Kingdom posted:Thanks, that was interesting. Have you ever had somebody park too close to the driver's door? Yes. Usually this isn't an issue because I try to park in the handicap spots, but all too often they're occupied and I either have to wait for the spot to open up, or go park in the back of the lot where I'm confident nobody will park next to me and then push myself across the parking lot, behind cars that could reverse out and are unlikely to see me... it's not the safest activity. And of course, most of those people with placards can walk for hours on end. Of course, the car I drive doesn't look like something somebody with a wheelchair would drive - it's a German muscle car that looks like an unassuming midsize sedan. People give me nasty looks when they see me pulling into the handicap spot... of course then I whip the chair out, and it's like, guilty looks, avert the eyes, disappear... The one time I was blocked, I was in a rush, and I was pissed. The car next to me was illegally parked in the space for loading/unloading the chair, and he'd parked so close I couldn't get the chair between. I ended up going into the car through the passenger door, hauling myself over the center console, and then I opened the driver's door as hard as I could, and smashed it into the side of the other car about 5 or 6 times. It left a mark. Also, here's a video of how I drive: https://www.youtube.com/watch?v=QfqLUKWRkTk Bad Roy posted:You mentioned cathing on a regular basis throughout the day - is a permanent(?) cath not an option? Or is this simply how you prefer it? Permanent is absolutely an option, but that would mean I have a tube hanging out of me, and a plastic bag full of urine that I'd need to deal with, strap to my leg, or something. The 'permanent' option is called a Foley catheter, and basically that gets inserted. THere's a second passage to inflate a balloon, which keeps it inside the bladder, and prevents it from being removed unintentionally. I'll use one in a circumstance where I can't or won't go to the bathroom for a long period of time - if I end up sick, I'll just put one in to spare me from bathroom runs while I sleep, or if I'm planning to take a long road trip (say, drive to San Francisco). Same goes for whenever I get on a plane... I'll just go the indwelling route. But for my day to day, it's intermittent catheterization. More involved, but in some ways, lower maintenance. The risks are increased for bladder accidents and such with the method I use, but the tradeoff is fork bomb posted:So you never dream that you're ambulatory? Not really, no. I like the body I have - I'm more comfortable now than I ever was at any point in my life. The status quo works for me. drat Bananas posted:Very interesting thread, thanks for sharing. Pregnancy works normally. Births are USUALLY by c-section, but natural births can occur. Contractions are largely autonomic in nature... I live in California, so ADA compliance is generally a pretty good thing - most buildings out here are fairly newish. I've been in older office buildings with inaccessible bathrooms, a lot of facilities don't have elevators. I haven't really encountered many problems at all. One major exception - is streets in San Francisco, especially downtown. Downtown is relatively flat, but the sidewalks very often don't have curb cuts for easy access, and those that do are often too steep. A common issue I've run across is ramps that are simply too steep. I'm very strong and fairly young, and in good health and good shape - and if I have a problem pushing up the ramp, rest assured that people with slightly less capability than myself will find themselves unable to do it.
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Oct 22, 2014 03:33
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swickles posted:I do not have a spinal cord injury, but I grew up with a father who was completely paralyzed from the T4 (refer to the chart above, or if lazy, about the nipple line) down. His accident occurred about 3 months after I was born, and also had a mild TBI that affected his coordination among other things. While I can't tell you whats its like directly, I can answer a lot of questions about a different variety of spinal cord injury. While he was mostly independent for many years, he could never drive like you. Also, seconding the bathroom thing. Eventually we said "gently caress it" and completely removed the door and installed a smaller toilet to give more room for maneuvering. I consider myself very lucky - if I *had* to end up this way, I'm thrilled that I didn't end up as a quadriplegic - I'd have no independence, privacy, or control over my life. T4 is definitely higher up - and I know that folks that high up have even more issues with stabilizing themselves while sitting up. I have enough issues with stabilizing myself. I do have pretty good balance, but if I just let go of holding onto something, or resting on something, I'll inevitably fold over. One of the few things I recovered was some trunk control, so I have better balance than most in my situation. I lost about 70 pounds after the injury. It was not mainly from muscle mass, but fat loss. I was quite overweight. Yes, a good amount of muscle was lost in my legs - they're basically sticks compared to what they used to be, but I lost the weight through intake restriction, went down from a size 20/22 to a size 14 now. I simply didn't eat much, and what I did eat I made sure was healthy. I have been able to maintain this weight for a year now - I have not gained any additional weight. I am very motivated to keep my current weight - it has made life MUCH easier, transferring easier, every aspect of my life is markedly improved. Plus, I look a heck of a lot better. I am constantly moving, but yes, proper cardio is very difficult to get - if not impossible. There's a particular workout machine I want to get which would give me the cardio option, but I don't have the $6,000 to spare. They really gouge the disability world on prices for everything...
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Oct 22, 2014 04:53
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When you left rehab, how well prepared did you feel for returning to independent life? Anything in particular you wish you'd been told? Have you maintained the same social group you had beforehand, and if so, how did your friends react?
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Oct 22, 2014 06:16
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ValleyGirl posted:And of course, most of those people with placards can walk for hours on end. Is there any movement in the disability world to influence this? Politically, or informing doctors or anything?
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Oct 22, 2014 08:23
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