12 replies to this topic

[EssayHelp]

Hey, I'm not injured and know very very little about SCI's. But I've been assigned an essay from one of my professors to do research on a number of topics, and this seemed to be the most interesting. So I guess I'm just asking what are some things that would describe what having an SCI is like? All I can really come up with is accessibility, but I'm sure there's so much more to it... Anyway, I guess post up the changes the physical, mental, and social changes you may have gone through, and if you've got anything to suggest I throw in, I really appreciate it. It's a very general topic assignment, and I'm terrible at just building an essay out of nothing. lol

Thanks!

EDIT - and this is due in about 2 weeks when the class starts, so I've got plenty of time.

Edited by EssayHelp, 03 August 2011 - 01:51 AM.

[Vanessamaee]

I was just injured 3 months ago at the age of 16. at first the best way I could describe SCI to people was being trapped. It was like no matter how hard I tried to move my legs I couldnt. Id even pretend to kick nurses who made me mad just because it made me feel better (: Now I would just say its a life change. It's kind of like a giant problem solving puzzle. Theres no such thing as really rushing to go somewheres because now you have to plan ahead. Its really hard to just describe a SCI or being paralyzed though without writing a book. Perhaps if you had some more specific questions, I/we could be of more help (: good luck with your essay though! feel free to PM me if you have any questions too (:
Best of Luck
Vanessa (:

[lavenderthistle]

Check the boards and read some descriptions. I can tell you from "my experience" It's unlike anything I would have ever guessed. I'm not "paralyzed" I'm a walking SCI. I can feel all my extremities, most parts of them anyway. I have numb patches, I have muscle weakness, in all four limbs. I have to use a cane to keep my balance on uneven ground and in crowds. I can't turn my head to look at anything and walk or my left leg will go that direction. My right foot has now started doing it. Going down stairs is worse than up. My legs feel like jelly. If you have ever gone to the gym and worked your legs too hard then tried going down a flight of stairs you will know the feeling. My hands don't respond right. I have to stare at my fingers when I type to get the right letters. I feel like I have the flu, constantly tired. I feel like I'm running against the surf. Every action takes so much more energy. I have little appetite, digestion takes a lot longer. The best way I can describe what my hands go through and have you possibly be able to recreate it yourself is.....put your hands in ice water until they go numb, then try to untie a knot or tie your shoes, or separate frozen chicken under cold running water. Your hands are moving and working but the feeling is greatly diminished, the responses are slower, and your fingers are numb. Oddly the more you move them, some times the more you move them and try to do, the less they do, until they just stop and start to curl up. Now put your hands under warm not hot water...that burning buzzing fire-ant like sting you feel is nerve pain, it's also similar to a wasp sting if you have no idea what a fire-ant is. I have that all over from C6 down. I have a few hypersensitive spots that feel like large burns with popped blisters when anything touches them. My palms feel like a raw sunburn or like I've grabbed a pan I didn't know was hot. If you've ever taken just a bit too much nyquil and gotten that crawly feeling...that's what I have all over my scalp. I'm probably not what you had in mind when you asked about SCI...but it comes in many forms and some people just don't realize it. I didn't. Happy writing

[Steven K]

If you really wanna know what SCI is like, just message me or any of the 20,000 people registered on this site....

[EssayHelp]

Vanessamaee, on 03 August 2011 - 01:53 AM, said:

I was just injured 3 months ago at the age of 16. at first the best way I could describe SCI to people was being trapped. It was like no matter how hard I tried to move my legs I couldnt. Id even pretend to kick nurses who made me mad just because it made me feel better (: Now I would just say its a life change. It's kind of like a giant problem solving puzzle. Theres no such thing as really rushing to go somewheres because now you have to plan ahead. Its really hard to just describe a SCI or being paralyzed though without writing a book. Perhaps if you had some more specific questions, I/we could be of more help (: good luck with your essay though! feel free to PM me if you have any questions too (:Best of LuckVanessa (:

I'll try to come up with some more specific questions this week. And I do realize it's probably weird to describe this stuff to someone who doesn't know lol. I really appreciate your response!

lavenderthistle, on 03 August 2011 - 03:16 AM, said:

Check the boards and read some descriptions. I can tell you from "my experience" It's unlike anything I would have ever guessed. I'm not "paralyzed" I'm a walking SCI. I can feel all my extremities, most parts of them anyway. I have numb patches, I have muscle weakness, in all four limbs. I have to use a cane to keep my balance on uneven ground and in crowds. I can't turn my head to look at anything and walk or my left leg will go that direction. My right foot has now started doing it. Going down stairs is worse than up. My legs feel like jelly. If you have ever gone to the gym and worked your legs too hard then tried going down a flight of stairs you will know the feeling. My hands don't respond right. I have to stare at my fingers when I type to get the right letters. I feel like I have the flu, constantly tired. I feel like I'm running against the surf. Every action takes so much more energy. I have little appetite, digestion takes a lot longer. The best way I can describe what my hands go through and have you possibly be able to recreate it yourself is.....put your hands in ice water until they go numb, then try to untie a knot or tie your shoes, or separate frozen chicken under cold running water. Your hands are moving and working but the feeling is greatly diminished, the responses are slower, and your fingers are numb. Oddly the more you move them, some times the more you move them and try to do, the less they do, until they just stop and start to curl up. Now put your hands under warm not hot water...that burning buzzing fire-ant like sting you feel is nerve pain, it's also similar to a wasp sting if you have no idea what a fire-ant is. I have that all over from C6 down. I have a few hypersensitive spots that feel like large burns with popped blisters when anything touches them. My palms feel like a raw sunburn or like I've grabbed a pan I didn't know was hot. If you've ever taken just a bit too much nyquil and gotten that crawly feeling...that's what I have all over my scalp. I'm probably not what you had in mind when you asked about SCI...but it comes in many forms and some people just don't realize it. I didn't. Happy writing

No, I want all types. I'm trying to get a general idea of it from people who've had experience, and you're just more insight for me. And I know the working out reference exactly! Leg day then 6 flights of stairs to an apartment. And I'm having a hard time wrapping my head around the physical feeling of it... I get what happens, scientifically, but it's hard to imagine. I'm gonna try the hand in ice thing tomorrow. Thanks!

[wheeliebear75]

Well 1stly there are a lot of misconceptions that up until I JOINED had no clue; most people think a spinal cord injury is an "all or nothing" you either remain totally unable to move or you heal & after a few weeks or months everything comes back & they're just left with "a bad back"....but actually we're every shade of gray, another misconception is that because we have numbness or inability to move the extremity that it has NO feeling including about pain...surprisingly enough the nerve pain that often comes from a lesion is excruciating!

People can be considered "quad" even though they may have some strength in their arms because the hands/fingers themselves are still effected. And people can still be considered a paraplegic even though they're able to walk with aides such as braces & crutches.

I don't think anyone can truly convey the turmoil of emotions & storm of raining ! Loss of friends & for a time even the loss of one's identity.

Read the stories of members & you'll start getting a feel for how our lives are effected by our SCI but also of how the lives of those we love are effected. SCI does not just effect the person injured/sick it attacks anyone & everyone involved/anyone who does or will love that person.

[ZEN12many]

T12 incomplete

Get up about 6:30 am (I get up early to walk the dog but also I give up trying to sleep since I have to get up so often at night to go pee (every 1.5 hours about).

Go into the bathroom. Transfer to toilet. Get lots of toilet paper ready. Get lubricants and glove. Stick a lubricated finger up rectum to get things started. Take it out. Finger might be messy if lucky. Clean off glove and wipe butt and do it all again. After 30 to 60 minutes, I will be done on the toilet. [Note: anytime I leave the house, I go through this process before leaving the house - will take from 5 minutes to 30 -- makes it hard to go somewhere to arrive at a certain time].

Transfer to chair and then to shower-chair and take shower. After shower, brush teeth, shave, then stand up to see if I can pee before going outside with the dog (if I don't pee now, I almost certainly will get outside and then have to pee and I might not be able to make it back inside to pee).

Take the dog on a walk (actually she takes me on a ride - she pulls me in my wheelchair).

Make breakfast for the dog and cat. Then make breakfast for me. Hold plate in one hand while I wheel with the other to propel the wheelchair. Wheelchair goes in circle; change hands and wheelchair goes in circle in opposite direction. Keep semicircling until I get to table.

Get out of chair and into reclineer. Can't stay on butt too long. Watch TV. Opps, have to pee. I have about 30 seconds to get to the bathroom. [During the day, I have to pee about every two hours. That's an average. When I go out, I cathetor before I go out, so that I have the longest time before I have to pee again. While I'm out, I have to look for a bathroom after 1.5 hours since I can't wait until I feel I have to go since that would be too late.

Doorbell rings. I get out of recliner to transfer to chair; wheel over to door; try to open door; wheel back a little to give door room to swing. It is someone selling something that I don't want. He leaves and I wheel around to shut the door. Lots of work for nothing.

Day goes by about the same. I might go outside and try to do some yard work. Lots of leaning over to do things which is hard on my back. [Note: I went and tried to pee before going outside].

Might go shopping during the day. Hard to carry things when you are in a wheelchair. Might not be able to find a van accessible parking place when I go out.

Finally time for bed. Go in the bathroom for 30 minutes for bathroom BM try. Put on diaper. Go to bed. Feet are in pain they feel so cold. Reach down to feel them and they aren't cold. Wrap feet and legs up to try to get them to feel warm. Roll over on other side. Hard to do since legs don't work right. Use the handle on my wheelchair to help me turn over. Opps, I moved; have to go pee. Get up and go pee. Back in bed. Hour and half later, have to pee again.

[Denna]

Hey ZEN12many maybe you should try oxybutynin it might help with the whole peeing every two hours. If I wasnt on it I would have to wear a diaper all the time.
EssayHelp the best post I think you should read is My link and My link its alot to read but most of the things you probably need to know is on there. And the family friend side you can read mostly the caregiver part of the forum

[Irish Wheelz]

I am T6 incomplete paraplegic full time wheelchair user. These are the things I deal with on a daily basis as being a SCI. I cath (urinate) out of my belly button, unable to fully pee out of my penis. Sometimes I get UTI (Urinary Tract Infection) and have to be put on anti-biotic. Have no control of my bowel, can feel if I have a turd, but if I gotta go, I gotta go. Deal with spasm 24/7 that goes from my stomach and back through out both of my legs. I take baclofen 20 MG 3 times daily that reduces the spasm, but does not work all the time. My lungs capacity and breathing function is not normal to those of an able body, so I am easly to catch a chest cold or bronchitus. Transfer in and out of wheelchair to almost anything such as toilets, vehicles, bathtub to the ground, etc. Meeting a women who's her first time dating a paraplegic can be challenging. My only mode of transportation is either the community transit bus or my friends and family. When rolling around town, my sleeves or arm are always dirty from my wheels. Rolling on uneven sidewalks can sometimes be a pain. I have to watch for hazardous such as sharp object on the ground so my tires doesn't pop. It's just not the physical aspect of being a SCI but it can be a mental one too. My SCI happened when I was a baby, but I didn't experience most of it till I was a teenager. I've been in the wheelchair for 15 years and I'm still rolling and never gonna give up. If you got some questions and need some answer, feel free to ask away.

[biggdoggpa]

WOW where would one begin, could be a really really long essay lol, I am AB but my best friend is T-6 T-7 para.. i really wouldn't even know where to begin there are so many changes in life!!! i guess the members above who mentioned to pm them would probably be your best bet!! I can tell you it's like learning how to live again, the simple things AB people take for granted every day could be a chore for some one in a wheel chair. And a lot of the world is not wheelchair friendly. the simplest thing like getting a drink of water is a task at times! bowel training!! cathing!! watching your diet getting showered getting dressed those big ass boots some have to wear to bed lol like i said where to begin!!! pm some one and good luck i hope your essay helps raise some awareness!! if for nothing else maybe some courtesy for disabled people!!

[ZEN12many]

EssayHelp
I remember finding some studies a few years ago, on the internet, where they surveyed SCI persons to find out what "functions" they would most like to have back (should a complete cure not be possible). What was interesting was that "walking" wasn't real high on the list. Yet, that is what most able bodied people think is the primary aspect of the disability.

There are threads on this site covering the same subject but you might want to actually find some official studies to beef up your essay (if this is something you include in your essay of course).

Another very deep subject is "relationships". Where accessibility issues are "frustrating". Relationship issues can be "devastating". "Relationships" is very broad from keeping or finding friends who share your interests to keeping or finding a person to love and be loved.

[Denna - thanks for the advise but I am already taking oxybutynim four times per day - my urologist says frequent peeing would be worse without it].

[Denna]

Zen12many wow thats crazy! Have you thought about botox or something similar? Sorry you probably already know everything thats out there for it but its crazy that you always have to worry about peeing like that. I would go crazy!

[ZEN12many]

Denna
Don't know about botox. About six months after my SCI, my urologist mentioned an operation to kill the nerve to the spinctor. Then I would never pee or leak again but would have to cathetor forever. One way trip. Actually, I pretty much have learned to live with it. I always was a stay-at-home type of person. So now I have more reason. Also, when I "plan" to go out for an extended time, I start dehydrating myself the day before so I don't pee so often.