Ask the Paralyzed Guy

In My Humble Opinion
1

In the spirit of Corporate America, I’m going to try to cash in on the recent popularity/flood of these types of threads and force feed the members of the SDMB another one of these “Ask the . . .” threads.

Any questions you have I’m willing to answer to the best of my ability. Don’t worry about offending me, just go ahead and ask anything you want to know or are curious about. No questions are stupid. Hopefully this will be informative and maybe I can even fight some ignorance along the way.

Fire away.

2

Some background might help us ask more intelligent questions: What is the nature/history of your paralysis? If you were ever not disabled, how difficult was the transition? I have a few other questions, but I’ll hold them for your reply.

3

I’ll bite. This is probably a question I wouldn’t have to ask if I had a better understanding of anatomy: why is it that some things continue to function even when muscles in that same area don’t? Do these things work automatically, without needing signals from the brain? Or do those nerves travel a different route than the nerves controlling gross motor movements?

That is, say you’re paralyzed from the chest down. Your stomach still works–it still digests. Your intestines still work (although if memory serves, perhaps not enough to have normal bowel evacuation–no need to address this if it’s TMI). So what’s the deal? How come these things go on working even though your brain’s communication is cut off with the rest of your body parts down below?

4

Yeah, I guess background could help. I guess I could still be considered to be fairly new to the “club.” Almost two years. Was in a car accident senior year in high school (no drinking or drugs were involved). I flipped my car down a hill.

Regular wheelchair I guess you could call it. I have to use my arms for pretty much everything, so it’s a good thing that I can use them the same as I could before I was hurt.

Yeah, to get an idea of where I’m paralyzed the doctors told me it’s pretty much from the “nipple-line” down. My stomach still works, I’m not sure if I can always tell when I’m hungry, this can be good and bad. It’s kind of weird too. When I first got hurt I didn’t feel hungry and wouldn’t eat. My stomach doesn’t have any muscle tone since I have no control over my stomach muscles, so I wanted to make sure I wouldn’t get too fat. I didn’t think I was hungry, and thought it was just because I wasn’t using as much energy as I used to, so I didn’t eat very much. This was a bad idea because your body needs nutrients and I ended up getting a pressure sore from not having enough nutrients.

My intestines still work I guess, but you’re right (TMI warning) not everyone (although some) can go “naturally.” I think it has to do with the autonomic nervous system. If there’s a doctor in the crowd that has a better understanding or could explain better, feel free.

5

Is it just that you’ve lost contact with your motor neurons (i.e. you can’t move your muscles), or is it sensory too? Can you get itchy in paralyzed places? Do you get the equivalent of phantom limb pain (in amputees, sometimes the limb that isn’t there hurts)?

6

OK, that does help. You may be in a pretty good position to answer a question that I’ve wondered about for a while. I’ve always wanted to pose it to someone who’s “been there.” And I’d like to preface my question by saying that I mean absolutely no disrespect or judgment of anyone who sees things differently, especially those who have been through it.

In my observation, it seems that a lot of able-bodied people see “simple” physical disability (by “simple” I mean little or no persistent pain, retaining your mental abilities, and still being able to move around on your own with a wheelchair, cane, or dog) – paralysis, blindness, deafness, amputation – to be “the end of the world.” People kill themselves over it. They get divorces over it. Overwrought victims, parents, and spouses go on endless medical quests to put things back the way they were – “If only I/he/she could walk/see/hear again.” It goes way beyond the point where the denial stage of grief should have ended.

Now I fully understand that a physical disability (let’s stick with paralysis here for simplicity) is no picnic, and rehab is a long, hard road. You have to remodel your house, or find a new one, or even live in a facility. You have to find new ways to perform basic bodily functions. You have to deal with people staring at you and making rude comments or asking dumb questions. And on and on.

But I’ve always felt that for myself, I’d have a hard time working up a “poor me” attitude if I suddenly couldn’t walk. There would be an adjustment period, but life would go on – only with some changes. I would be essentially the same person, with perhaps a bit of “character” added. I sit at a desk to work, so I could still earn a living. I would still have the capacity to enjoy being alive. Lots of people who use wheelchairs hold jobs, raise children, and seem to lead happy lives.

Do you think that this is an unreasonable outlook? After two years, it sounds like you have adjusted to your new situation. I’ve read several autobiographies of people who’ve been paralyzed (Christopher Reeve and John Hockenberry are two that come to mind), and I’d like to think that I’d get back on track as well as they have.

I guess I’ve said all this to mitigate what I know sounds like a totally insensitive question, although I don’t mean it to be: Is it really all that bad to be paralyzed?

[sub](What about the other disabilities I mentioned? Blindness would make it hard to edit books, but (1) I’m already severely nearsighted, so I guess I’d just throw out my glasses, and (2) I’d work up my musical abilities, or find a way to teach. Deafness would be tough, because I’d lose music, which I love dearly, but I think sign language is a lovely medium of expression. And I could still drive. Amputation? I hope it’s the left leg I lose, because it would suck to lose my right leg and still have to deal with the ingrown toenail on the left. :wink: I think I could deal with losing one arm, although giving up the piano would be tough (but I would still be able to sing), and losing both hands or arms would be pretty bad.)[/sub]

7

Yeah, it’s everything. I can’t feel or move. Yes, I did have phantom pains, and I still get them occasionally. I really had them bad right after the accident. It was pretty irritating to have these incredible pains in my legs and have everyone telling me they’re just phantom pains. After doing some studying I understand it better. Phantom pains is a really bad name for them though. It might not have been my legs actually hurting, just my mind telling me they were. “Phantom” seems like it’s being implied that I’m just imagining them, but the pain was very real, even if it was all just in my head it still hurt.

Everyone is different, so this is a hard one to answer. I think it really depends on what your interests are, what’s going on in your life when you’re hurt, etc. I do think about killing myself. I liked to play a lot of sports and be real active, and go party with friends before. Now I can’t live the same way. I have a lot of back pain partly because I don’t have any use of my lower back or stomach muscles, so it’s hard to sit up straight. It is a huge adjustment. I mean, for the most part, I’m in a good mood most of the time, but little things can just really make you sad.

Like I said, I think the situation you’re in when it happens is a huge factor. I think the more stability you have the better suited you are to adjust. I have a great family, but at the same time I’m learning a lot of new things (living alone, college, etc.).

I don’t think it’s unreasonable to have the outlook you do, but it’s really hard to know until you get into that position. I don’t know about the other disabilities, no disability is really “good.” I know I wouldn’t want to have to pick a disability.

If there’s something else that you want answered that I missed, just let me know.

8

Thanks – I appreciate your answer. You didn’t miss anything, but I’d like to respond to a few of your comments.

I hope you have a counselor or some other helper to help you through these feelings. And I won’t get up on the soapbox here except to say please be good to yourself.

Yes, here’s where you and I differ. I’m not all that physically active, and I’m as happy at a quiet gathering as at a noisy party. And being a single ~20-year-old guy vs. a 33-year-old married woman probably also makes a difference. :wink:

Again, this may be a difference in life perspective. I can look back and see several life changes. I sure don’t live the same way I did when I was 20 either. And I do see life as a continuum with occasional irreversible breaks along the way – deaths of loved ones, loss of a job (just went through that one when Mr. S got downsized – we’re still working that one out) – and so on. When you pass one of those, you can’t go back. But who knows what’s on the other side? If I hadn’t gotten fired from a job 14 years ago, I probably never would have met my soulmate Mr. S. I guess I’ve had a lot of examples in my life where bad turned into good. Or at least that’s how I see it.

I agree about having a good base to start from. And dealing with living alone and adjusting to college is tough even without your extra baggage.

Very true about any situation. If I get hit by a bus tomorrow, I may well find out that I was totally wrong.

Here’s a lighter question: Have you ever seen the movie The Waterdance, with Eric Stoltz as a paraplegic recovering in a rehab facility? If so, did it seem accurate to you? I understand that the writer/director/producer/ (I forget which) based it on his own experiences.

9

Here’s a few that I’m surprised haven’t been asked yet…

  1. Does “little Dignan” still work? As in, do you get a physical response when aroused?

  2. This doesn’t apply to you so much but, How do paralyzed women have sex? It would seem almost impossible for men for obvious reasons, but I know of at least one woman who was paralyzed from the neck on down with very limited use of her arms, who had a child completely naturally. Isn’t that kinda sick to think of her husband just sorta doin’ her without her getting any pleasure out of it?

If you find either of these questions offensive, I appologize in advance.

10

If I saw you coming out of the drugstore in town, and smiled, and gave you a hearty, ‘Hey Buddy, how’s it rollin’?’ Would you think me a boor?

11

Not being paralyzed, I suppose I’m not really qualified to speak on this point, but it doesn’t seem particularly sick to me. I don’t get any physical pleasure out of performing oral sex, for instance, but I do get a big kick out of knowing I’m giving pleasure. This seems like the same sort of thing.

12

I think I should clear things up a little bit more. There are different kinds of injuries that can happen to the spinal cord. It can be severed, but in most cases it’s usually bruised. This is what happened to me, I bruised my spinal cord. The cord above and below the bruise still works, it’s just that little bruise that keeps me from being able to walk.

When the cord is bruised it is possible to recover fully and function completely, or not have any recovery. It is also possible for some people to be able to feel, but not move, or move and not feel. People with either of the things I just mentioned are said to have an “incomplete injury,” meaning that signals can still get through the spinal cord. If there is no functioning below the bruise then it is said to be a “complete injury.” Complete injuries usually mean that you aren’t going to gain anything and you’re more or less stuck (me).

Scarlet, sorry I haven’t seen the movie. I didn’t mean to worry you either, I was just trying to show that no matter how stable you feel you can still get really down.

Star light said:

It still works as in I can get an erection if physically aroused, but I can’t just get one by thinking about something like I could before. As I said above, the little bruise is the only thing preventing me from functioning completely. For instance, if I drop something on my foot, my leg will jump and kind of act “hurt.”

I imagine women just lay on their back. It’s not impossible for men, as I stated above. I just wouldn’t be able to get the feeling and I don’t know how the orgasms work.

As long as she wasn’t raped I don’t think it’s sick. I imagine having sex to get someone pregnant is much cheaper than artifical insemination or something like that. If the two people care about each other I think it would still be pleasurable. Also as I said above, it’s entirely possible that she might have some sensation in the lower parts of her body.

I don’t think I’d be bothered by it, personally. Others might though. I’d be careful, unless you know the guy and know he wouldn’t mind. Just a normal “how are you doing?” would be better. If I was in a certain mood it could bother me. It’s not fun to be reminded that you’re in a wheelchair. By now I probably wouldn’t give it a second thought, but I might think you were just trying to be funny and make light of my situation instead of being friendly. I’m not saying it’s not OK to joke, but if you don’t know someone, it’s probably best not to say something like that.

13

I’m assuming that people are rude enough to ask you really personal questions when they see you on the street. How do you respond to people asking how you were injured, what your level of functioning is, etc.? Do you respond differently to kids when they ask?

14

The question about why only some things don’t work I think I might know. I have heard that stomach muscles have alot of nerve cells, enough to be called a second brain:)[sub]The little one[/sub]

15

I really haven’t had anything like that happen. If I’m having a conversation with someone they might ask, but they’re very polite about it. Usually they say something like, “if you don’t mind me asking, what happened?” An old friend that I hadn’t seen in a couple of years and I were talking, they asked “so what’s been going on with you?” I haven’t encountered any rudeness yet. I haven’t had any kids say anything to me either. If people want to know anything I tell them so that maybe they can get a better understanding.

I think it could just be that if there’s food in the stomach then the stomach will absorb whatever is there.

16

It would depend what area of the the spinal cord was affected. They determine this with a simple system, I think they use C1, C2, etc. The lower the number the better you’ll be, I guess.

Do you think ADA laws are a hinderance or a plus, Dignan?

17

Hey Dignan, thanks for your cander starting this thread was a great idea.

My mother-in-law was paralysed by a stroke last spring. It’s been quite a journey for us. It has also been an education for us, her caregivers. Just learning about how to care for her could have been a 3 yr degree! It’s been a lengthy and trying process, for sure, but we’ve all made it through. We’re still dealing with it and still learning, I hope.

I was, in the past, and will be again, in the near future, her primary care giver. She is entirely bedridden and incontinent. She is 80+ yrs old and the stroke has cost her the independence she cherished. But she’s a fiesty old bird and her spirit, while it ocassionally lags, shines strong still.

Maybe it’s generational, or maybe it’s just a personality trait, but she (and her offspring too, truth be told) have a really hard time asking for what she needs or wants. I can appreciate her difficulty and why it’s hard, I’m sure I would have the same difficulties, but her caregivers can’t read her mind.

I’m always trying to think of ways to improve her way of life, little things, like a clockradio with large enough numbers for her to read, drawing a big calendar as she has a hard time keeping track of the days (who wouldn’t?). Some of these things have been a success and and some, I think in hindsight, have been to satisfy me it seems and have no bearing on her. It is frustrating, and I’m sure there are things I could do that I’m just not thinking of. Hard as I try somedays nothing works.

I’m sure you had dark days in your recovery and I’m sure you had difficulty asking for assistance with things.

Would you mind telling me, during your recovery, what helped you? Were there any little things that were a big difference in your life? Anything that helped you get passed the ‘having to ask’ retisence?

We’re all still learning our way along and any pearls of wisdom would be greatly appreciated.

18

Regarding the paralyzed woman and sex issue, I have a neighbor who had her spinal cord severed with a bullet (she was attacked by a raging ex-girlfriend of her boyfriend, the ex-g/f was killed in the return gunfire). She has made it clear she’d like me to jump her bones (I politley declined), but the thought had DEFINITELY crossed my mind about sensation and orgasm. If she didn’t want to bag me, I would feel comfortable asking her about it. But she does have relations with guys, and apparently enjoys it.

Dignan, when people offer to help you (carry stuff, push your chair, things you CAN do) how do you feel about it?

19

handy, I’m not real familiar with everything that the ADA is supposed to do, but I don’t see how it could be a hinderance. As best I can tell, it’s been a huge help, people have to make things accessible. Even though a lot of the time things are still inaccessible (example: clothing racks at stores) I think that it’s made it so that people are aware that they need to acomodate me.

elbows, your situation is much different from mine, but I’ll try to help. If she’s entirely bedridden then I don’t know how much she can do on her own. I can do a lot of things on my own and at first family members would constantly ask if I needed help or try to do things for me. I would tell them that if I needed help I’d ask them. At first when I was trying to do things on my own and having a difficult time I’d get frustrated and then get mad at who ever was with me for not helping me. I knew they couldn’t read my mind, but I was frustrated and would project that on to them, I guess. No matter how frustrated you get, try to remember how hard it is for your mother-in-law. Try your hardest to have patience with her if she gets upset. The best thing for me getting through rehab was having company. Relatives and friends being around were a big help. I’d get mad at them sometimes, but having them around was very important. A lot of little things that just let you know that people haven’t forgotten about you are good, like getting letters and cards while I was in the hospital. Your mother-in-law is probably past that stage, so maybe in her case you could just let her know how her grandkids (if she has any, and likes them) are doing, or what the price of gas is or something, I don’t know, just keeping a conversation going is nice. Since she had a stroke I don’t know how well she can speak or anything like that. Sorry that I can’t help more.

UncleBill, I appreciate people offering to help even if I’m not in any need, I just say, “no thanks” and smile. The tough thing is that when I do need help it never seems to be around! I can do pretty much everything on my own, but when the weather is bad getting around is a pain in the ass. When it’s raining or snowing a push would be very helpful (can’t hold an umbrella if I’m using my hands to push!).

Note: to the lurkers, what is the deal? Ask questions people! I’ll answer anything, this is your chance! I can’t believe that the ask the Neo-Pagan Guy thread has more posts! There isn’t anything debateable about this but maybe I should’ve put it over in GD. Sheesh.

20

I dated a woman in a chair for a while, so I’ve come across some of these issues, but I’m still woefully ignorant. So I’d like to thank you for the opportunity to ask some questions.

1.) When I encounter someone in a chair I have conflicting emotions – you don’t want to mention anything about it, lest you seem boorish. On the other hand, it’s so obvious that not mentioning it seems equally boorish. So you try to ignore the person altogether, which seems even * more* boorish. I think you can help us all out by saying just what would be the best – how should people react to a person in a chair? What is reasonable conversation etiquette?

2.) Iwas surprised that the woman I knew REALLY hated light snowfall – until we went somewhere in one. I didn’t realize that even a very light snowfall registers on the hand-hold part of the wheelchair wheels, so even a light snowfall meant gloves and general wetness. What are the other unexpected inconveniences that you run into, and that you wish people knew about.

3.) I think one of the great devices she had was a long-handled “grabber” that she used to get small objects from the floor or from shelves. Again, it never would have occurred to me, but the need must be obvious to anyone in a chair. What device would you like to have (or see invented) to make life easier?