14 replies to this topic

[RehabRhino]

Hello

I'm interested in hearing from members (injured or their spouse) about what aspects of their own care SCI people achieve independently.

For example; cathing, bowels, transfers, dressing, eating, pushing a chair. .. ...

I'm C5/6 inc and currently trying to be more independent so that my wife doesn't have to do as much.

I have a carer for 1 hour every morning to help me up, do bowels (mine are near normal function, thank god, but I cannot get on and off commode on my own) but would eventually like to do as much as possible on my own without relying on my wife.

What do other members manage for their level and who helps them?

[hillarymcarter]

My husband is an L1 so he has a lot more movement than you. I'll give you our daily routine but you have to keep in mind that our house isn't accessible yet so he can't go to the bathroom or shower by himself yet.

12am-I cath him because he can't go into the bathroom to empty it out
6am-cath again and make sure his blue pad is clean
8am-get his pills ready and make his breakfast
8:30am-wound care nurses come to house
9am-I give him a pail of soapy water and he gives himself a sponge bath
9:30am-I put his briefs on him but he dresses by himself
9:45am-He transfers into car by himself and I load up his chair
10am-He goes for hyperbaric treatment by himself (I drop him off)
12pm-He caths himself at hospital. Rehab bus picks him up at hyperbaric and takes him to gym (He packs sandwich for lunch that he makes himself)
4pm-Rehab bus brings him home and he transfers into recliner by himself or he gets on the floor to play with our dogs
6pm-I cath him and I prepare supper (He can cook but I prefer for him not to! )
9pm-He gets into bed and undresses by himself then I do his bowel routine

Then we start all over again! He can do a lot of stuff by himself and will be able to do more when our house becomes fully accessible. I do a lot for him but he sincerely appreciates it so I don't complain! I can not work right now though and I can only take a couple classes at university because his schedule is so busy and he can't drive yet. Your wife will probably always have to help out but the important thing is that you let her know how much you really appreciate it! I don't mind a bit because I know one day when I'm old he will take excellent care of me!

[wheelie182]

hello,

Im 17, a high para, no sensation from like the nipple down, i do everything myself, but tell us more about what exactly you can feel or control,

to be honest if you can learn to live without a care or help i strongly suggest you do it, im sure it would be a lot more enjoyable, not having to rely on other people.

specialy when driving etc, ive just past my test and have been driving for about 2 months, what a difference it has made, not having to rely on taxi's, or not going out when you want to, and only when a family member is avaliable to give you a lift, once i was waiting for a taxi for 2 hours outside college!!!

My house is not that perfect, but im able to do everything i want, the only adaption i have is a stairlift (which is a right pain in the a**, so sloooowwwwww!!!)

But what are you struggling with? we might be ale to give some ideas or advice

[carolline]

Hi Rehab Rhinno
Being independent,it depends on your movements and sensation.As you mentioned you're C5/6 incomplete,and how long you've been injured.How's your control to your upper limbs?Is there no involuntary movement of it?

Let us know and we'll trying to help you.
Have a good day!

[RehabRhino]

Thanks for replying, maybe I should have explained a little bit more about myself and my sensation and motor function.

My sensation is about 85 per cent normal and I have pretty good balance. I have wrist extension but my fingers don't work very well, so I have minimal grip.

I can transfer almost independently with a sliding board, wash myself, dress my upper body, cath myself. As I said before, my bowels are pretty normal so I don't really need help with that.

I was really interested in what other people could do for their level of injury.

I am lucky in that I don't suffer from any pain, although my shoulders do ache from exertion.

[wheelie182]

As far as i learnt, the most important thing (well for me) was to learn floor to chair, because if you can do that, you can take risks in doing bigger transfers, because your not worrying about falling and not being able to get up, and if you do fall, make sure its a controlled fall, you know, if you feel yourself falling, dont just drop, try and slide down.

I remember using a sliding board in hospital, when i would go out places i would always have it with me, but you should really learn to do with out it, cause if you keep using it time and time again you'll find it hard to learn not to use it, i think i only used it for about two weeks, and then i just slung it under my bed and decided i wouldn't use it again, it will be difficult but in the long run its the best thing because then you dont have to carry it round with you

and it improves your strengh and balance and your confidence

[Bob Clark]

Hi Wheelie,

Being able to transfer floor to chair is a great move to have. It gives you a feeling of independence. I used to be able to do it when I was younger, stronger and thinner but not anymore. I don't have any brakes on my Quickie GPV so that makes the chair difficult to get back up into anyway. It was always a bit of a struggle for me since I never exercised or cared to practice the move. I'm a T-5... that's kinda high for those fancy gymnast moves!

I live alone so don't have anyone here to help me when I fall. I need to scoot myself to the nearest couch or bed while dragging my chair behind me. Being careful that my pants don't fall down so my butt doesn't get bruised, scraped or cut. Then I remove the cushions from the couch to make it lower. Or move the mattress aside to make it lower so that I can hop up onto the boxspring (using the wheelchair as an aid) and then up onto the mattress. It's quite a project and winds me! The last time when I did it I thought I was gonna have a heart attack. But it sure is a nice feeling to get back in the chair. Talk about feeling like a fish out of water.

Other than that transferring is easy. As long as it's only a matter of a foot or less in height. That is transferring up. Transferring down with gravity is a snap as long as I can reach it with my hand. But the less height the better!

One time while adjusting my sitting position in my chair I got a muscle spasm that caught me by surprise. I fell straight back outta my chair and banged my head on the tiled kitchen floor. I was unconscious for awhile and upon awakening decided to head for the bedroom. While struggling to get up onto the boxspring the bedframe collapsed. I just happened to be storing 8 - 4 foot long flourescent tubes under there. You know... so they'd be safe and out of the way! Well I managed to smash all 8 of them. What a mess that was to clean up.

[RehabRhino]

wheelie182, on Aug 12 2005, 05:44 PM, said:

I remember using a sliding board in hospital, when i would go out places i would always have it with me, but you should really learn to do with out it, cause if you keep using it time and time again you'll find it hard to learn not to use it, i think i only used it for about two weeks, and then i just slung it under my bed and decided i wouldn't use it again, it will be difficult but in the long run its the best thing because then you dont have to carry it round with you

Thanks. I would love to get rid of it, but that's easier said than done when you're C 5/6. Without grip or triceps there is no lift, so until I get a bit stronger I think I will still be sliding.

[wheelie182]

Hello RehabRhino,

I must admit that it is very difficult, the idea of transfering on your own when you have recently just had your injury, even if your level is lower, the thought of falling is always there, but it can be done without a sliding board, of course you need strengh, but i would say more of it is technique, some people dont actually lift your themselves that high, they just lift their skin off the surface and swing their body to the place they want.

I take it that you have left hospital already, do you still have physiotherapy?

i dont, but i always am done on the floor stretching, and am always down the gym.

But i suggest that you always practise transfering its the best way, i can remember when i left hospital and i was able to do floor to chair, but 2 months after i came home, i went down on the floor to get somthing, and i just couldn't get back in the chair, i did after about 5 attempts, but i had lost the nack of being able to do it, and then since then, i aim to do floor to chair at least three times through the course of the day, now i can easily do it, but it is very important that you always practise things, such as that, doesn't matter how well you can do it, because there will come a time when you need to get back in the chair, and because you haven't done it for while, you probaly won't be able to do it for a few attempts, and will injure yourself in trying.

I was in rehab with a tetra, much the same as you, (do you have any feeling or movement below the chest?), and he could do everything just as well as me, but because he had lower abilities than me, in my opinion he was a stronger and more skilled person than me, even though we could do the some stuff, he could do it wih very little arm and hand strengh, which is what you'll be like

[keps]

I am T2 complete, and I find it next to impossible to transfer without a board.
I try my utmost to get a good lift, but my arms are short in relation to my trunk, and it's just not possible for me to get a clean lift!

Every one is different.

[RehabRhino]

wheelie182, on Aug 15 2005, 03:11 PM, said:

I was in rehab with a tetra, much the same as you, (do you have any feeling or movement below the chest?), and he could do everything just as well as me, but because he had lower abilities than me, in my opinion he was a stronger and more skilled person than me, even though we could do the some stuff, he could do it wih very little arm and hand strengh, which is what you'll be like

Wheelie

I completely agree with you that practice is the key, and there are loads of people with my level that do transfer without a board so I'm determined to do it. I'm getting a lot closer - when I left hospital two months ago, my transfers had improved, but I still needed quite a bit of help. Now they are a lot better, and virtually independent, although I don't fancy floor to chair yet!!

I've bought some weights today so that I can start working out and increase my strength to help with transfers.

Cheers

Rhino

[RehabRhino]

Keps!!!!!! We meet again

[keps]

yoo hoo Rhino!!!

[wheelie182]

The main thing that i was taught was.......GET THAT A** UP

which i agree is very hard to know if you are lifting high enough, when you cant even feel it. when i was in rehab they had a big mirror, which i found useful, so you could see how high you were lifting.

Im sure your wife will have one, they seem to spend a lot of time looking in the mirror at their backsides too..........Does my bum look big in this? LoL

[carolline]

Hi Rhino,

You need a lot af practice and trying,don't give up!
Everything you do,wiil have a good result.And you need to improve your grip.So keep on exercise and good luck for everything.For being optimistic is a great help for you.

Once again,wheeli attacked again!!!
About the mirror it's true,I saw it when our SCI patients facing a mirror while doing their excercises.

Have a nice day!