12 replies to this topic

[carolline]

Hi Ya'll......I'm just wondering about the feeling of being comfortable sitting on chair and lying on bed.I observed this with those SCI person very familliar to their position while on bed and when sitting up on wheelchair.

Question is like this.....
When you guys...how many times you've check and feel that you are in comfortable posittion while sitting on a wheelchair.Have you check if you're in the middle on your chair?Or if you feel it's not,how many times you need to feel and check how is it?Trying to feel comfortable before you meet the satisfaction.

Because we have a patient he is Quad..where having a difficulties when we transferring him on his wheels.He cannot meet the satisfaction at once when we sit him.We need to lift him how many times before he convinced his self the comfortable position.As if he looks fine to us..but still we need to lift and lift up and down,side to side before we get tired.And that's it....he will say..OKAY I'M FINE!!! (awwww..he's so heavy!)

Next question....
When your'e lying on bed...I saw that you're familliar with the sheet folds.It should be like so flat and ironed without any folds on it.The blanket it should be like this and like that.And pillows how many pillows you got?Two on your head..one inbetween your legs when your on side lying.And many more pillows on your bed.

Just asking this...How's the feeling!!!
Is it nonsense question?
Hope that somebody will answer this

[Apparelyzed]

Good Questions! , this one's going to get pinned for question of the week!

I'm very particular about by sitting position, I have to be sat exactly right, as I'm a C5/6, my sitting position affects my balance, and the way I push my chair. I sit very upright for a quad, and try not to slouch, if I slouch, my neck hurts, my push isn't as strong, and my arms get sore.

With quads, nearly all of their upper body balance is derived from moving the head. If I want to lean forwards, the lean is first initiated from moving my head forwards. If I'm not sat correctly, and my hips are not sat on the cusion equally, this throws by balance off, and it's harder to move around in my chair.

In bed, Pillows have to be exactly right as well, and once I'm settled down, the last thing to be done is a quick tug on the bedsheet to get the creases out. If there are no creases to trigger spasms, I can go all night, 8 hours, on one side.

If my head pillows are not right, I get a stiff neck, which radiates down my arms.

So, it's not just your patient being awkward, it's just that we are very finely tuned. Unfortunatly, we can't just shift our weight as a para might, meaning we rely on others with patience to help us.

Simon.

[wheelie182]

Well i tend to lift, move around in my chair all the time, but i usually get comfortable quite quick,

but driving thats a different story, i always have to move around, because i never feel that im quite close enough to the steering wheel, but i usually get comfortable after about 5- 10 minutes,

and in bed, im fine going to sleep........, but as soon as i get wake up, i have to get up, because if i stay there awake i usually feel very uncomfortable, my back starts to hurt

but Caroline.... what you were saying about that quad in your hospital, i think it has somthing to do with balance, i dont think its to do with feeling comfortable, i remember when i was in hospital, and the slightest off balance you are can make you feel really unstable, and i think that mentally this makes you feel uncomfortable... and make you imagine you are uncomfortable...

its weird...i cant feel a single thing below my injury...but when i sit on our wooden toilet seat, and i see my promonent bone on the wood, even though i cant feel it, i make my self imagine it, but not on purpose...., its just because ive seen it... and then i need to get off, because if i dont it drives me crazy, a bit like phantom pain i suppose.

a paralyzed persons mind is a bit tricky i think, but not as confusing as a womens mind their just strange !!!

[hillarymcarter]

I've noticed that if Bruce's blue pad isn't exactly flat underneath him at night then he will be horribly sweaty and sick in the morning. I had no idea that could trigger dysreflexia. The paralyzed body is a very mysterious thing!!

[laura]

hi,
this is a really good question.i wish some of the nurse's and carer's i've known had asked these really important and vital questions.

as a c4 quad/tetra i find my comfort and balance are closely linked. i remember when my physio got out the mirror with the red stripe of tape down it,i wondered how it would help me with trying to sit and stand in a 'balanced' way. but i soon realised that it was really helpful thing to have.

i didn't like the mirror,well the reflection staring back at me but hey!

i find myself correcting my shoulder position and therefore checking and knowing when something lower down,isn't positioned right and comfortable, from that strip of tape. sound silly?

i know what my physio's etc were telling me was off center/unbalanced by what i could see and i can now lead my pa's into what could be a better position to be in whether in bed, in a standing frame or in my wheelchair.

i use my eyes for where i can't feel.

a lot of patience is needed when trying to get into a comfy position. so patient and nurse etc need to bear with each other on this topic! laughter helps.

i,like simon,find if i move my head forward too much the rest of me goes with it! this has lead to many scary moments and ones where i could have cried but chose to laugh instead.

pillow placement is also another interesting adventure! trial and error ususally happens with me! lol

creases in sheets and my clothing also cause great fun! just have to be vigellent. check things and check again. just don't over do it! time can get eaten up by 'fussing' but always be careful.

hope that makes sense. lol

wheelie 182-a paralyzed body is strange,male or female! lol

laura

[AHolland]

For me (T4 para), sitting position does not seem to affect my balance. Comfort is another story.

I have to continually move or I get in a lot of pain. On a really good night I only have to turn myself twice...2:00, 4:30, 6:30 etc. If I don't turn myself the discomfort gets so bad I cannot sleep. It's basically what wakes me up.

I usually roll hard to one side and my wife pulls the under laying spread or soaker pad flat so I can roll onto that side for the night. During the night, I don't wake her up, but try to roll over and do it myself.

I use 3 pillows: head, between knees, behind back to keep me on my side.

During the day, I have to reposition every 30 mins or less or I really hurt. On a bad day, I just give up and head back to bed. I seem to have less pain while laying down than sitting.

[James]

laura, on Oct 14 2005, 12:06 AM, said:

hi,
this is a really good question.i wish some of the nurse's and carer's i've known had asked these really important and vital questions.

as a c4 quad/tetra i find my comfort and balance are closely linked. i remember when my physio got out the mirror with the red stripe of tape down it,i wondered how it would help me with trying to sit and stand in a 'balanced' way. but i soon realised that it was really helpful thing to have.

i didn't like the mirror,well the reflection staring back at me but hey!

i find myself correcting my shoulder position and therefore checking and knowing when something lower down,isn't positioned right and comfortable, from that strip of tape. sound silly?

i know what my physio's etc were telling me was off center/unbalanced by what i could see and i can now lead my pa's into what could be a better position to be in whether in bed, in a standing frame or in my wheelchair.

i use my eyes for where i can't feel.

a lot of patience is needed when trying to get into a comfy position. so patient and nurse etc need to bear with each other on  this topic! laughter helps.

i,like simon,find if i move my head forward too much the rest of me goes with it! this has lead to many scary moments and ones where i could have cried but chose to laugh instead.

pillow placement is also another interesting adventure! trial and error ususally happens with me! lol

creases in sheets and my clothing also cause great fun!   just have to be vigellent. check things and check again. just don't over do it! time can get eaten up by 'fussing' but always be careful.

hope that makes sense. lol

wheelie 182-a paralyzed body is strange,male or female! lol

laura

jameslp60@charter.net

Hi,

I am a t-3 level. been this way for a long time. position is so very crucial to me. in the chair or in bed. it has been a struggle to get my doctors, nurses and family to understand this. However, if i am not sitting correctly(for me), moving around or sitting is difficult. I can lift my shoulders up somewhat but not move my butt. Thus my actual position in the chair remains the same without help.

Laying in bed is the same. I cannot move to relieve any pressure that builds up over a short period of time. Therefore it is important to me to get in and be in the bed correctly to start with.

Pillows are nears impossible :)to get under your head correctly, which once there, remains there until some, god love um, one comes in to check and is willing to help move them around for you, even though the pillows look perfect to them. I have about 6-8 on my bed most of the time.

What is the red strip on the mirror about. To see for yourself how you look in the chair?

Thanks.

James

Just posting this to confirm this para's experience regarding proper positioning, which is hard for nurses and family to realize sometimes, which are relative to your statements.

[Bob Clark]

Hi James,

Are you a para or a quad? You said "para" but since you can't reposition yourself I'm thinking that you're a quad.

When I was in rehab I shared a room with a cop named George. He broke his neck diving into his swimming pool at home. He was very tall (6'5"?) as he said his head would constantly hit the roof of his patrol car. But being so tall I guess is what broke his neck diving into only 7 or 8 feet of water. He said he did it 100s of times before but this last time something went wrong.

Anyway, I remember him writhing and crying in pain for the nurses to come in and turn him. His injury was very high C-2 or 3 but he had feeling down much of his legs and could even move them a little bit at will. He couldn't stand the pain that lying in one position for more than an hour or so caused him. The nurses were trying to "train" him to stay put for 2 hour intervals so it would be easier on his wife when he went home. But I couldn't stand seeing and hearing him in so much pain. So I would get up out of bed and into my chair and go over and reposition him myself. They caught me a few times but screw those nurses. Some of them seemed so heartless and cruel even though they claimed it was "for his own good." Many others would come in early and turn him though.

I hope you're able to start repositioning yourself soon. You must feel trapped when you can't move and need to rely on others for something so seemingly insignificant to able-bodied people as turning over in bed.

Best of luck.

[Bob Clark]

Hi again James,

I just noticed that you're a T-3 and have been this way for a long time. Why do you need help with repositioning yourself? And why do you have nurses coming around checking on you? Do you live in an institution of some sort? And if so, why? If I may be so nosey as to ask!

I'm a T-5 and have no problem whatsoever positioning myself either in my chair or bed. Most low and mid-level quads can do this too. Do you have other medical problems that hinder your movement?

I used to have a grab bar suspended from my ceiling joists by a chain that would help me turn and position myself in bed. I haven't bothered to reinstall it since I moved some 15 years ago but when I start getting older and more feeble I'll probably hook it back up!

Have you tried using an overhead grab bar?

There's nothing better than getting outta this iron maiden of a wheelchair and stretching out on the bed. Ahhhhhhhh.... relief.......

[allis53ca]

......if you have read the replies, its obvious EVERYONE IZ DIFFERENT!!!........you have to find your own comfort zone, no matter what it takes.....no one else can feel what you feel......no one else can make you comfortable

[keps]

Yeah, I feel much more comfortable on the bed too. I'm always comfy there.
If I spend a long time in my wheelchair, my back starts to hurt more. So I end up spending quite a while on the couch, where I can slump and relieve the backache (bed is better for reducing the pain, though).
I also have low blood pressure, and this feels worst when I am upright in my chair, so that's another incentive for me to get out of it!
BTW I am T2 complete, and do find balancing in my chair can be a problem due to no trunk control, but I try to find something to lean on when I'm not wheeling. I also tend to wriggle a lot in my chair, which helps ease the back pain too.

In bed, I don't turn all night, I spend about 6 hours on one side, which I find acceptable, although sometimes I have to move if the shoulder I'm lying on is hurting.

[Chilepepper]

My problem is that I snore and at times rock back and forth in bed if I cannot sleep, so I usually find myself sleeping all by my lonely self and my wife sleeping down stairs LOL Other than that, I think my only problem is I get a sore neck when I wakeup in the morning. Though I think this is because we have a soft bed. We are looking at a memory foam mattress. As for sleeping positions I like sleeping on my sides and stomach but not my back because by the end of the day my ass is somewhat tender, and beside I think the ass sometimes needs a break

Regards

Marty