24 replies to this topic

[Lol Hare]

This may have been posted before but i can't find a thread on it,are there many independant living quads out there? ican do most things but its just the morning toilet routine i struggle with,i am starting to learn to use the colorplast irrigation kit on my own as the catheter is easier to insert than the supps i usually have(while on showerchair)
anyone have any living tips they use?

[Ec E Ryda]

I have been on my own for about a year now, but i did need help for the first year after my accident. but it feels better than having to depend on other people to assist you. Once you get everything down it will get easier. The one i had a problem with was transportation because i was taking the bus cuz i have never takin the bus before in my life and having to schedule my time according to the bus schedule, but it got to a point where it was like a routine for me. Now i have my own car and as far as know my life is going in the right direction.

[DaveP]

I've lived independently for years, periodically (ie between girlfriends), and what made it possible is a suppository inserted. I googled and found this link...

http://www.allegrome...er-p192703.html

The more you do, the stronger you get, the better your techniques will become and the more confident you'll get. I've set up and run my own businesses, flown oall over Europe on my own, rented cars with hand controls, etc and am very pleased I pushed myself so hard in the early days. Going on holiday is so much easier and fun, and life has much fewer restrictions.

Think about it like basic training in the Army. The harder it is and the harder the new soldier pushes himself, the better soldier comes out of the other end!

Go for it! Push yourself.

[WildKat]

Lol Hare, on Feb 7 2010, 04:17 AM, said:

This may have been posted before but i can't find a thread on it,are there many independant living quads out there? ican do most things but its just the morning toilet routine i struggle with,i am starting to learn to use the colorplast irrigation kit on my own as the catheter is easier to insert than the supps i usually have(while on showerchair)
anyone have any living tips they use?

I'm a C6 complete and live on my own (well half the time), but I am totally independent. I only live with someone when I'm visiting my boyfriend or he's staying with me. (I'm from Canada and he's from the UK.)

A couple of living tips I can think of are:

1. Make sure you have a can opener you can operate easily on your own! (I have a one touch can opener and it works great. I just lay it on the can and press a button. It does all the work.)

2. Make sure other people know to put things back where they found them so you can always reach them.

3. If you drop little things you can't pick up a pair of tights (panty hose) over a hand held vacuum (or the end of a regular vacuum) will let you easily pick the object up even if it's under the couch. It's amazing what you can find by doing this! It works well when you are doing wheelchair repairs/adjustments and screws roll away.

4. Also try keeping your mobile phone with you (or a cordless phone if your mobile is charging) in case you need help and have to phone someone.

[In The Wind]

I'm a C5/7 Tetra and although I live at home I'm otherwise completely independent. I do have really good hand function for a C5, I do everything myself. From the bowel routine (Enemeez), bathing, dressing, and getting to work, I do it myself.

The only problem I have is with falls, and I seem to go through spells with them. So I recommend a freedom alert,

Freedom Alert

I wear this when noones home. There are no monthly fees and it lets you talk through the pendant, (you can be 300' away from the base unit) and it only dials the numbers you program it too. So it can call one of my other family members or the neighbor if I wish. It has come in handy a couple of times and I'd rather call my brother than 911, though it will certainly call 911 if you want it too...

[Fazer386]

Hey,

Interesting. I'm C5/C6 complete, year-half post from a motorcycle crash. The morning routine is zapping me. I have to have help to get dressed and get up. The rest of the day is fine. I need some help going to bed, but I should have the night routine down soon.

Any suggestions would be appreciated.


thx,
Fazer

[twisted_ophelia]

I am a para but I play rugby for fun with some quad friends and most of them live independently in their own places. They range between C4-C7 complete and if they can do it, most quads at that level can too.

[MrBump]

apart from stickin a finger up my bum and pullin my pants up, i'm independant.
goin in for a tendon transfer for my fingers, hopefully will be 100% then.

[Lol Hare]

I'm lucky that i manage to get back into my chair if i fall with no problem,when going to bed,i always lie on 2 incontinence sheets,it saves messing the bed up if i have a mishap during the night and always leave one on my chair in case i have to get out of bed
I also find having the key on a length of string on the inside of the outside doors helps,you pull the string in with you and easily close the door,my chair is low enough for me to pick things up but heavy things get pushed along the floor or get moved along about 1ft in front of me and i move along the same,king of shunting things along! smooth coathangers too help as you can pull an arm of a sweatshirt etc and it will slide off.I also take Senna/Lactulose in the evening and mix a load together in a large bottle ,but carry a small "sample pot" with me everywhere,like if i go out at night for a meal.talking of inco sheets,i'm often late to bed so put one on my chair when i get into it from the sofa as i've had mishaps before like this and it saves a heck of a lot of work washing your chair!

Edited by Lol Hare, 08 February 2010 - 06:19 AM.

[airart1]

i know 3 good friends right now within 30 miles of me, i've known a few too, that are not with us anymore...........

[allis53ca]

i'm c5 w/o tris or hands and have lived completely solo for about 3.5 years now...i have no assistance of any kind and do fine..in fact i've been living alone in a motorhome for 6 months (tho i don't reccomend it, i'm retarded and thought it was a good idea 6 months ago, i was wrong)...Kat had good suggestions, i employ the same tools and tactics she does...there are many mods and mcgyver's you can implement to make things work for you...the best way to get solutions is to post here what ure struggling with, and see what replies us cripples post as our solutions...then try til you find what works for you

[Izziwhizzi]

twisted_ophelia, on Feb 8 2010, 05:09 AM, said:

I am a para but I play rugby for fun with some quad friends and most of them live independently in their own places. They range between C4-C7 complete and if they can do it, most quads at that level can too.

I'm sorry, please, please, do hot give out false hope to new quads.

There is NO WAY a correctly diagnosed C4 complete look after themselves - they cannot feed themselves, I mean by that lift food or drink into their mouths. Their arms stay on their laps or arm rests. This level CANNOT live and care for themselves without help. Play rugby? a C4 complete quad - come on, whos been fooling who?

A C5 complete? well in the UK, a C5 can hardly reach their mouth let along reach the top of their head - independance? Nope.

Now their has been a vocal "C6 complete" on this forum, who claims total independance. I have watched you tube videos of her swimming and am in total shock. She is able to do stuff that a T4 can't do. She can lift from lower than sitting into her chair, with great stomach muscles that paras do not possess. I bet someones telling porkies somewhere.

Please, its great when someone has significant attributes to make them get a first at Oxford, Cambridge or Harvard, but its not possible for everyone. Did you all get such a degree? I did, even mas a C6. I don't expect so but should I say you all could? What about expecting every AB to run a marathon in sub 3 hours? my 50 year old neighbour did it, so why can't everyone under 50 do it?

So please don't tell us that ALL C4, 5 or 6 completes can live independantly - its rubbish and totally demoralising for them and those who care for them.

Now I have seen butch male C7's do 180 degree transfers, so I know they can have great physical skills, but I bet there are many c7'S and lower who cannot live independantly too. C7's can give it a good go and some do succeed.

Just don't put people down, we all have different skills and be proud of those you have.

I

[Tetracyclone]

I read ongoing confusion over the definitions of complete and incomplete. My guess is that many are diagnosed "complete", as was I, then later develop abilities that show them to be "incomplete". So the diagnosis was wrong and perhaps an embarrassed Doctor failed to correct it. It gets worse when Doctors themselves are unclear on definitions. Wrong diagnoses can trail us through years and many boxes of paperwork.

Some of you medical people can correct me if I am wrong, but if a complete C-4 could play rugby, or even do their BP, then the term has lost its meaning.

Or, take our friend on myscirecovery.com, who was assumed to be complete for several years. Since he is now walking with a walker he is clearly no longer complete. One could argue the original diagnosis was correct and a miracle changed things, but obviously there was change and so he is now "incomplete".

I am suspicious that the medical field is still more ignorant than knowledgeable about SCIs. We lack fool proof diagnostic tools and tests. Reading images has long been as much art as science. What we have are "working definitions", or even "working generalizations".

Edited by Tetracyclone, 08 February 2010 - 10:23 PM.

[WildKat]

Izziwhizzi, on Feb 8 2010, 05:18 PM, said:

Now their has been a vocal "C6 complete" on this forum, who claims total independance. I have watched you tube videos of her swimming and am in total shock. She is able to do stuff that a T4 can't do. She can lift from lower than sitting into her chair, with great stomach muscles that paras do not possess. I bet someones telling porkies somewhere.

Just don't put people down, we all have different skills and be proud of those you have.

Um EXCUSE ME?!!! The videos you are talking about are MINE and I think you should take your own advice and not "put people down, we all have different skills and be proud of those you have." YES I am a C6 complete and have all the medical records etc. to prove it (although I don't see why I should have to do that just because someone else is jealous or whatever you are). I worked freakin hard to get to where I am today and I do NOT appreciate someone who doesn't even KNOW me accusing me of lying!

I also know a couple of people who have a t4 incomplete and t4 complete injury and can do exactly what you said they can't. I get into my chair by facing it and pulling myself up into the seat on my stomach and rolling over until I'm sitting down. It took YEARS of practice and hard work and figuring out techniques that will work by using the muscles I have (NONE of which are in my abdomen).

I suggest you actually ASK someone HOW they do things instead of accusing them of lying next time! You can do a lot when you take the time to figure out how to use what you have and work bloody hard at it.

[Lol Hare]

Quote

I also know a couple of people who have a t4 incomplete and t4 complete injury and can do exactly what you said they can't. I get into my chair by facing it and pulling myself up into the seat on my stomach and rolling over until I'm sitting down. It took YEARS of practice and hard work and figuring out techniques that will work by using the muscles I have (NONE of which are in my abdomen).

I suggest you actually ASK someone HOW they do things instead of accusing them of lying next time! You can do a lot when you take the time to figure out how to use what you have and work bloody hard at it.

Yeah agreed,some of us can do things others can't and we all learn different things and tecniques with what we have left after injury,in hospital i'd heard of going from floor to chair and one Physio showed me 2 or 3 ways she'd seen it done and one i tried seemed like worth carrying on with and sure enough it paid off,so if im alone and have a fall,i can get back up into my chair, and part of the technique i've used for other things like getting into a 4X4 like a Range Rover or Escalade,also i was more surprised when it helped me get out of a swimming pool without assistance I'll

We can all learn from each other and personally,being a C6/7 complete i feel that if i could find a way to do my BP correctly then i could well live independantly,hence the reason for asking,surely it's possible

(Maybe i'll try to film and then post a you tube clip of the floor to chair thing,i'm sure it'd help others )

[WildKat]

Lol Hare, on Feb 9 2010, 02:52 AM, said:

Quote

I also know a couple of people who have a t4 incomplete and t4 complete injury and can do exactly what you said they can't. I get into my chair by facing it and pulling myself up into the seat on my stomach and rolling over until I'm sitting down. It took YEARS of practice and hard work and figuring out techniques that will work by using the muscles I have (NONE of which are in my abdomen).

I suggest you actually ASK someone HOW they do things instead of accusing them of lying next time! You can do a lot when you take the time to figure out how to use what you have and work bloody hard at it.

Yeah agreed,some of us can do things others can't and we all learn different things and tecniques with what we have left after injury,in hospital i'd heard of going from floor to chair and one Physio showed me 2 or 3 ways she'd seen it done and one i tried seemed like worth carrying on with and sure enough it paid off,so if im alone and have a fall,i can get back up into my chair, and part of the technique i've used for other things like getting into a 4X4 like a Range Rover or Escalade,also i was more surprised when it helped me get out of a swimming pool without assistance I'll

We can all learn from each other and personally,being a C6/7 complete i feel that if i could find a way to do my BP correctly then i could well live independantly,hence the reason for asking,surely it's possible

(Maybe i'll try to film and then post a you tube clip of the floor to chair thing,i'm sure it'd help others )

I was shown a couple of different ways in rehab, but never really got the hang of them while there. Once I got out I knew I needed a way to get up from the floor because I lived alone so whenever my friends would come over or I'd go to visit them I would use some of that time to practice. I also kept using the muscles I had to make sure they were as strong as they could be, then after a year (well just under a year actually) I was able to get up from the floor. Although it's not pretty lol it works!

I think making a video is a great idea! I've had so may people send me messages on YouTube asking me how I move a certain way or telling me how much it helped them.

Edited by WildKat, 09 February 2010 - 10:27 AM.

[topperf]

- congratulations with all your achievements, Wildcat! - a pity though that you're not seeing where Izzi is coming from.

[In The Wind]

Izziwhizzi, on Feb 8 2010, 07:48 PM, said:

twisted_ophelia, on Feb 8 2010, 05:09 AM, said:

I am a para but I play rugby for fun with some quad friends and most of them live independently in their own places. They range between C4-C7 complete and if they can do it, most quads at that level can too.

I'm sorry, please, please, do hot give out false hope to new quads.

There is NO WAY a correctly diagnosed C4 complete look after themselves - they cannot feed themselves, I mean by that lift food or drink into their mouths. Their arms stay on their laps or arm rests. This level CANNOT live and care for themselves without help. Play rugby? a C4 complete quad - come on, whos been fooling who?

A C5 complete? well in the UK, a C5 can hardly reach their mouth let along reach the top of their head - independance? Nope.

Now their has been a vocal "C6 complete" on this forum, who claims total independance. I have watched you tube videos of her swimming and am in total shock. She is able to do stuff that a T4 can't do. She can lift from lower than sitting into her chair, with great stomach muscles that paras do not possess. I bet someones telling porkies somewhere.

Please, its great when someone has significant attributes to make them get a first at Oxford, Cambridge or Harvard, but its not possible for everyone. Did you all get such a degree? I did, even mas a C6. I don't expect so but should I say you all could? What about expecting every AB to run a marathon in sub 3 hours? my 50 year old neighbour did it, so why can't everyone under 50 do it?

So please don't tell us that ALL C4, 5 or 6 completes can live independantly - its rubbish and totally demoralising for them and those who care for them.

Now I have seen butch male C7's do 180 degree transfers, so I know they can have great physical skills, but I bet there are many c7'S and lower who cannot live independantly too. C7's can give it a good go and some do succeed.

Just don't put people down, we all have different skills and be proud of those you have.

I

Wow, what a bunch of BS.

We've got a girl in our therapy group, a C5 complete that had been told that her cord was severed and all she would ever do is sit in a chair. and that's all she's done for 13 years. Now with good therapy she's starting to bridge (Hip Flexors) on her own.

I think most of us here know enough to take what the doc's say and flush it down the toilet with the rest of the crap.

Your body is trying to repair itself. Proper, active therapy will do wonders, and I strongly suggest looking at what project walk is doing.

Even if you don't recover the ability to move a single finger, there is no reason you can't live nearly independantly. You might need a lot of help doing some of the things that have to get done but don't ever fall into the sort of limitations expressed above.

[WildKat]

topperf, on Feb 9 2010, 01:02 PM, said:

- congratulations with all your achievements, Wildcat! - a pity though that you're not seeing where Izzi is coming from.

Thanks. I do see where she is coming from, but I just really didn't appreciate what she said about me lying! She never once wrote a comment on any of my videos asking how I did it or anything, then came on here and made sure to say it was an "active member" here whose videos she was talking about.

She went against all of her own advice about how everyone is different and are capable of doing different things and just because one person can do something doesn't mean everyone can to call me a liar and that just rubbed me the wrong way!

I do understand that everyone is different and that one person's abilities may not be another's, but I also know that there are people with my injury level that can probably do more or less than me. I don't go around accusing the people who can do more of lying because I can't do something they do. I congratulate them and ask them if they have any tips so I can try to do whatever it was myself.

[airart1]

every injury is different,remember, but i know alot of quads............know a couple that are not independent..motivation, and survival means alot..........

[M@CHINE]

i'm pretty indepedent still learning though only been injured 2yrs my goal now is to be able to use a manual chair, but i got to get rid of my bak boobs lol

[Kodie]

M@CHINE, on Feb 9 2010, 06:06 PM, said:

i'm pretty indepedent still learning though only been injured 2yrs my goal now is to be able to use a manual chair, but i got to get rid of my bak boobs lol

Haha! Those are my current goals too.

[Izziwhizzi]

In The Wind, on Feb 9 2010, 04:47 PM, said:

I think most of us here know enough to take what the doc's say and flush it down the toilet with the rest of the crap.

Precisely, and as is the too often said comment - I know someone can, so you should be able to do too. Classifications of levels change from country to country (even doctor to doctor), abilities alter from person to person, and as was said earlier completes and incompletes classification can alter too over time.

I didn't mean to upset you WK, but actually, I didn't accuse you.

Just enjoy what you do, achieve what you can in life, but please remember as the good old Life of Brian states 'we are all individuals!'

I

[qbounce]

Izziwhizzi, on Feb 8 2010, 12:48 PM, said:

twisted_ophelia, on Feb 8 2010, 05:09 AM, said:

I am a para but I play rugby for fun with some quad friends and most of them live independently in their own places. They range between C4-C7 complete and if they can do it, most quads at that level can too.

I'm sorry, please, please, do hot give out false hope to new quads.

There is NO WAY a correctly diagnosed C4 complete look after themselves - they cannot feed themselves, I mean by that lift food or drink into their mouths. Their arms stay on their laps or arm rests. This level CANNOT live and care for themselves without help. Play rugby? a C4 complete quad - come on, whos been fooling who?

A C5 complete? well in the UK, a C5 can hardly reach their mouth let along reach the top of their head - independance? Nope.

Now their has been a vocal "C6 complete" on this forum, who claims total independance. I have watched you tube videos of her swimming and am in total shock. She is able to do stuff that a T4 can't do. She can lift from lower than sitting into her chair, with great stomach muscles that paras do not possess. I bet someones telling porkies somewhere.

Please, its great when someone has significant attributes to make them get a first at Oxford, Cambridge or Harvard, but its not possible for everyone. Did you all get such a degree? I did, even mas a C6. I don't expect so but should I say you all could? What about expecting every AB to run a marathon in sub 3 hours? my 50 year old neighbour did it, so why can't everyone under 50 do it?

So please don't tell us that ALL C4, 5 or 6 completes can live independantly - its rubbish and totally demoralising for them and those who care for them.

Now I have seen butch male C7's do 180 degree transfers, so I know they can have great physical skills, but I bet there are many c7'S and lower who cannot live independantly too. C7's can give it a good go and some do succeed.

Just don't put people down, we all have different skills and be proud of those you have.

I

Living on your own doesn't necessarily mean that your completely independent. It could mean that you require minimal assistance too.

Many quads live on their own from C5-7 who only require the smallest amount of care per day. Twisted Ophelia may not have stated her words in detail when she said most quads can live independently . . . . . . but they CAN, with limited assistance. And then, the assistance varies from person to person, injury to injury.

Lets not bust balls over wording symantics. Most can enjoy a full life in their own dwelling either way.

Edited by qbounce, 09 February 2010 - 09:38 PM.

[SirRamIII]

Hey guys, just looking for some tips on changing from my day bag to night bag. I can remove the day bag from the condom catheter but haven't figured out how I can get the condom onto the night bag.