38 replies to this topic

[sciiaf]

I’m a T9 complete para. I was injured in June and spent a couple months in rehab. I moved back home in August and since then I have been living in my own apartment close by family (they’re my caretakers).

Because of my level of injury I’m lucky to live on my own (with help in bathing/bowel program) but what I’m wondering is how long did it take you all to really get back to an independent lifestyle? When were you able to return to full/part time work? Drive a car? Did you ever manage to be able to bath/bowel program on your own? I’m grateful for having my family nearby but I’m also reluctant to rely on them for everything. Just trying to get a timeline of when I can expect (or hope) to get back to an independent life.

[Ratticis]

Still waiting, but I'll let you know.

Of course, for the more philosophical answer, nobody is ever truly independent. We all need someone else. No man is an island, with the exception of that one guy who was lost at sea and his body bloated up so big that a tribe of canables lived on his back . . . Then ate him . . . Then they all drowned.

[Stickman]

sciiaf, on Mar 4 2010, 12:39 AM, said:

I’m a T9 complete para. I was injured in June and spent a couple months in rehab. I moved back home in August and since then I have been living in my own apartment close by family (they’re my caretakers).

Because of my level of injury I’m lucky to live on my own (with help in bathing/bowel program) but what I’m wondering is how long did it take you all to really get back to an independent lifestyle? When were you able to return to full/part time work? Drive a car? Did you ever manage to be able to bath/bowel program on your own? I’m grateful for having my family nearby but I’m also reluctant to rely on them for everything. Just trying to get a timeline of when I can expect (or hope) to get back to an independent life.

Im a t8 and am able to do everything except get in the tub myself to take a shower, so i need assistance there. It was a gradual thing with me, I dont think theres a set timeline, its up to you and how fast you get used to things being different. As time went on, i got more tired of bugging everyone for things or help with something, so Im always motivated to keep climbing that ladder of independence. It's been 3.5 years for me, but it could of been alot sooner if i had been more motivated. Family is great to have close, but dont let them do too much for you if u can help it.
Good luck

[chris135]

hey sciiaf- as was said we're all on our own timeline. for me i spent longer in rehab cause i didnt have a place to go. i lived with my gf and there were stairs to our apt. so i spent 1 month in the hospital and 4 in rehab. But when i got home i was fairly independent i suppose. I shower/bath myself, do my own bowl regiment, i can cook although we eat out alot lol. The biggest thing is cleaing, my gf does that(minus the dishes). i'm lazy and cleaning was never a favourite of mine. As for driving i got back behind the wheel about 3 weeks ago now but am required to take a road test by the end of next month. and for work i'll be returning in april. Although i'm not sure if i'm 100% ready yet as i'm still in a lot of day to day pain. but i'm thinking thats probably just life. i mentioned in your other thread that you could message me if you have any questions or need to talk.
Chris

[chop-02]

HI Well dude. Like has all ready been said it is all up to you..My accident was June 2007.
I am 99% independent. I do everything on my own. I even ride the bike that put me in this chair..Ya no shit. So if you ever want to talk or ask a question get a hold of me..Hang in there.DON"T GIVE UP..
It will get better..Some days you might not think so but it will...Good luck
CHOP

[allis53ca]

everybodys diff...took me couple years to roll solo, but i live solitarily now with no outside assistance of any kind..it can be done, but not by everybody..you need to go at your pace and not compare your progess to others..we are all diff in injury and ability

[S&W Winger]

Hey sciiaf! Like Ratticis, "Still waiting!"

AND you're doing A LOT better than I am! My accident was 01/31/09, and after six months in hospitals and rehabs, I'm in my own home but due to the injuries to my arms, I can't even do my own bowel program! ...nor transfer...but, like chop-02, I'm a rider, and have every intention of riding again (was on my Gold Wing when a cow blocked the way)...sure, it'll be sometime down the road, but I didn't go through all this not to LIVE LIFE!! (even if I have to use my Hoyer lift to get on the bike, I will ride!) ...was evaluated for hand controls, so will be driving my van soon...

Point being, as the others have stated: we're all on our own timelines...AND again, as noted, motivation means more than what MD's may say...as I was not only "supposed to be dead" (and was dead), I was also "supposed" to vegetate in a nursing home IF I survived...but here I am, back in my own home, albeit, with A LOT more help than I imagined when I first learned I was paralysed and feeling like, and actually being, a huge burden to my family plus the humiliation of CNA help...originally, I had delusions of full and immediate independence...then heard of THEIR thoughts...got through that slump, and already, through self-motiviaton and external encouragement from family and friends (read: NOT MEDICAL PROGNOSIS), have progressed beyond...now to steel myself for more battle...

So, set realistic, achievable short-term goals and have longer-term idealisations to materialize....motivate yourself...surround yourself with positive people...and go for it, whatever your "it" may be or turn out to be...you have my best wishes and encouragement!

Edited by S&W Winger, 04 March 2010 - 05:40 PM.

[Skrads]

I had my accident in March 2008 (2 years ago on the 16th) and spent 3 months in hospital and 4 in rehab. Im a T12 and was back at work part time 2 weeks after leaving rehab, was driving 3 months after and have done my bowel and shower care by myself since leaving. At the start of this year I was back at work full time.

I still live at home with my parents but I am 99.9% independent, I only ever get help or ask for it with its something I definaitely can't do myself (lifting heavy objects, getting stuff from a high shelf etc). I have been forced to do things by myself since I was in rehab. I found out that my friends and family made a deal not to help me if its something I could do myself. If I ever asked for something, they would all stand back and do nothing. I know it sounds bad but it was the best thing they could do. I learnt to do things myself, and they learnt about what I could and couldn't do by watching me. It helped me gain strength and work out techniques for doing certain tasks.

[nitrosport_5]

bradgrove, on Mar 4 2010, 09:12 PM, said:

If I ever asked for something, they would all stand back and do nothing. I know it sounds bad but it was the best thing they could do. I learnt to do things myself, and they learnt about what I could and couldn't do by watching me. It helped me gain strength and work out techniques for doing certain tasks.

My Dad was the same way, for the most part he made me do everything on my own and i really thank him for that. I think about a year after leaving rehab i was doing everything myself with use of transfer board occasionally(i was young and weak .. about 14y/o) but now i am to the point where i am transferring without the board and driving every day. I get in and out of my pickup 4-5 times a day going to and from class. I really owe it to my Dad for me being as independent as i am. I don't have to get help with anything other than if something is out of reach, and half of the time it takes a resourceful mind and i can find an object to reach and knock things down myself

[Ches]

Like alli said, dont get caught up comparing yourself to others, it will drive you crazy!
At 6-7 months I was starting to wing myself of help, and learning the basics all over again. I would say it was at 10 months or so that I could safely (although still nervous) do the scarier of transfers like the shower, toilet, car,etc.. without needing my cellphone in reach or having someone around incase it went bad.
3 years later Im completely capable of doing most anything on my own but I still have my faults.. like steps and wheelies... but like again like alli said dont compare yourself to others, just do what you can when you can.

[In The Wind]

I think the biggest thing is getting your shower/bathroom accessible. I'm 100% independant but without a roll-in bath it would be much more difficult..

[Denny]

You have the right attitude, keep it up. You will be independent at your own time. Set yourself small goals, achieving each goal will improve you independence. You have already overcome psychological barrier and decided to be independent, that is a big step towards independence.

I am T4 and live fairly independent life. I work full time, drives 70mile a day (to and from work) able to take care of most of my needs, shower my self on shower seat across the bath, and my wife helps when ever needed. 6 years since my injury am I fully independent? answer is no, I am learning to do new things almost every day, and improving the range of things I can do. For some tasks even if you can do, it is better to let others help you, that does not make you not independent, even able body people need help now and then.

[chickadee]

I have a much lower injury than you, but after 3 months of rehab/hospital, I was back at it within 9 months. I think the biggest reason for this is because my family lives pretty far away from me. Also, I was very physically fit before my injury, which helped out things considerably (arm strength, etc). Having said that, the big hindrances for me were the amount of medications I was on, the pain, and spasms.

I'm a year and two months out, and was back to work almost precisely on my one year anniversary. For my actual anniversary, I took a trip to The Netherlands and to Rome. Both of these things were just nuts - if I were to do it again, I'd say I wasn't quite ready for either. I only travelled with my sister or Mom after my injury, so it was pretty stressful and wiped me out, but I planned ahead for that. Work is still kicking my ass, but in a good way. I'm so happy to be around other folks again, and the level of my mental work helps distract me from pain, spasms, and so forth. Driving (outside of my small St. Paul neighborhood) didn't happen for about 4-5 months after getting out of rehab.

I have a housekeeper come once a week, and a snow/lawn dude when it's necessary. They make all the difference - especially the housekeeper, as doing laundry is still pretty well beyond me. However, I try to do the other things around my house that I think make a difference. I also barter/swap services or goods for help. For instance, I sold my old pickup truck to a skaterdude-type, and he helped me with the ice dams on my roof and some Super Target runs. Another friend helped me with moving some furniture around my house in exchange for me working on some graphics on his website. Generally, though, the fact that I'm so stubbornly independent, plus have a 'lifehacker-esque' brain, means I'm doing most of my stuff alone and as best as I can. If you give it a good, concentrated shot at doing something in particular, then that should be a good rule to follow. Good luck!

Edited by chickadee, 06 March 2010 - 05:04 AM.

[Ratticis]

But Sara, didn't stubborness contribute to your gimpdom in the 1st place ... Or perhaps 2nd place.
It did for me

[ems]

I think the word independant is a subjective one, knowing your limitations etc.. as well as your minds limitations. When i was first injured I used to say *cant* but it actually meant *wont* until I pushed myself to find a away to do things. Now my word is . *how*

[gordonr]

sciiaf, on Mar 4 2010, 05:39 AM, said:

Because of my level of injury I’m lucky to live on my own (with help in bathing/bowel program)

Dear Sciiaf,

I think it is great that you are reaching out in these threads.

As a low level para you are going to be just fine (if you want).

Detail for us where the problems reside with your bathing and toilet routines.

Is it the transfers? Or what?

I am one hundred percent sure that any errors with your equipment or technique will be recognized by those reading here. Solutions will be found.

I would say PM me, but then you would have only my experience. You need eveybody.

So... To take it from the top:

EXACTLY how do you do these things, and where do you come up short?

Best Regards,

Gordon

[Wheelsonfire]

This is the very reason I bailed from this forum.....WTF, a T9 who can't be self sufficient..../good god,,,,,tut tut.....give me a break.... take your head out of mammies cleavage and say no,I can do it myself......agghhhh why bother!!!!!!!

[Ches]

OMFG Wheelsonfire, he's been hurt all of 9 months.. and hes trying to get there. Back off.
I dont care what your injury is, getting an sci is like becoming an infant all over again.. you have to relearn everything AT YOUR OWN PACE.

[Wheelsonfire]

Nope......Disagree........As soon as a para can sit up the road to independence starts,,,,,,,,,Been diagnosed with SCI is a hard tablet to swallow, my opinion,you can ly back and cry like a baby or dust yourself off and get on with it, In Ireland,,,,average stay of a para in rehab, 4-6 months,,,,,,,independent well before leaving the rehab........no time for pussy footing around, he should be given a kick in the ass to get him to get a move on.......cruel to be kind,,,,,it works and will stand to him.

[Tetracyclone]

Wheelsonfire, on Mar 11 2010, 12:10 PM, said:

Nope......Disagree........As soon as a para can sit up the road to independence starts,,,,,,,,,Been diagnosed with SCI is a hard tablet to swallow, my opinion,you can ly back and cry like a baby or dust yourself off and get on with it, In Ireland,,,,average stay of a para in rehab, 4-6 months,,,,,,,independent well before leaving the rehab........no time for pussy footing around, he should be given a kick in the ass to get him to get a move on.......cruel to be kind,,,,,it works and will stand to him.

WheelsOn Fire- your little moving graphic is just so perfectly you.

[Wheelsonfire]

Tetracyclone, on Mar 11 2010, 05:23 PM, said:

Wheelsonfire, on Mar 11 2010, 12:10 PM, said:

Nope......Disagree........As soon as a para can sit up the road to independence starts,,,,,,,,,Been diagnosed with SCI is a hard tablet to swallow, my opinion,you can ly back and cry like a baby or dust yourself off and get on with it, In Ireland,,,,average stay of a para in rehab, 4-6 months,,,,,,,independent well before leaving the rehab........no time for pussy footing around, he should be given a kick in the ass to get him to get a move on.......cruel to be kind,,,,,it works and will stand to him.

WheelsOn Fire- your little moving graphic is just so perfectly you.

And your point is?

......Better now that there is a familiar face?

Edited by Wheelsonfire, 11 March 2010 - 05:59 PM.

[LeahC]

I sort of agree with WheelsOnFire, I came out of rehab after 6 months able to do everything myself and my car arrived a month later. If people keep doing things for you then you will never become independant.

[Wheelsonfire]

LeahC, on Mar 12 2010, 12:00 AM, said:

I sort of agree with WheelsOnFire, I came out of rehab after 6 months able to do everything myself and my car arrived a month later. If people keep doing things for you then you will never become independant.

OMG Leah don't say you are in agreement with me,,,,,,, you'll be reprimanded and given a spanking.............. Haven't you learnt yet they prefer to walk on egg shells here when it comes to given someone a boot in the ass when it's needed, to get a newbie to the chair to do something without given him/her a medal is not the done thing.

It's all about "Taking things at your own pace". "We are all different"....................YAWN!!!!!!
I got one word that will sum up my feelings in relation to pace.........BALLS.

Edited by Apparelyzed, 16 July 2010 - 11:14 AM.

[LeahC]

I think you came across a bit harsh in your message but it made sense, there are a few 'victims' on these boards who just won't help themselves and the other members fall over themselves to go 'there there'. This is just what I see, it's not an attack, I don't wish to upset anyone.

[allis53ca]

ems, on Mar 6 2010, 11:35 AM, said:

I think the word independant is a subjective one, knowing your limitations etc.. as well as your minds limitations. When i was first injured I used to say *cant* but it actually meant *wont* until I pushed myself to find a away to do things. Now my word is . *how*

this was also my evolution post injury, and i now roll "HOW"

[Ches]

Wheels stop looking for an argument.

If you read as much as you wrote you might have realized the original poster was from the U.S. and since you are such a smarty pants I can only assume you do realize that we arent given 4-6 months inpatient therapy. Not even close. We are lucky to get 4-6 hours a week. Not to mention, the lower the injury the less therapy you will most likely receive.

But I'm sure you know all this. And Im sure you realize its completely different for us in the U.S. No worries

[Texaswheelz]

I had 3 weeks in the hospital and a month in a half of rehab where they taught me to be dependent on my parents (I was 16 at the time) and they actually told me of some cool nursing home type places that I might want to move in after I turned 18 and didn't want help from my parents any more.

So while I understand where you are coming from Wheels, it's not the same for everyone. After I got out of rehab, I had to teach myself how to be independent, where as you said you spent 6 months there being taught it. Our insurance wants you out and on your own as soon as possible, even if the over all cost in the long run is more because they are paying for care of some sort when it's not needed. So as others have said, it is completely

It took me about 8 months to realize that those people at the rehab were blowing smoke up my ass and about 2 more months to be completely independent. At 10 months I got a new car and started driving and that is when you truly realize how independent you can be. I think the biggest hurdle I had was unlearning what Rehab taught me and learning what and how things could actually be done. There is not one thing that I did 12 months after rehab that I actually learned in rehab. From transfers, to getting dressed(which they said I'd never be able to do on my own) to bladder and bowel routines.

My advice is to push yourself and learn new ways that make more sense and are easier then what you are taught and you'll get there much sooner. I've worked with several newly injured people and their return to independence varies as others have said. I can promise you I don't ass kiss, but kick their ass, but some people just aren't mentally willing to accept what they can and can't do now.

[Texaswheelz]

Wheelsonfire, on Mar 11 2010, 10:53 AM, said:

This is the very reason I bailed from this forum.....WTF, a T9 who can't be self sufficient..../good god,,,,,tut tut.....give me a break.... take your head out of mammies cleavage and say no,I can do it myself......agghhhh why bother!!!!!!!

Who/when/where said they couldn't be self sufficient. It's been less then a year and asking when others were and were they should at after 9-10 months into it. As a T-9 he should be able to be completely self sufficient. But you can't say that everyone adapts at the same speed. Some people only injure the spine, some have other injuries that prevent them from doing much until that heals. A recent girl I talked to had to spend 4 months waiting on her shoulder to heal before they would even let her into rehab or try to push herself, the last thing they wanted was for her to be stuck with a bad shoulder that she would have problems with the rest of her life while pushing around a chair. By your equation she then should have been ready to go after 2 months of rehab as you were 6 months post injury.

[Wheelsonfire]

My posts were not to induce argument (although I was in a bitch of a mood yesterday,I think someone has been mixing roids in my supplements).....Sorry!!

I learnt the hard way, I entered rehab with the use of one arm and still on life support via my trachea tube, I worked like a bitch to gain my independence, it didn't take six months either, I seen the lads in rehab who had family running around after their every whim..........I meet them today and they are still running around after their every whim, if we are to be all we can be, niceties can be kept for a later date .......A kick in the ass to a SCI is better in my view, we all need it from time to time.

For a country(USA) who are deemed to be a super power, your health service sucks, your government hasn't a clue and is lead by ignorance(no change from the last dictator ye had), and the way your country is heading, even the Iraqi's will have a better health service than the states... Shame on your government.

Nursing homes = place to curl up and die (well here they are)

PS; Texas the initial poster is obviously not self sufficient as a T9.
Leah, it's nice from time to time to upset people, there's fun to be had.
Ches, yep, I knew all that

Edited by Wheelsonfire, 12 March 2010 - 10:20 AM.

[Denny]

Here is story my fried forwarded to me long back. I found it very true specially after spinal injury.

Lessons from a Butterfly
A man found the cocoon of a butterfly. One day a small opening appeared in the cocoon; the man sat and watched the butterfly for several hours as it struggled to force its body through that little hole. Then it seemed to stop making any progress. It appeared as if the butterfly had gotten as far as it could, and it just could not go any further.

So the man decided to help the butterfly. He took a pair of scissors and snipped off the remaining bit of the cocoon. The butterfly then emerged easily, but it had a swollen body and small, shriveled wings. The man continued to watch the butterfly. He expected that, at any moment, the wings would enlarge and expand to be able to support the body, which would contract in time. Neither happened! In fact, the butterfly spent the rest of its life crawling around with a swollen body and shriveled wings, and it was never able to fly.

What the man in his kindness and haste didn’t understand was that the restricting cocoon, and the struggle required for the butterfly to get through the tiny opening, were nature’s way of forcing fluid from the body of the butterfly into its wings, so that it would be ready for flight once it achieved it’s freedom from the cocoon.

Sometimes struggles are exactly what we need in our life. If nature allowed us to go through life without any obstacles, it would cripple us. We would not be as strong as we could have been, and we would never fly.

Author unknown.

Edited by Denny, 12 March 2010 - 12:14 PM.