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    A question for the community

    My goal,my quest is to be independent, I watch instructional videos, I've spent tens of thousands of dollars on physiotherapy, pursue experimental treatments, and keep myself up at night thinking of what I need to be doing what I'm doing wrong etc. this is an obsession for me. I've seen people in my injuryMove as if they were paraplegics,i've seen others that can barely move their arms. Dependency is the ultimate disgrace that is what is motivated since day one, it's also why I begged to be left in that swamp. After so much effort and so much money spent true independence for myself will require return of function. Thought when I first joined this place I was attacked constantly told I was making excuses, that I wasn't doing what I could Be doing. Assumptions were made, I was hearing this was the same time the physiotherapist well I was in rehab wouldn't try anything like transfers because I "l lacked the function" The words that were said to me on here motivated me to try harder, Find better physiotherapy spend a lot more money, they also really fucked with my head when I wasn't getting anywhere... Anyways I'm here to get the communities consensus on the matter. Either way I'm still going to pursue Independence, it'd be shameful if I didnt. C1-Lumbar section completes incompletes Abs please give your votes, share your explanation or opinion if you wish.
    25
    Yes as long as they work hard enough, they should be able to do these tasks at that level
    4.00%
    1
    No every injury is different, even at the same level
    84.00%
    21
    A C-5 C6 even complete should be able to drive and Cath themselves
    8.00%
    2
    Most incompletes should be able to with rehab
    4.00%
    1
    Last edited by JamesMcM; 12 Dec 2015, 5:41 PM.

    #2
    I'm assuming your level of injury is C5-6 complete? What month and year were you injured?

    From the very beginning I listened to what others had to say about what they thought was best for me. And then I tossed 95% of their opinion in the trash where it belongs.

    Do whatever you think is best for you. If I listened to other people, I'd probably be dead by now. You can do this, you can do that. You won't be able to do this, you won't be able to do that. Coming from people that often prove themselves to be full of bs.

    I'll wait to see your injury date before I comment further.

    Comment


      #3
      I have not made a poll selection. Functionality depends on a lot more than injury level and I did not approach my peak until 15-20 years after my injury. For instance when I was in rehab there were two C5,6 quads who had been jockeys. They probably did not weigh more than 80 lbs. and had been real athletes. I am a 6'1" C7 quad and they could whip my ass at just about anything. Transferring, rolling, etc. were so much easier for them because they did not have the weight to contend with. I could run circles around mid-level paras who were obese. So body type can have a significant impact on functionality. The reason it took me that long to peak is because learning body mechanics and applying laws of physics like leverage can be used to compensate for limited strength. It takes time to learn these things. Also, once I fully understood what my muscles could and could not do I was able to develop aids that helped to extend their capability. It also takes patience and practice, practice, and that takes time. It also took about 15 years for my body to adjust to the point that I had plenty of energy or stamina and in sum, to feel good again. On top of that it took at least 10 years for me to get my head together so I could take advantage of everything I had going for me. I understand your impatience, but in my experience there are some things that take time. The really frustrating thing is not knowing what the future holds.
      You will find a guide to preserving shoulder function @
      http://www.rstce.pitt.edu/RSTCE_Reso...imb_Injury.pdf

      See my personal webpage @
      http://cccforum55.freehostia.com/

      Comment


        #4
        Originally posted by JamesMcM View Post
        My goal,my quest is to be independent, I watch instructional videos, I've spent tens of thousands of dollars on physiotherapy, pursue experimental treatments, and keep myself up at night thinking of what I need to be doing what I'm doing wrong etc. this is an obsession for me. I've seen people in my injuryMove as if they were paraplegics,i've seen others that can barely move their arms. Dependency is the ultimate disgrace that is what is motivated since day one, it's also why I begged to be left in that swamp. After so much effort and so much money spent true independence for myself will require return of function. Thought when I first joined this place I was attacked constantly told I was making excuses, that I wasn't doing what I could Be doing. Assumptions were made, I was hearing this was the same time the physiotherapist well I was in rehab wouldn't try anything like transfers because I "l lacked the function" The words that were said to me on here motivated me to try harder, Find better physiotherapy spend a lot more money, they also really fucked with my head when I wasn't getting anywhere... Anyways I'm here to get the communities consensus on the matter. Either way I'm still going to pursue Independence, it'd be shameful if I didnt. C1-Lumbar section completes incompletes Abs please give your votes, share your explanation or opinion if you wish.
        telling people what they "should" or "shouldn't" be able to do is a bad idea, in my opinion. you have to do as much for yourself as you possibly can so that you can feel good about yourself, but if you absolutely can't do something, you can't be ashamed either. i think the only shame is in not trying. it sounds cliche, but by not trying because you're afraid (not you individually, you collectively) of failing, you've already failed. hopefully in any attempt to do something, you learn from it even if you fail. and at least you can say you tried.

        it's easy to make excuses but that runs rampant in our society, it isn't limited to people with SCI. a lot of society is more than willing to give you pity or make excuses for you not doing something, so that trap has to be avoided. try not to ask people what they think too often. decide for yourself what you want to do and what will make you happy and then try. if it works, wonderful. if it doesn't, try something else.

        Comment


          #5
          Rehab sure has changed. 30yrs ago there was a list be each patient's bed and you would tick them off as achieved:

          Feed self
          Brush teeth
          Dress self
          Get in out of bed by self, etc

          Like military barracks ... quad and para.

          Have you thought about seeking better care and rehab in the US? If you can prove that you're not getting what you need here, OHIP will pay for your stay in the US. Like Rehab Institute of Detroit?
          Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

          T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

          Comment


            #6
            Originally posted by lynnifer View Post
            Rehab sure has changed. 30yrs ago there was a list be each patient's bed and you would tick them off as achieved:

            Feed self
            Brush teeth
            Dress self
            Get in out of bed by self, etc

            Like military barracks ... quad and para.

            Have you thought about seeking better care and rehab in the US? If you can prove that you're not getting what you need here, OHIP will pay for your stay in the US. Like Rehab Institute of Detroit?
            right?! i was at Craig Hospital in 1980 and it felt like it was run like a boot camp. i remember thinking it was a little harsh at the time, but it has served me well over the years. i am dumbfounded at the way rehab is run there now. it's nothing like it used to be. you can lie in bed all day with the drapes drawn, turn down all your classes and pitch a constant fit for pain meds. i think eventually you get sent home for that, but not right away, and it's only cheating oneself to behave like that. none of us signed on for SCI, but the world can be a cruel place sometimes. my attitude is figure out how to deal with circumstances the best way possible and move on so i can get on with my life.

            Comment


              #7
              My doctor was bitching during my last at the current state of rehab. He was saying he often fielded phone calls from insurance companies as soon as two weeks after injury. They are, of course, looking to save money.
              Tom

              "Blessed are the pessimists, for they hath made backups." Exasperated 20:12

              Comment


                #8
                its all unique to 1 self I am as independent as I can be that said there are thing I choose to have done so I have a better quality of life I am also 65 YOUNG

                Comment


                  #9
                  Asked my friend today who is C5-6. She's completely paralyzed from the chest down but gets spasms, especially on the left leg. She can't dress herself completely ... is able to operate her suprapubic (after 25yrs she had to have a new one placed and wears a bag now). Drive with a ramp and hand-controlled van (she took me to an appointment today!). Get in or out of bed via a transfer board as long as someone is there to place and remove the board. Her fingers are atrophied closed, but she had a tendon transfer to acquire a pinch which changed her life for the better (fore-finger and thumb). She was able to hand me a drink today from the drive-thru window and I was behind her so she is able to grasp that flimsy drink hard enough not to drop it.

                  Canada gives you enough to send you home. The US seems to want to maximize your potential. I had looked into going stateside years ago for a non-healing wound. You'll need to acquire a form from your local MPP. I'm told the entire process takes about 8 weeks to go through OHIP (Ontario insurance) for approval. If you feel, James, that you have more potential ... maybe follow this up? Getting a decision from OHIP doesn't mean you have to go and it doesn't hurt to try. The tough part will be convincing the powers that be, that you're not getting what you need from Toronto.
                  Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

                  T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

                  Comment


                    #10
                    I too was at Craig right after my accident 1975, I was getting out of bed with halo after the first week for an hour or so. The up time increased along with daily living chores so you could figure out what you could or couldn't do on your own. A little later you could spend the weekend with wife/family member in apartments across the street to see how you could get through the day with no or little help. This was the motivation I needed to achieve total independence. If you over do it, you will stress yourself out both physically and mentally.
                    Originally posted by absinthia darkbloom View Post
                    right?! i was at Craig Hospital in 1980 and it felt like it was run like a boot camp. i remember thinking it was a little harsh at the time, but it has served me well over the years. i am dumbfounded at the way rehab is run there now. it's nothing like it used to be. you can lie in bed all day with the drapes drawn, turn down all your classes and pitch a constant fit for pain meds. i think eventually you get sent home for that, but not right away, and it's only cheating oneself to behave like that. none of us signed on for SCI, but the world can be a cruel place sometimes. my attitude is figure out how to deal with circumstances the best way possible and move on so i can get on with my life.

                    Comment


                      #11
                      I selected No every injury is different, even at the same level but I think that for a complete C5 to cath all by himself is kind of a mission impossible, at least in my case. And I also think incompletes should be able to do it in most cases especially Asia C.

                      Comment


                        #12
                        I'm a C6 and until this past June I didn't think I could do IC by myself either. In June I went to Craig to see a urologist for a checkup. I had switched from a SP to condom caths about 5 years ago so I was just having things looked at after having recurring UTIs over the past year. While there one of their nurses suggested I IC once or twice daily to be sure my bladder would be emptied completely at least once a day. I told her I wouldn't be able to since I live alone, would have to do it myself, have no use of my fingers and didn't want to risk contamination. She encouraged me to try the touchless closed system type and gave me some samples, including these Hollister VaPro -https://www.hollisterpeoplefirst.com/Watch?f=PR922225 although I got the full size like this http://secure.hmepowerweb.com/Resour...e41a82efa5.jpg

                        I never heard of the touchless kind and was really surprised at how easy they are to use. These may be an option for other C6, C5s - they're at least worth trying. Unfortunately my insurance won't pay for them, but now I knew I could do it so I use standard ICs twice daily and just clean and reuse them.
                        Last edited by tumbleweeds; 16 Dec 2015, 10:27 PM. Reason: added link

                        Comment


                          #13
                          I'm C5 complete. When I'm up in my chair IC is easy. I wash my own catheters as well. It all just takes practice.

                          I allowed my hands to contract into fists. I can grab and manipulate what I need.

                          I use a bag at night so I can get some sleep.

                          Everyone is different. It's all trial and error. Just giving it a mention to give ideas.

                          Comment


                            #14
                            My friend couldn't get in/out of bed with a transfer board for her first ten years either ... she relied on a hoyer lift.
                            Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

                            T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

                            Comment


                              #15
                              There's this video on YouTube of a man claiming he's C5 complete
                              http://youtu.be/2CN6p3nTvaw

                              Comment

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