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    #46
    My395 - you are definitely someone who grew up with it and this has always been your reality. It really is a different experience to have something that you had before taken away.

    Hey, how is the nordic ski weekend with Candace Cable and "JK". I couldn't go after all. I hope you become a convert or at least do both nordic and alpine. Tamarack is such a beautiful track system. Is it hilly? Last time I was there was as an AB over 10 years ago.

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      #47
      Yeah, my gait is def going downhill and the balance is getting worse even though I am a reg at the Y, doing swimming, yoga, ecliptical, bike and weights. It's been almost 6 years since my MVA. The docs said I would start declining and then finally be back in a wheelchair with a bag by my side. They told me like 20-30 years. So, I'm guessing you lose a little each year until you are back at you initial injury level. I told them that THIS SUCKS. HOw do we stop this, he said until there is cure this is what happens.

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        #48
        05survivor
        Wow
        I dont know if we peak out or what
        If they are sayig we have basically no way to stop it
        How long is our cures away from us ?
        Boy this is a heavy thought !!!

        Maybe if we pull together as a huge group we could voice our common views to the right political medical Delegates to get the ball roling .
        Something has to change

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          #49
          live2ride, I'm interested in your experience as I'm an incomplete also. I can't stand and I trudge with a walker using my arms to keep me up. I'm hopeing that the research that is going on will yield somethign for our cause. I use a Nu Step 2+hours /day. I just want to be in the best shape I can in case something happens. To stand or walk would be a miracle for me.What are your fellings about the research today?

          Thanks in advance

          keeping on

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            #50
            As my injury was more to the nerve roots and lumbasacral plexus I don't see that research is really concentrating on that. My understanding is also that the damage to nerve roots and CES is possibly harder to deal with than the SCI itself.

            In terms of research, to my mind the first priortiy should be to restore independence, second on my list would be close between B&B function and pain management, third would be mobility... so I would say for those that can walk, the recover of relatively minor motor function loss would be way down the list. So give me back my B&B and manage pain issues and I can live with the crappy gait issues :-)

            What I don't understand is why motor function should deteriorate - I'm fit, not exactly old (43) and I thought nerve root/SCI should be relatively stable, if not see some recovery.

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              #51
              I can only speak for myself. I have been walking independantly since about 8 months after my MVA. Had another decline period after my thoracic instrument removal because I suffered another SCI from the surgery. From there got preggie and have been diligent on losing weight/maintaning balance posture/strength etc. Lost all the pregnancyh weight, and now have started to have weakness during my episodes of AD during my monthly visitor. Then, starterd noticing getting shakes/losing strength in my "good" leg. Ha ve been having weekly falls since Dec, before only sometimes, like once a month. Had my yearly visit with my neuro and he tells my that it is the natural progression of decline from my injury. So my understanding is that you build up only to lose it as the spinal cord and body naturally decline because of aging. What about this plateau that I hear everyone talking about? Do you reach it and then decline until back at original injury level/point, which for me would mean no feeling/use of waist down? Anyone out there with similar episodes? Different info regardin loss of use as time goes on? I know that I have read about alot of us here gaining function that the docs didn't think would happen. Anyone out there losing? How long before the decline started?

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                #52
                I feel you. I've never felt jealous of an incomplete walker. My mom suffers from Sarcoidosis that attacked her nervous system among other things. She woke up one day much like a quad. She regained some/most hand function, core & walking. Still though, her body was/is a prison. It left his with nerve pain, years of walking and not feeling just left her with charcoat feet & more pain. I take alot from her battles & the struggles of my inc., walking sci friends. I cringe to think of the increased pain & expectations placed upon them/you. I'm inc, recovering from c4 & left at c6/7, no motor below that. I'm also sensory inc. in patches. It is not all good sensations either & they continue to creep in on me. The neuro pain all together increases each month. I remember starting out 4 years ago with only neuro pain in my feet, now I'm covered in it!I also notice a huge increase in neuro pain & spasms with trying to recover or move something & I'm not even having any luck. Just the sheer impact of trying makes you wonder if it's worth continuing if your brain & nerves will just f with you more. Hang in there. I know I envy other peeps with no neuro pain--what a blessing.

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                  #53
                  Originally posted by live2ride View Post
                  In terms of research, to my mind the first priortiy should be to restore independence, second on my list would be close between B&B function and pain management, third would be mobility... so I would say for those that can walk, the recover of relatively minor motor function loss would be way down the list. So give me back my B&B and manage pain issues and I can live with the crappy gait issues :-)

                  Totally agree with you live2ride!
                  Ugh, I've been kissed by a dog!
                  Get some hot water, get some iodine ...
                  -- Lucy VanPelt

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                    #54
                    Agree x2. My priority list would be:
                    1. Pain
                    2. B and B
                    3. Sensation in my feet
                    4. Motor function (mobility)

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                      #55
                      I'm with you all the way arndog, and I also feel your 'pain'.

                      It's like you have the ability to walk, and it feels great to do it, everyones happy to see you up, but little do they know at night you're in major pain, and not entirely muscular or skeletal, for whatever reason I find neuro to be the worst of them all.

                      Today I walked my living room without any devices (see member section for a vid example) and I feel great, my legs feel great, circulation, everything, well, that was around 3pm. its now 6:30pm and I'm starting to feel my legs get stiff. that means im sore, and so that also means when I wake up in the morning, they will feel as if they're in ice. sigh

                      I also feel like Im not a part of the community either, and after 2 visits to a support group I stopped going. Comments from other SCI folks can sometimes not be so encouraging and snide remarks as if 'why are you even here'. *shrugs*

                      Right, because Im able bodied, yup, no bouncy feet, no devices, B and B is perfect, no I dont suffer from SCI neuropains no way *sarcasm*

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                        #56
                        Imight - well said...

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                          #57
                          I happened to venture out of the equipment forum and stumbled upon this thread. I was injured at 17 and, after undergoing the entire quad rehab process, was able to ambulate unlimited distances with just an AFO for over 20 years. Then, I turned 40. I will be 46 in a couple of weeks and I can tell that the aging process is going to be much rougher on me than for an able-bodied person. With each passing year, my gait gets a little worse, the length of time I can stand without back pain gets shorter, and the fatigue worsens. I increasingly find myself having to convince myself to engage in activities that I would have done without hesitation in the past. Nowadays, when I'm outside clearing snow from my driveway and my fingers get cold, they not only lose function, they really, really, hurt like a mother f__ck_r once they start to warm up. It definitely wasn't as bad a few years back.

                          So, I'm growing old with an incomplete SCI and physically, things aren't looking promising. So what? I think the key to making the most out of the future is avoiding things that are going to accelerate the wear & tear that will be inevitable as we confront aging without the neural reserve that the able bodied have to fall back on (Did you know that when therapists manual muscle test somebody, they can not clinically detect weakness until a muscle has only half of its innervation?).

                          My plan? To learn from the experiences of the veterans I work with as I see them get older. In many respects we are going to be learning from each other, and I am going to have to comply with my own recommendations. I must not let others perceptions of disability dictate how I participate in life. For example, rather than exhaust myself getting around work or going to conferences, I invested in a rockin' wheelchair. Most people with my level of function wouldn't have a titanium rigid frame, not would any insurance company be likely to pay for one. So what? Having it makes a huge difference in my quality of life. I am also fortunate to work in an environment where I can easily get assistance from colleagues.

                          As importantly, as I age, I realize I that satisfaction in life comes from relationships I have with those I love and the intrinsic rewards I get when I can successfully help others. Hopefully, every rockin' chair I prescribe which makes a meaningful difference in a veteran's life and every post of mine that helps somebody here will help offset the loss of a couple of thousand additional neurons to keep me going even though things require more-effort.

                          Good thread arndog.

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                            #58
                            Good post SCI OTR, well said.

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                              #59
                              Originally posted by Imight View Post
                              Comments from other SCI folks can sometimes not be so encouraging and snide remarks as if 'why are you even here'. *shrugs*
                              Who the hell said that to you? How incredibly rude of them .. I don't feel the same. I'm sure there are many here that don't feel that way.

                              I watched the video of you walking across your living room floor unassisted ... I held my breath near the end afraid you were going to fall and smack your head on your computer desk .. didn't happen, lol. Whew! It's obvious you've put a lot of work into it!

                              For me, it's nice to see that some recovery is possible for someone and how much you can achieve. To quote someone else here, "Haters gonna hate!"
                              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

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                                #60
                                Good thread. I was just beginning to realize this dilemma for my self. And Arndog just spoke my mind, albeit a bit more eloquently!

                                This time last year I was comfortably numb, happily pushing my walker around Target, catching glances of disbelief from strangers. Now, after a solid year of gait and balance exercising, i'm almost a prisoner to my pain. I can walk a mile with no aid, ride my bike again, but I can't even sit on my butt for more than 15 minutes a day because it hurts so bad. I would definitely take less mobility for less pain.

                                Another facet of the dilemma: Is exercising worth it? For the mind and body it is, but in terms of recovery I'll push my self further and further and think, "Man! All of this exercise is really working! Soon i'll be hiking again. The body truly is an amazing, healing machine." Next thing I know, I can hardly achieve 50% of what I had worked so hard for. I'm not quite ready to throw in the towel, but I am realizing that its not so much what i'm doing therapy wise as it is what my nerves are doing. Not to mention, when we exercise we use up our precious muscle strength for basic everyday task.

                                The only thing I have found of great benefit to my walking and stamina was really focusing on what muscles I am using to walk. I naturally want to use my quads and lean forward to cope for balance. I have found that the more I focus on my using the glute muscles, the farther I can go. Makes sense as these are stronger. Took me months of walking everyday, tweaking every step.


                                To 05Survivor, I'm shocked at your story. I guess its true that our senior days are not going to be as pretty as some, but I cant believe that was your Dr.'s answer to your concerns. Have you had an MRI recently? Did the Dr. not seem concerned? Are you seeing a neurologist or neurosurgeon? Because many surgeons are like that. Mine is, I actually go to Hopkins as well (saw your other post). I try not to address any of my concerns with my surgeon unless hes going to cut me open again.
                                C3/4 Incomplete. Ependymoma tumor, syrinx from C to T.

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