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  • 20+ Years Post

    For quads or paras: Just interested in what you've given up after twenty year of paralysis and for what reason, whether it would be a job or a certain way of doing things.

    For example, after a shoulder injury this past Christmas, I went back to my ole' transfer board from rehab to get out of the car with. I thought I would go back to the old way - but now I think why? Too much extra strain on my shoulders.

    You?
    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

  • #2
    I gave up pushing a manual fulltime. (Sorry fujentips) I was working out in a rural area with no sidewalks and getting stuck in potatoe fields.
    Get involved in politics as if your life depended on it, because it does. -- Justin Dart

    I shall not tolerate ignorance or hate speech on this site.

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    • #3
      I only went swimming once this summer. Too painful to get up off the deck into a lounge chair and from there get into the wheelchair.

      I have given up FES. I'm hoping my legs will shrink. I plan to return to it after fixing my shoulders.

      I gave up riding my handcycle this season.

      I'm thinking about getting a sliding board. Wondering if it would make getting out of my car less painful.

      I'm hoping I can go back to where I was a few years ago. So I start rehab on Monday. Maybe HGH injections or hyaluronic acid..... I dunno. Gotta do something.
      ~See you at the CareCure-used-to-be-paralyzed Reunion ~

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      • #4
        I'm 23 years post SCI...the last two years showed me that....

        a lot of our body parts like to wear out at about the same time....I am a t12 incomplete and was very independent, painfree and well adjusted for 23 years (using a manual chair) when the following all quickly started to happen:

        *developed Central Pain which flared into out of control pain whenever I sat for 5 minutes or more. It could only be slightly relieved by laying down. I had to resign from my awesome job at a university. Get on Social Security (been off since 1985) and become very dependent on my husband (because it has turned into my becoming bedridden for the last two years).

        *Had my first bone density test and found out my hips are already osteoporosic (sp?) at -3. Extra caution not to fall now means I have to use my brakes for the first time forever. I've been looking into a transfer board.

        *put on weight because of amitriptyline and "bedrest." None of my clothes fit It is very hard to learn how to safely move my body around at a weight I have never weighed before. It's probably no more than 25-30lbs but it feels very different (and now I need a wider wheelchair for the first time ever).

        *Tranferring with all the above issues has thrashed my shoulders, elbows and wrists. It's made me alot grumpier when the weather changes.

        I had read a longitudinal research article somewhere that studied the aging patterns that SCI's have. They talked about how it takes 2-3 years to adjust after the injury...a run of 20 years of great and/or stable health and at that point we started to wear out and have a large increase of health issues. Has anyone else ever hear of this research? What do you think? Is this true in your experience?

        tocker

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        • #5
          20+ yrs,wow..Im at 7 and i cant even mentally picture myself in another 13yrs..

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          • #6
            I've given up cars for rampvans.

            I've also stopped pushing myself so much. For example, I used to push myself to the grocery store which is a good 10 blocks away. Now, instead of pushing myself, I drive there. I used to push myself to the park which is only three blocks away, but since it involves a hill, I've been driving over the past few years.

            I get flu shots now.

            What bothers me the most though, is that I worry so much more than I used to. I really didn't have any problems the first 20+ years. Now, my shoulders and wrists kinda hurt, I worry about falling because of severe osteoporsis, I worry about pressure sores...

            I wonder what life will be like 20 years from now. I'll only be 55, but I can't imagine what my body will be like then.

            I feel very pessimistic about my future health, and honestly, I don't think I'll even still be alive in 20 years from now.

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            • #7
              The fatigue I have now is really affecting how much I do and how often I do it. I could always rely on my arms and my joints have never given me trouble until recently, especially my right wrist.

              Same here Shannon. With the decrepid state my body is in, I wonder how much longer it will last.

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              • #8
                Originally posted by tocker
                I had read a longitudinal research article somewhere that studied the aging patterns that SCI's have. They talked about how it takes 2-3 years to adjust after the injury...a run of 20 years of great and/or stable health and at that point we started to wear out and have a large increase of health issues. Has anyone else ever hear of this research? What do you think? Is this true in your experience?

                tocker
                Sounds a lot like my experience. I'm only 18 years post, but I've already started having new physical problems I've never had to deal with before. It's mostly assorted aches and pains, but wrist pain, in particular, is making me face the very real possibility that I'm going to have to return to using a wc after about 15 years of being able to get around with crutches. I hadn't ever heard the prediction about new health problems as well, though I can't say I'm surprised....just not looking forward to it

                Sim

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                • #9
                  I am 31 years into this bizarre life to which spinal cord injuries subjects us all. I gave up my car after about 15 years and started driving a van from my chair to save my shoulders from the wear and tear of the transfer and the loading and unloading of the chair. I started using a slide board for transfers in and out of bed when I have clothes on otherwise I still do a pivot transfer. I made this concession about 10 years ago. In May I made the transition to a power chair. I have had one shoulder surgery to repair an impingement. My shoulders are still in pretty good shape at age 67 and I have been cranking on my stationary hand cycle 3 or 4 times a week for a half hour. Without doing this I wouldn’t get any exercise at all. I believe the reason my shoulders are in still in fairly good shape at this stage is the early concessions I made and quit doing the macho BS. The biggest snag for me in the 31 years has been the fact the arteries in my legs are blocked with plaque. I have had an arterial graft to bring blood flow back to my left leg which was the worst one and things were looking good for awhile, but now after 2 years and 2 skin grafts I still may lose my left leg below the knee. I still feel optimistic about the years I have left and expect to make 70 and beyond, maybe because I haven’t grown up yet.
                  William M.
                  T 6/7 Complete - 4/20/74

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                  • #10
                    My disability is congenital (spina bifida) but I noticed things starting to go wrong around 25, bladder mostly but shoulders, wrists as well, bowels in fact my whole gi tract is giving me grief but I think thats mostly due to my scoliosis giving me such a short torso, not a lot of room for the old abdominal cavity.

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                    • #11
                      I have had to give up Sex , just kidding, never

                      I did have to go to a higher backrest on my w/c as I had used a low one for years and noticed I was starting to slump, now I tend to try and lean back more in the chair against the backrest.

                      I tend not to bounce around as much in the chair as I use to when I was younger, use to do things like bounce down a whole flight of stairs, now I would not think of doing such things.
                      "Life is about how you
                      respond to not only the
                      challenges you're dealt but
                      the challenges you seek...If
                      you have no goals, no
                      mountains to climb, your
                      soul dies".~Liz Fordred

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                      • #12
                        this is an interesting thread - the inevitability of aging and the wear and tear on the stronger functioning limbs/parts that are bearing most of the brunt of just getting through an average day. I am a T4 and only 5 years post, but was injured at the age of 45. Although I worked very hard to get as much strength and mobility back as possible, at the grand old age of 50 I can already see that those achievements will start to slide before too long. My stamina is just not what it used to be prior to my accident, nor anywhere close to that of a 25 year old. I eat well, sleep pretty well, keep myself as healthy and active as possible, but still coping with pain, spasms, bladder & bowel management etc on top of all the other "normal" daily living chores seems to require so much effort - physically and mentally! I can see the next 5 years will be manageable provided I have no major setbacks, but beyond that I don't know. A life any less independent would be hard to accept.

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                        • #13
                          Originally posted by Spadfan
                          I still feel optimistic about the years I have left and expect to make 70 and beyond, maybe because I haven’t grown up yet.
                          What an awsome attitude..31yrs and 67yrs old,wow..

                          What advice could you give someone 7yrs in? Thinking back now,what would you have maybe done or changed a little sooner,if anything?

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                          • #14
                            There are things to try.

                            Do they work? I dunno.
                            I am 56..oh brother.

                            Am taking my daily caloric intake with the multitude of supplements and natural products to avoid drugs period. I don't know if it is helping..but think so.

                            I can only judge by something I don't know..like how would it be without them. Might though be something the newer injured should do.

                            If you have a body full of metal like I do..well you have to just either insist it's all removed and turn into a deformed troll or deal with it as you age..I chose deal with it.

                            Personally the water is my savior.
                            Sleep is not an option most of the time.
                            Fatigue is overwhelming..and pain is and always has been a daily issue..just tons more of it..so you have to improvise and compromise.
                            One day some body part works..the next day it doesn't.

                            In between this crap LIVE IT UP..that's my way of dealing with it. Not for everyone..but it works for me.

                            I don't foresee too much except turning into a drug
                            filled zombie coming from medicine for this problem of aging with in my case post polio..but maybe something will come for the younger ones. Hope so.

                            Shaun asked if one should do something differently?
                            Yes, live to the max. Travel extensively..even during your days of demise..love..be happy..help others..and
                            just live until it's over.
                            Life isn't about getting thru the storm but learning to dance in the rain.

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                            • #15
                              Lynnifer, i am just now thinking about giving up my car. This is a tough one. I'm thinking Van.I did go 3 yrs. without one and survived 96-99. I gave up smoking and drinking, which were both benficial. I'll be post 33yrs.on the 15th of this month. Whatever comes i'm sure i can adjust. I thank God for my sustainability...
                              Last edited by murrey; 09-11-2005, 11:36 AM. Reason: addition

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