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Thread: Any long termers?

  1. #1

    Any long termers?

    I often peruse these boards and find that most of the participants
    are injured 10 years or less. I was wondering if there is anybody here who has been injured 20 years or more. I have been a T12-L1 para for 22 years. It seemed like in the begining I was great. I was 17 years old, in shape, zipping around in my Quickie, having alot of fun. Im now approaching 39 years old and there are days I feel like an old man. Everything is getting harder and Im dealing with alot of medical issues now. There are days I just dont have the patience to put up with this injury any more. But I keep trying and trying. Worrying and often dealing with accidents, UTI's, skin sores and in my case very bad urological issues such as a kidney full of stones, baldder stones and infections. Depsite your best efforts, these things are often inevitable. If there are any 20+ years injured here, Im curious how life is treating you. Im not sure if this post is appropriate for Care forum, so please move if necessary.

  2. #2
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    I'm 37, and a little over 22 years post, c5/6. Life has been pretty good the past couple of years with some interesting twists lately.

  3. #3
    Discussed here many times before. It helps to know age at injury plus time since injury, as well as level and ASIA category for such a discussion.

    Here are a few previous threads:

    http://sci.rutgers.edu/forum/showthr...=oldest+injury

    http://sci.rutgers.edu/forum/showthr...=oldest+injury

    http://sci.rutgers.edu/forum/showthr...=oldest+injury

    (KLD)

  4. #4
    Senior Member lynnifer's Avatar
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    Lots are on here! I just passed 23yrs post here (paralyzed at 12). I had the exact same 'aging' complaints, starting when I turned 30.

    Look for ways to make living easier. For example, my most difficult transfer was out of the car and back to my chair. It never used to be, but shoulder problems made it so. I started using a transfer board, just to get out, and I think it's made the difference. My shower bench is a lot more equal to the height of my chair than in years past. I'm still managing bed/shower/toilet/couch/into car transfers well. I gave up on the tub and had only done that one minimally - too hard on the shoulders. I had a rough time last year trying to get out of a rocking recliner .. pffft .. I'll try it again when I feel a strong day upon me, lol. Is your chair lightweight? I'm looking into one for this year - why should I struggle when I don't have to? Why should you?

    As for infections, I'm dealing with Osteo in my left foot but finally found a doctor and a plan that suits me. It was an ongoing battle - don't fret pet - there'll be a light at the end of the tunnel. Skin? Theory says that the longer we're in the chair, the more prone we are to pressure sores. In my 23yrs of paralysis, I've only had 4yrs of complete wound-free skin. The good news is treatments are getting a lot better.

    I'm afraid that I'm not much help in the uti or stone department - I've been blessed not to have such problems since I use a crede technique to urinate - but I do have a severe leakage problem, mostly at night. It never used to be this way! I know my days of intermittent catheters may come back and I've recently considered a foley for night, although I wouldn't know where to start and am terrified at the possibility of recurring uti's. My urologist died in May of heart attack. Hopefully there will be treatments soon to help micturation be more normal (thinking Dr Xiao here).

    I only wish I had the energy I did when younger! I think our aging is amplified ... or you have to work harder to keep it as in diet and exercise (and regretably I put shift work before my health - which I admit now was a huge mistake). It's going to be a looong road back. I also think when we were rehabbed at the time we were during the 80's, the (cl)onus (jk.) was on us to survive however possible. When I first came here and read that a newer para was using a power chair, I was horrified. I now understand it's all different now and about 'preserving' what you have.

    The biggest thing is try to solve one a time. Otherwise, they all group up on you and it can be hugely overwhelming. I did that and became severely depressed. You said you worry - that's my biggest enemy and yours too. It really does affect our immune systems - I swear it does!

    I know there's been countless others with bladder/kidney stones and assorted problems ... hopefully someone chimes in with something more helpful than I can suggest. Stick around!
    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

  5. #5
    My general complaints are the problems with my urinary tract as well as feeling achy and tired. Plus the fact that I worry about every aspect of my life. This can also manifest physical symptoms. I also cant go running around drinking and dating anymore. Yet, I see people my age, often with far far worse health issues, believe me, doing exactly that! I dont understand where they get the energy, as I just cant seem to muster it up.
    Those days are lONG gone for me. We hear alot about "life begins at 40" or "these are the golden years". I just dont see it. There are a few days when I can push for miles, and have, in my chairs. Then there are days Im too exhausted to get out of bed.
    Maybe this is just the variation of life?

  6. #6
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    Hi Para33,
    I just passed my 42nd anniversary of my SCI, which happened when I was 17 (59 years old now). I also do not have nearly the energy I once did, and it is complicated further by pain issues that are pretty intense at times. I try to take it one day at a time, and I literally sort of have a mental list of what I am willing to do on any particular day. Once upon a time that list was almost boundless, now it is about two things and that is it. Meaning, for example, grocery shopping and meeting a friend for lunch. House cleaning (of sorts) and laundry, with the rest of the day doing nothing but resting. I am a higher injury than you, but am now using a powerchair fulltime. Save your shoulder's as much as you can for the long term, information I wish someone had shared with me way back when. I worry too about the future, but I have made it this far and have no intentions of bowing out any sooner than necessary. If that means I have to keep upgrading my equipment to remain at home I will do whatever it takes.

  7. #7
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    Welcome Para33.

    I'm 64 and have been SCId the past 46 years since being shot by a wayward brother when I was 18. I built myself up to an impressive upper body physique and maintained it for over a decade and a half - through pursuing a BA in three different schools including the U of I at Urbana, Ill.. The overbuilding and overuse of my arms and shoulders took a toll on me, mainly in the form of pain but for the most part*, although never pain-free, I been spared the levels of pain and central pain that so many with spinal cord injuries cope with.

    I've lived independently and mostly on my own all my adult life and have lived in the same little house in N. CA for the past 32 years with HUD housing assistance. At this stage in my life I can anticipate some considerable health/function problems in the not-so-distant future but - knock on wood - so far all I've had to cope with is some recurrent bowel blockages, no doubt related to my bowels slowing down somewhat. I'm increasing the roughage in my diet a lot by increasing the amts. of fruits and veggies and the addition of some chia seeds with every meal not brimming with fiber.

    You've had a long road to hoe but you should be able to go a lot longer with planning, effort and a lot of luck. With all your health/pain issues I'm wondering how good a diet you have, in the sense of "diet" being whatever you regularly eat.

    *Edit: Most of the arm and shoulder joint pain let up as I gradually did less and less extended, stressful things that over-exercised my arms. I almost miss the cut, cord-veined look of them over those years but the trade off is much to be preferred. Save your arms/joints so you'll have some mobility as the years accumulate.
    Last edited by Juke_spin; 08-24-2008 at 06:18 PM.
    "The world will not perish for want of wonders but for want of wonder."
    J.B.S.Haldane

  8. #8
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    I was 18 when I had my SCI and that was 36 years ago. Over the past four years my transfers have gotten harder and I have more pain guess those are my biggest complaints. It got where after transferring in and out of the car a few times it took me two days to get over the aches and pains so I finally bought a van. I have never been a van or truck person so I don't really enjoy driving the van but the swap is worth it not to have the pain. Also is nice to transfer to the drivers seat out of the rain plus I don't have to break the chair down to get it in the car. I don't have the energy I did have but not sure if that is SCI or just the fact that I am older.

  9. #9
    Senior Member lynnifer's Avatar
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    Quote Originally Posted by para33
    My general complaints are ... as well as feeling achy and tired. Plus the fact that I worry about every aspect of my life. This can also manifest physical symptoms.
    Two years ago I started on a multi-vitamin. I had taken them (the same kind) on/off before but they just turned my pee an off-colour. Then I decided to switch from Centrum to One-A-Day. I don't know if it's placebo or what but I felt a definate difference, and clear urine, yay! I've run across enough just in this little community to wonder if anemia isn't something specific as a side effect to paralysis - even Dr Young has suggested an increase in metabolic disorders.

    Leading to ... have you been tested for anything extra that might make you tired lately like an iron deficiency or thyroid function? Admittedly I'm taking half a pill of Ratio-citolapram (an anti-depressant) and that probably helped too.
    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

  10. #10
    I think manual chairs should be banned, and I am sure they remain because insurers like the fact that they are cheaper. Power chairs are now built much more compact, and I for one I have been using one from the start. I would have never been able to return to my kind of work in a manual chair, and did not try either. Power chairs recline for butt rests, they lift you up to reach things, the lift footrests for a change in angle, etc. You always have one hand available, provided you are a para that is. I still have built a lot of upper body strength because, even in a power chair, we use our shoulders a lot more than necessary for transfers and so forth on a daily basis. Exercise should not come in the form of pushing yourself around for hours. That only exercises, actually stresses, the heck out of the same muscles, day in and day out. What dumb exercise is that? Hand skin also suffers. Pressure sores more likely. Better use a power chair for locomotion and add a rational exercise program to your routine.

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