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Aging with a SCI

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    Aging with a SCI

    Hi All,
    I've been a quad for 18yrs due to auto accident. I've always been strong and self reliant, that is until now. I've become so weak that dressing and transfering is getting hard. I recently got an assistand who comes M-F for 3 hours. She is a tremendous help in the am but now getting read for bed is exhausting. I'm afraid of what my future holds and don't know what the solution is. Can't afford full time help.

    #2
    No easy answer to that one, and a fear I think many of us have. Is there any family that can help........or maybe you would qualify for some state assistance?

    I'm sorry you're having to deal with this...good luck to you.

    Comment


      #3
      Has this been a sudden downturn or has it been very gradual? What level is your injury? Do you feel well other than for the weakness? Do you exercise? There are a lot of things that could be going on other than aging.
      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
        Many possibilities

        Originally posted by SCIfor55yrs. View Post
        Has this been a sudden downturn or has it been very gradual? What level is your injury? Do you feel well other than for the weakness? Do you exercise? There are a lot of things that could be going on other than aging.
        38 yrs post injury here, and I agree with SCIfor. See a General practitioner for a full physical. Good luck.

        Comment


          #5
          syrinx?
          c5/c6 brown sequard asia d

          Comment


            #6
            Being just 2 1/2 yrs post, can't offer the aged advice on getting older with a SCI, but agree with the others here to have an extensive physical, including a MRI w/ contrast, if possible. Also, be sure a radiologist experienced in reading SCI results is involved. Have had a couple bad experiences with inexperienced radiologists, who cost precious time, which lead to further damage from compression.

            Comment


              #7
              Originally posted by jerkens View Post
              syrinx?
              My first thought. An MRI for a syrinx would be my priority.

              Comment


                #8
                I totally agree with SCIfor55....

                .... however I see from your profile that you're 51.

                I was fine until I hit 50 it was then that life became hard work, shoulder pain, fatigue, etc., etc, and I also started to lose interest in things I had been formally passionate about.

                The shoulder pain is real enough and I don't have the energy I once had but as for the rest I often wonder if there was some psychological input from the 50th birthday milestone.

                Comment


                  #9
                  We get so focused on dealing with SCI that sometimes we forget that we are still prone to all the other insults of aging. Take your symptoms to your doctor and see what comes of it...good luck.
                  Tom

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

                  Comment


                    #10
                    Originally posted by TomRL View Post
                    We get so focused on dealing with SCI that sometimes we forget that we are still prone to all the other insults of aging. Take your symptoms to your doctor and see what comes of it...good luck.
                    Excellent point, Tom

                    Comment


                      #11
                      Originally posted by tamfromtn View Post
                      Hi All,
                      I've been a quad for 18yrs due to auto accident. I've always been strong and self reliant, that is until now. I've become so weak that dressing and transfering is getting hard. I recently got an assistand who comes M-F for 3 hours. She is a tremendous help in the am but now getting read for bed is exhausting. I'm afraid of what my future holds and don't know what the solution is. Can't afford full time help.
                      I'm 33 years post and now 73 years old. This is the hardest part, aging in a chair. I'm looking at some form of assisted situation. An apartment in some sort of complex where there is help available when needed. I still cook for my self and drive and food shop, the pain keeps me home mostly.

                      I have an assistant who comes Mon Wed and Fri for 3 hours in the mornings makes the bed does the laundry clears the kitchen sink LOL, I used to love doing dishes especially pots and pans, no kidding, she sweeps mops and vacuums. My wife of 12 years left two months ago leaving me in a 3 bedroom rental. The main reason is that we don't have a life don't do anything..............

                      I'm looking a possible room mates but this could be hell so I hesitate.

                      I don't know what to do. I guess that I'm lucky because I don't have problems dressing and transferring. But my shoulders and hands are beginning to feel the wear and tear of being arms and legs for 33 years. I haven't had a real bath or shower in a long time, it is sponge baths only. Living alone is not fun at this age.

                      Good luck, and yes see a doc asap. find out the medical reasons for this weakness, it could be resolved. Get a full check up.

                      Assisted living residences are an option.....
                      Gary Is = L-1 Para for 34 years.....................
                      ~~~~~~~~~~

                      Comment


                        #12
                        I regard my SCI as a secondary disability. I dont expect to make it to 65. I don't know of one person with my dominant forms of cp at my age. I hope Im dead by 60 by then my quality of life will be worse. I am 55 now, as my primary disabilities take their toll and the other problems associated with them grow worse, I already have booked a place in with a higher level of care but it hasn't been built yet and I will probably be found dead before then. Have made a list of people who will be contacted by email and given it to my services coordinator Cass, Patricia, Lexi, Daniel are all on to be informed.

                        Comment


                          #13
                          I just keep deteriorating, as I have from the start. The pains keep getting more intense, I've pretty much lost my shoulder shrug, I've lost the normal sensation at the top of my back (replaced by pain, of course), both my shoulder blades are catching, my spinal curves keep worsening, and so on. Breathing and swallowing get more painful as the abdominal skin, muscles, and organs worsen. My concentration is poor, and that also worsens as pains do. Movement aggravates the pains, as does riding in my chair or van, so I can't travel far. I've been an incompetent, dependent quad, and I'm sick of it. I want to have some kind of life. I could live 30 more years or so (I'm 51), and the idea scares the hell out of me after what's gone on the past 30.

                          According to neurosurgeons over the years, I have no syrinx, my MRI scans show no change over the years, and they have no explanation for why pains get worse or why they spread upward.

                          For one month after my injury, I felt nothing below the level. I can honestly say that, even if that had remained how I felt, I would not have become as accomplished as you folks have, because I never was a can-do personality. I do know I would have done better than I am.
                          Alan

                          Proofread carefully to see if you any words out.

                          Comment


                            #14
                            Originally posted by Garyis View Post
                            I'm 33 years post and now 73 years old. This is the hardest part, aging in a chair. I'm looking at some form of assisted situation. An apartment in some sort of complex where there is help available when needed. I still cook for my self and drive and food shop, the pain keeps me home mostly.

                            I have an assistant who comes Mon Wed and Fri for 3 hours in the mornings makes the bed does the laundry clears the kitchen sink LOL, I used to love doing dishes especially pots and pans, no kidding, she sweeps mops and vacuums. My wife of 12 years left two months ago leaving me in a 3 bedroom rental. The main reason is that we don't have a life don't do anything..............

                            I'm looking a possible room mates but this could be hell so I hesitate.

                            I don't know what to do. I guess that I'm lucky because I don't have problems dressing and transferring. But my shoulders and hands are beginning to feel the wear and tear of being arms and legs for 33 years. I haven't had a real bath or shower in a long time, it is sponge baths only. Living alone is not fun at this age.

                            Good luck, and yes see a doc asap. find out the medical reasons for this weakness, it could be resolved. Get a full check up.

                            Assisted living residences are an option.....
                            Add at least another 15 years to that 73 for SCI and shoulder and hand and finger pain and elbow pain all you fell like doing is laying in bed most the time so it don't hurt.
                            Am 59 now going on 37 years and this has been the worse year.
                            I can still mow the lawn take care of myself but its getting damm hard.
                            The things I used to love doing just don't matter no more.
                            I have 2 classic cars and be lucky if I even get em waxed this year....1 is half done and its so damm hot am not in the mood.
                            If am in the mood I can still do most the things I love ....but the mood is getting worse....my main reason my shoulders hurt.....like a bad tooth ache that just won't go away.....so I just say the hell with it.
                            Being taken care of is not a option for me....that is no way for me to live.
                            I'll end it somehow before I get that bad IF I have the chance.

                            Just being honest.

                            Art
                            Art

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