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    #1

    Optimism seems foolish

    So I'm in PT/OT 6 days a week. My very good insurance company says the goal is to get me back to where I was before I fell and broke my ankle. I broke the ankle on my good leg, other leg is my weak leg. So pretty much I am back to where I was before which was being able to stand for about a minute, enough to get on my scooter go to the bathroom, go to the living room to get on the recliner or going to my office or my studio, that's it. I was unable to go to my doctor all year however I did make it to the neurologist finally in October but then broke my ankle a week later.

    I can't go to the bathroom here, I wear disposable underwear and have an aide change it for me while I'm still in bed. I don't see myself ever using the bathroom again, I don't see myself ever walking again, the strength is just not there in my legs no matter how much the PT/OT people push me and say I have a negative attitude, I know when I'm about to fall and they're pushing me towards that. My husband can't take care of me so how can I ever go home? Is this my home now?

    What will become of me? Tysabri has helped with my left arm weakness but not my right leg, and it may not help anymore. I'm so depressed and hopeless.
    ---------------
    "It's never crowded along the extra mile." --Dr. Wayne Dyer
    Tags: None
    #2
    Forever

    Will your ankle be broken forever or will it heal? Are you in a restorative care home? That was not clear. I wish I could tell you that things could be worse but I am not in your shoes so I cannot tell you that. Do you have a hobby?
    I may have MS but MS does not have me!

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      #3
      Have you tried any water therapy? I luckily live in a place where hospital as a health and fitness class in a very warm pool. I get to practice all my stretching and balancing in that situation. It is helping a lot.

      Optimism is important. Hope is all we have at times, and if we throw that away, then all we can do is be in despair. I hate to hear anyone get to that point.

      I hope beyond hope that you find some peace.
      Brenda
      Adversity gives you two choices in life: either let it make you bitter, or let it make you better! I choose the latter.

      Comment

        #4
        Yes my ankle will heal

        But my legs are still weak from MS.

        There's no water therapy here, I wouldn't be safe in that situation anyway.

        I'll keep trying but I know when I can't push myself anymore. You get to a brick wall and you can hurt yourself if you push into it.
        ---------------
        "It's never crowded along the extra mile." --Dr. Wayne Dyer

        Comment

          #5
          Have you thought about your wishes and options should MS progress to the point of not being able to care for yourself?

          Probably a stupid question, that is all I have thought about the entire 10 years since my diagnosis with this miserable disease.

          I hope you see some improvement soon. Please keep us posted.
          He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
          Anonymous

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            #6
            End stage plans

            Well I have a friend of the family who is end stage in his 80s and he's still at home, has a nurse who comes every day and his wife takes care of him. So that's about what I was thinking.
            ---------------
            "It's never crowded along the extra mile." --Dr. Wayne Dyer

            Comment

              #7
              I had a flare once and was unable to walk. I thought O.K. This is it.

              I had PT, just like you. It was horrid and painful. I was angry and miserable. But in the end, I was indeed walking again. It was not very good, but it got much better as I got stronger.

              I think you are depressed...who would not be? I think you are in dispair...been there too. So you really have one choice if you want to get out of that Nursing Home. Give it your all. It might not work, but what do you have to lose?

              You have had only one Tysabri infusion...it is not enough. But even with TY you have to be willing to try and meet it half way. If you were able to use your broken leg before...you will most likely be able to do it again.

              Do not give up on yourself now...your body needs you more than ever.
              Katie
              "Yep, I have MS, and it does have Me!"
              "My MS is a Journey for One."
              Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

              Comment

                #8
                Originally posted by RockysMom View Post
                Well I have a friend of the family who is end stage in his 80s and he's still at home, has a nurse who comes every day and his wife takes care of him. So that's about what I was thinking.
                Is that feasible for you now if you decide you are finished with PT? I'm not sure how much all this costs or if insurance pays any of it. Would your husband be willing to take care of you when the nurse isn't there?

                Keep in mind, like KatieAgain wrote, with MS there have been many stories of people who have made great improvements when it seemed futile so hopefully this won't be necessary for many years.
                He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
                Anonymous

                Comment

                  #9
                  KatieAgain

                  Thank you so much for your words of encouragement.

                  The situation is this: in Sept 2013, I was walking. Not a whole lot, using the rollator. Went out with hubby and dogs, came back, fatigue hit. I fell at in the foyer between doors. Managed a way to get up but was afraid ever since then so I took my scooter everywhere from then on.

                  Would stand to get on scooter from bed, scooter to and from toilet, scooter to and from recliner, scooter to and from power chair in my office. Right leg had always been weak but became weaker until I could no longer get in our van. Had Bruno Valet turning seat installed in August but had been unable to go to doctor all year because of these problems. Standing to get back onto scooter became controlled falls after stand pivots.

                  Lot of time spent in bed, sometimes days at a time because hubby had to run long errands. But also had strong days. Then this past Sept., fatigue became worse, standing became harder and harder until I finally fell while getting off toilet to get on scooter, broke ankle on my good leg.

                  So here I am. Do you think I could really get back to walking after not having done it in a year+ with PT and Tysabri?
                  ---------------
                  "It's never crowded along the extra mile." --Dr. Wayne Dyer

                  Comment

                    #10
                    Originally posted by Jules A View Post
                    I'm not sure how much all this costs or if insurance pays any of it. Would your husband be willing to take care of you when the nurse isn't there
                    Insurance covers all of it, 100%, thanks the ACA. My husband isn't able to take care of me to this extent because he must work although he is working from home, he has to work. I will keep trying. I will work hard but being away from home, even though my husband visits every evening sometimes bringing a fur kid, is just torture.

                    However the facility I'm at is top notch, the staff are awesome, it couldn't be better.
                    ---------------
                    "It's never crowded along the extra mile." --Dr. Wayne Dyer

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