Viewing 5 reply threads
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    • #21500
      Jilly
      Participant

      Sometimes I just want to walk and get up and go, without having to think about each move I make so I don’t fall over. As I sit here I plan to multi task before I get up, can’t do it on the fly. In my mind I think how did this happen to me? The only time I am comfy is in bed. Every morning when I wake up…I say to myself, “not this again, another day of aimless existence”. My mind wants to move faster than my body, it took about 3 years for my mind to adjust to my slowness, and I hate how slow I am now. Sometimes I wonder how did I get so slow? is it real? am I making it up?

      Like I mentioned. I just want to walk because I remember being able to walk. But that is never going to happen again with PPMS.

    • #21501
      John Connor
      Keymaster

      Hi Jilly,

      I lost the ability to walk a few years ago. Also my days of using a manual wheelchair just skedaddled. So obvs. did my budding career – NOT! – in wheelchair tennis.

      The upside is a powered wheelchair – no falling worries and at top speed it’s as fast as an Olympic walker. Though, a tad unnerving.

      Cheers John

    • #21508
      Jilly
      Participant

      Hiya John, thanks for chiming in.

      I wonder at what point do I move to a wheelchair. I don’t know how bad it has to get. I suppose if I am dragging my leg is an indicator.

      I can’t see myself playing wheelchair tennis, I have trouble just leaving the house. I’d rather be dead than live like this, it’s very pedestrian and predictable.

       

      • This reply was modified 2 weeks, 3 days ago by Jilly.
    • #21511
      John Connor
      Keymaster

      Hi Jilly

      It sounds like it’s time for u going wheelie mobile.

      How r u’re arms? My right one became near useless so I could no longer use a manual chair. However fatigue sets in with any distance. I couldn’t go anywhere on my own as even slight inclines proved impossible.

      I’ve also had to adapt the drive and front door [all now wheelchair friendly] so can venture out on easily.

      It was attending an outdoor music festival in 2012 that made us all realize I needed a chair. Had to beg for one from the organizers as they had no transport for the disabled. Sheesh.

      Hope this helps. Please let me know how u get on.

    • #21513
      Ed Tobias
      Keymaster

      Hi Jilly,

      Have you considered an electric scooter, rather than a chair? I got one more than 10 years ago and it was one of the best decisions I ever made. It allowed me to continue working full-time much longer than I would have been able to without it and I use a lightweight one that can be folded to travel all over the world.

      Stop suffering. Try your best to get some wheels and get out of the house!

      Ed

    • #21517
      Jilly
      Participant

      Thanks guys. I just don’t know how bad you have to get, but I am very slow moving with my walker. I have one good leg, but even that doesn’t seem to help, my arms are good.

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