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De-lurking to tell my story

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  • De-lurking to tell my story

    Hello all. First, I must say/write that this is a fabulous place in cyberspace. I am 10-months post, C-4/5/6, incomplete- central cord syndrome. I spent a considerable amount of time (5+ months) in 2 rehab facilities. One of which I credit for giving me the function I have. That, and a lot of work and fierce determination on my part.

    I walk with a walker (no balance) and have both right and left AFO's. I regained my bladder and bowel function at 6 months. My left side is stronger than my right and I have quite a bit of spasticity/tone. Hand/finger function is poor, but better than it was. I type with my pinkie knuckle on my left hand and I am not able to use my right hand (I'm a rightie transitioning to a leftie). I need considerable help with clothing management, bathing, etc. Meds include baclofen, tizanidine and diazepam, as well as some bladder meds.

    Believe me, I am incredibly thankful for what I have. Since my return home, progress has been slow. I know, I know, probably asking for too much, too soon, right? I have PT and OT 3 days per week (each) at home, and I am starting to think outpatient therapy might be more beneficial, as I am not terribly happy with my present situation.

    Well, I am off to other forums to ask for exercise and equipment advice. Thank you very much for listening/reading. I am very happy to be here!

  • #2
    welcome to the board, JW!

    I have learned a lot in the last month or so that I have been lurking here. [img]/forum/images/smilies/biggrin.gif[/img]

    Raising a teenager is like trying to nail Jell-o to a tree.


    • #3
      Welcome, JW.

      You'll probably find that much of the best OT happens in the home. Your hand function sounds similar to mine. Does your right hand have tenodesis?

      Do your level best to dress yourself even if it takes 2 hours. It will get easier. Someday you'll look back and wonder why it was so hard.

      You'll be a lefty in no time. I was the same way.

      Lucky break on bowel/bladder, way lucky.

      I found the best OT to be folding dish towels. I swear that's what got my hands up and running.

      "...I mean the wheelchair would be a thing in the past
      And us quads can talk about the past and laugh"-Professirx
      Does This Wheelchair Make My Ass Look Fat?


      • #4
        JW, so glad that you are here. You are still early. Most people with central cord syndrome recover substantially. Wise.


        • #5
          I second what the others said.

          I also wanted to say that if you can get into a good SCI-specialized outpatient therapy program instead of a home care program, go for it. They should have more expertise, and more access to specialized equipment that you cannot get in a home program. In addition, you get more opportunities for social interaction with others with SCI in an therapy gym than at home.

          The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.


          • #6
            Thanks to everyone for the advice and encouragement. It's great to be here.