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Looking for more independence

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  • Looking for more independence

    I am a male C6-7 quad 15 mos. post. Strong upper body and arms but very limited hand dexterity. Also, balance is good and reach is good. I'm interested in hearing from others with a similar profile, particularly concerning hands/fingers, as to how you've become independent? Without a strong enough grip and pinch I'm having difficulty.

    Currently I utilize an aide for one hour in the morning. Primarily their function is assistance with a bowel program / leg bag change and dressing. My goal is to fire my aide. Not because of any problems but to become more independent. What suggestions do you have? The more detail the better. And please not necessarily product specific, although if you've had really good results with a particular piece of equipment please mention it, but more about how you do it? how long it took to learn? certain methods or tricks that you use?

    I believe that we learn the most from each other and I'm sure many of you have made some incredible adjustments / adaptations towards independency and I'd like to hear from you.

    Thanks in advance for your help. Chris.

  • #2

    Have you tried either a suppository inserter or digital stimulator? Both of these are used by many of my clients at your level of injury. With the right commode (with cut-outs on the side) they are able to do all their bowel care. Clean up can be done with a "toilet aid", bidet, or a bath mitt that you reserve just for this use and wash between each bowel program.

    It is easiest to learn to use the digital stimulator if you position the commode over a chux (not over the toilet) the first few times and position a mirror on the floor so you can see what you are doing. Once you have it mastered, you can position over the toilet or use the commode bucket.

    Most people at your level can apply their own leg bag if they have the ROM to bend their knee and hip and cross their legs, then use velcro/elastic leg bag straps with loops or plastic "D" rings sewn in place. Do you use an external or indwelling catheter? If indwelling, some people leave the leg bag on all the time and just attach the night bag to the drainage port. Even this takes some practice, but I know several people who find that wearing rubberized push cuffs when they push the tubing on/off connectors helps a lot.

    Dressing is a challenge, but can also be done, esp. if you have good ROM and have someone who can sew in loops on your pants, socks, etc.

    Can you see an OT for a few sessions to help you fine tune your skills in this area?


    • #3
      Looking for more independence

      Hey. I am a C6-7 quad 13 yrs. post. I would be happy to tell you how I do specific things in hopes it would help you. Send me an e-mail.


      • #4
        It takes time

        I'm physically exactly like you, now twenty-one years post. I had a little OT in the beginning but it wasn't helpful for me because I was so self-conscious. My family never hired an aide for me. I think this is why I became independent so quickly. I really didn't want anyone helping me with my personal care. Of course, I didn't have a choice, at first.

        I loved staying home from school and just doing things for myself. If people were around I had ten paralyzed thumbs instead of ten paralyzed fingers. Being alone gave me the freedom to experiment and use my teeth for everything if I had to. I started figuring out ways to do things with my hands that I never thought I would, again. Soon, I was even building fires in the woodstove by myself. It takes a lot of time and trials but you can figure most of it out. I also wouldn't underestimate adaptations like loops on your zippers and tools like a button-holer or whatever it's called. I don't use them anymore but they can be very helpful in the beginning. If you have to spend three or four hours with your routine at first that's normal. You can easily get it under two hours with practice. Also, shoot for a bowel program no more than every other day and some even do it every three days. Those "off" days are fabulous. Some do their BP in the evenings until they get it reliable and fast enough to accomplish it in the morning.

        Hang in there. Sounds like you're doing great, plus things only get better. I fool people today who don't realize that I have any hand deficit, at all.
        ~See you at the CareCure-used-to-be-paralyzed Reunion ~