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Thread: Coping with becoming 'Quadriplegic'

  1. #21
    Senior Member Katilea's Avatar
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    Mar 2009
    Yorkshire, UK
    what you use for computer access?

  2. #22
    I type left handed one finger. Typed my whole phd thesis (still working on it) that way. Voice is effected by CP,so um no voice activated software.

  3. #23
    Senior Member Katilea's Avatar
    Join Date
    Mar 2009
    Yorkshire, UK

    How do you compensate for the involuntary movements when you are trying to get your hand/arm to do something?

    Does stiffening your arms work to get it to item more accurately or right key on keyboard? holding one hand down with the other or wrist weights?

    I seen some videos of kids with CP and they seem to have a splint on the whole way down their arms so so they cant bend their elbows, I cant see how this would be practical in teaching them how to control their arm movements, so guessing their movements must be so severe that they couldn't use their arms anyway.


  4. #24
    This might become a long winded explanation of CP.
    1) CP Is brain damage to the parts of the brain that control movement, shortly before birth, at birth, or within the first 2-6 months after birth. If we start out with fewer brain cells and as we all age we loose brain cells at the same rate as everyone else we get worse with age.
    2) there are 4-8 types of CP depending on who you ask, it's rare for a person to have just one form, I have 3, left arm choreo athetotic 5% of cp's have this form, right arm dystonic 1-3 % of cp's and spasticity everywhere 1/2- 3/4 of all cp's have some spasticity.
    3) Hard splinting is rarely ever successful in choreo-athetosis and not recommended in dystonia. Any point of resistance is resisted - my right hand splint is designed to permit spasms and return the hand to a natural position.
    4) most severe cp's have noticed arthritis by age 20-25, I was being treated for arthritis by age 22.We wear out joints.

  5. #25
    Involuntary movements???? I have very few movements that aren't affected. I don't know what stillness is like. I am a mass of movement. All day everyday.

  6. #26
    Senior Member Katilea's Avatar
    Join Date
    Mar 2009
    Yorkshire, UK
    so how do you manage stuff like typing?

    I'm aware of the medical defintions but I want to know about the practical tips and tricks that may help with day to day so I can see if they work for me when I'm having more difficulties as my condition progresses.

    I want to know whats still possible despite these difficulties? To me its encouraging you can still use an hand to type despite all that movement as typing and spelling things out is a big part of my life cos of my communication difficulties (I also use lightwriter to speak sentences) so the fact you can still manage to type with a finger despite your difficulties which sound much worse than what mine are at the moment is encouraging as I thought my only option would be to resort to switches and scanning (which is so slow) as an eye gaze communication aid/computer is way out of my budget.

    I guess basically I want someone with involuntary movements to tell me how they manage doing daily stuff like getting dressed, feeding, communication etc so I can get an idea of what I might need and what still maybe possible at different stages.


  7. #27
    so how do you manage stuff like typing?
    I put a pencil, preferably with a rubber eraser end, into a universal bracelet and use sticky keys, which you can find in the accessibilty options of any Windows or Mac computer.

    Some ppl have a tool especially made to type with but I'm a universal bracelet kind of guy: they're good for toothbrushes, utensils, pens... I keep one in my bag and a couple around the house. Here's a video I just made.

  8. #28
    Senior Member
    Join Date
    Jul 2007
    I type w/ my thumbs & trade hands when one arm gets tired. No, they aren't "functional" techniquely speaking either. I started the way Christopher does. You can use a u-cuff for typing, eating, brushing teeth whatever if you find that works best.

    Coping w/ quadriplegia in general? Just have to really. Some days are really hard but I want to make the best of it. Your situation sounds way harder to deal w/ though.

  9. #29
    I have left arm control to some degree depending on muscle tiredness, time of day, etc. I break words down into the bits own, ness, ing, ear, eir, ture, end, you, ough ght etc and once you have trained yourself where the bits are in relation to each other on the keyboard you get to the stage where your brain-hand-eye automatically knows where to go. I type looking at the keyboard, make mistakes and then go back to correct them. I have a friend who sits on the floor and uses both hands to hold a pencil with a rubber stuck on. I have another friend who types wearing a crown on her head with a long stick attachment she has a larger than normal keyboard. Other friends use what muscles they can control. It s often a matter of trying 3 -7 things and working out which is best.

  10. #30
    Dear Katilea first of all you have a very pretty name

    I use alot of leverage ideas to help me with my Quadrpleia
    Basically I compensate I sometimes use a pencil the eraser end to push buttons etc typing , I sometimes write with my mouth and draw pictures etc...

    My hands cramp up feirce so sometimes i'll even use a chopstick in my mouth to type

    One thing I love is also sitting on the floor watching tv or messing with computer
    I love building computers and I just do things differently

    Spasms stink ,,,,,,


    Sorry for my typos

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