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Coping with becoming 'Quadriplegic'

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    Thank you to everyone who has answered.

    I liked water colour painting but having problems using my right hand for long, I think it maybe bit of writers cramp I start to do a few words ok then it just goes into an illegible scribble, if i can get it to make a mark. I can still however still manage just my signature with that hand which is useful as I get a lot of stuff delivered which often needs a signature.

    I am learning to do my signature with my left hand too, I wasn't naturally left handed but have been practising and can write a few words.

    I dont think trying to write with both hands will work as right hand seems to lock up when I try to use it to write.

    The pencil with rubber on end is good idea, don't think I have any but I'll have look on ebay, I use bottom of my hand as its in a fist but you tend to accidently hit other keys at same time and if you have keyguard on you can't get knuckle of little finger down onto key.

    The strap gave me an idea (thanks for your video christopher) and I have found a weighted cutlery holder on a UK disability site which could possibly be adapted to hold pencil, stylus, pen as well etc. I thought the extra weight may help keep hand steady without having to wear weighted wristbands all the time.

    I have Macbook I use in bed and iMac in office, it was wider spaced keys than a windows keyboard and also got word prediction etc on but still when your aiming for one key and your arm seems to have a life of its own it can take several attempts just to hit one key containing the prediction you are after.

    Its kinda like someone holding your arm and just as you go to hit key you know you want, they start shaking your arm from left to right as you are trying to hone in the key.

    It is very frustrating as I used to be able to touch type at over 200wpm.
    I found its better if arms are fully supported and I can actually type better laid in bed semi reclined as arms are supported by bed covers and bottom of laptop as opposed to sat up at desk where there is nothing under my arms as I move from joystick to keyboard and bring arms down to keyboard.

    As I have been deaf since age 16 I also used sign language, which was great at uni etc where interpreters were readily available but in a small village in yorkshire no-one else signs and as my arm movements are becoming more affected its getting just as hard to sign is it is to speak. especially the signs which take more fine motor control like finger spelling. Again this was something I did so well when young that other deaf students at uni didn't realise I wasn't born deaf like them, so kinda losing two methods of communicating and losing contact with deaf community as well as struggling to communicate with the hearing world.

    Life does seem endlessly frustrating at the moment but I do keep trying to find ways.

    I'm currently hoping to get an iPad to put Proloquo2go on (text-to speech) so I can set it all up whilst I can still type, so one large icon will activate an whole sentence so for future use if I need to instruct someone else how to feed my dog or tell a PA what jobs I need doing, it will be easier than having to type every sentence out word by word (even with predictions).

    I can also make the keys bigger than they are on Lightwriter for using bottom of my fist, also hoping to set that up as a jumbo touchscreen remote for my TV, DVD player etc. I am also considering getting the dock with keyboard so I could use a mouthstick easier to setup new pages (in future) and put new phrases in etc.

    For now I might try the 'pencil in weighted utensil holder' idea as that idea would work better with keyguard which may make things easier.




      Concentrating on a task is a problem. It is strange how often I mess up, or have more spasms, take longer, if I concentrate on doing something. I now concentrate on not concentrating on what I am doing, it works better than actually concentrating on what i am doing. Distraction works well.


        "I now concentrate on not concentrating on what I am doing, it works better than actually concentrating on what i am doing."

        you lost me! how do you concentrate on not concentrating?

        is it related to tension? I find it easier to type semi reclined in bed I assumed it was cos arms had more support and gravity played a part whilst sat upright in a chair with nothing under arms as they move.

        Maybe its just cos body is more relaxed in bed and sitting upright in chair your brain is also working on keeping your body balanced whilst moving your arms to type?


          Originally posted by Katilea View Post
          Thank you for answering.

          I was moved into adapted bungalow so I also have a roll in shower with self propelling shower chair and kitchen hob etc are wheelchair height with leg space underneath.

          I live on my own, my parents passed away some years ago and my younger brother has his own life and wife now. Its just me and my dog. I was always determined to be as independant as possible and didnt want to have to give up Inca (she was only 18 months old when I had to start using wheelchair) so I got mobility scooter for walking her, thats had to be upgraded and got leccyc hair for back up as its all hills around here. I wouldn't even be able toget to shops for milk if didnt have leccy chair.

          I treid learning adapted car but my arms shook violently trying to hold onto sterring wheel with one hand and use other for brake/accelerator, we have to pay for adaptions up front here even though we can get car through the 'motability scheme'. I didn't see point of spending thousands if I wasn't gonna be able to drive in another few months so I dont have a car.

          When I go out with friends/family I have a Da Vinci chair it folds small with legs go under seat (same as quickie revolution) so fits in her small boot. I use Nu Drive levers (similar to wheelchair widgits in US) these make it much easier for me to brake as am losing co-ordination of fingers to feed wheel rim through and slow down. Was always trapping fingers and had bruised hand for few months at one point.

          Anyway best get off its 10.14am and still in bed on laptop.. My doggy is prodding me ask to ask when we going to park.. lol She definitely keeps me going but I do worry how I will look after her. I keep imagining my worst case scenario will happen that others will decide I cant look after her and take her away and put me in a home.

          Does anyone esle get these dark or silly thoughts about whether there pets/children be taken away and they wont be able to do anything about it? or whether they'd have a better/easier life without you?

          Sorry I am a little late in joining this discussion, but yes, I do worry about decisions that might be made for me instead of on my behalf. I have a C5/6 injury, so I am fortunate that I do not have a progressive disease, although just getting older is progression over time. I try to banish my fears as best I can, and on a practical level I have made decisions that probably wouldn't make a lot of sense to some people, but they give me some degree of feeling safer and more in control. One of those is to say no everytime my primary doctor suggests getting me some help in terms of a PCA and a housekeeper. Part of it is that I do not want people pawing my stuff, or me either, for that matter. It makes things take a lot longer than they might with some help, but it also means I am pretty much out of the system for as long as I am able to maintain function. I know that someday I will have to give in to the need for help, but I am not doing it one second sooner than needed even if it might free up some time for enjoyment. If it means my dusting is sometimes at too long an interval (write your name on my top shelves!) I can live with it, and just yesterday spent some bucks for a combination dry mop with an attachement for dusting. Anyone reading this who has aides please don't think I am saying anything negative about that. In some ways I probably envy that situation, and it is my own history that makes me too leery. Trust is not something I give easily, although occasionally I do, and just recently got burned by doing so. I am not exactly retreating into a cave about it, but it hasn't helped my feeling of being trusting either.


            Concentrating on not concentrating= concentrating on everything else but, do the job, redo the job fixing up anything you messed up.