Announcement

Collapse
No announcement yet.

Coping with becoming 'Quadriplegic'

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    #16
    I have choreo-athotosis/dystonic forms of CP, the dystonic form of cerebral palsy a crack in the spine c1-c4 everything below c4 to somewhere in the region of L9 is arthritic. At the joint of c4-c5 the bone has disintegrated to the point that the spinal cord is slowly being crushed.

    Comment


      #17
      btw the dystonic form of cp is progressively getting worse and so is the arthritis.

      Comment


        #18
        wow, I didn't know CP was progressive! My mobility problems didn't start until I was in early thirties. I was just deaf before then but didn't really feel disabled. Maybe as I was transferred straight to a deaf college (as was only 16) where they saw themselves as more of an 'ethnic minority' who just used a different language rather than having a disability like someone in a wheelchair.

        I didn't really feel disabled myself until I was struggling to do simple everyday things from a chair in a tiny flat. Mine couldn't be adapted so housing assoc just moved me into a new adapted bungalow they had just built and put someone else in my flat who didn't need any adaptions to it. Guess it was easier for them that way too.

        I have jerky involuntary type movements which are unusual in Ataxia, it is more usually a constant tremor which I don't have, but I definitely have the ataxic gait. They aren't sure whether my 'twitches' are mild dystonia or myoclonic jerks as myoclonus is related to epilepsy which I have had in the past. They aren't there all the time only when I am consciously trying to do something like typing.

        I'm guessing you may have involuntary movements of arms how do you manage computer and trying to do other stuff like dress and feed yourself?

        I'm always looking for advice for the next stage along on what maybe useful for me.

        Thanks for answering

        Kati

        Comment


          #19
          I need surgery on my neck- the doctors say they would like to take a graft from my hip and then poke the spinal cord back into the bone casing, its looped out between the c4 c5 vertebra, and is slowly being crushed between the vertebra,(hence the Pain and loss of function), but they can't keep me still enough long enough to heal(6 weeks to 3 months and they've said no to putting me in a coma for that long), so I live in limbo.

          Comment


            #20
            Btw choreo-athetosis an the dystonic varieties of cp are progressive. I can't be still and conscious at the same time. I am awaiting the stillness of death.

            Comment


              #21
              what you use for computer access?

              Comment


                #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.

                Comment


                  #23
                  Hi

                  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.

                  Kati

                  Comment


                    #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.

                    Comment


                      #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.

                      Comment


                        #26
                        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.

                        Kati

                        Comment


                          #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.

                          www.worldonwheels.ca

                          Comment


                            #28
                            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.

                            Comment


                              #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.

                              Comment


                                #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 ,,,,,,

                                Sincerely;
                                Gypsylady

                                Sorry for my typos

                                Comment

                                Working...
                                X