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Thread: Coping with becoming 'Quadriplegic'

  1. #11
    Senior Member Katilea's Avatar
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    Hi Tooley

    Thankyou for answering.

    Congratulations on getting back to living independently. When you say 'unassisted' you mean are able to use your arms/hands enough to dress and feed yourself?

    I think this will be hardest part for me as I have always been very independant, but some people I know consider themselves as living independently, even though other people do these things for them but they organise their own care and make their own decisions about what they want to do that day etc.

    I'm not sure at this stage whether I can accept that definition of 'independent' as the word to me means been able to do everything for yourself without assistance.

    I think when you know its coming you are always trying to stay one step ahead and prepare for the next stage before it catches you out so you are winning rather than the condition.

    I have thought of learning how to use a headmouse or mouthstick so I can type as fast with that by time I get to stage my hands wont work at all, but some family members think I should keep using my hands for as long as possible for everything and if I switch to headmouse or mouthstick too early I will lose use of hands quicker.

    At one time, I was going to get a man to come and demo Eye gaze on a Dynavox (my speech is also affected) cos I felt I needed to know if it would be a future option for me and I felt really low. but then the iPad details were released and I'm a Mac fan, always wanted an ipod touch but screen too small so this gave me new optimism that I'd be able to use this not just as iPod but also as communication aid via Proloquo2go and as jumbo touchscreen TV remote (solve the issue of struggling with small buttons on tv remotes)

    I seem to get lot of ups and downs sometimes to point I think if i got something like cancer I wouldn't tell anyone until it was too late then I wouldn't have to end up been totally dependant on someone, but then other times I think if I can just find an alternative way to do everything and find out how other quads manage I might be able to cope that way too.

    Kati

  2. #12
    Senior Member tooley's Avatar
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    Quote Originally Posted by Katilea View Post
    Hi Tooley

    Thankyou for answering.

    Congratulations on getting back to living independently. When you say 'unassisted' you mean are able to use your arms/hands enough to dress and feed yourself?

    I think this will be hardest part for me as I have always been very independant, but some people I know consider themselves as living independently, even though other people do these things for them but they organise their own care and make their own decisions about what they want to do that day etc.

    I'm not sure at this stage whether I can accept that definition of 'independent' as the word to me means been able to do everything for yourself without assistance.

    I think when you know its coming you are always trying to stay one step ahead and prepare for the next stage before it catches you out so you are winning rather than the condition.

    I have thought of learning how to use a headmouse or mouthstick so I can type as fast with that by time I get to stage my hands wont work at all, but some family members think I should keep using my hands for as long as possible for everything and if I switch to headmouse or mouthstick too early I will lose use of hands quicker.

    At one time, I was going to get a man to come and demo Eye gaze on a Dynavox (my speech is also affected) cos I felt I needed to know if it would be a future option for me and I felt really low. but then the iPad details were released and I'm a Mac fan, always wanted an ipod touch but screen too small so this gave me new optimism that I'd be able to use this not just as iPod but also as communication aid via Proloquo2go and as jumbo touchscreen TV remote (solve the issue of struggling with small buttons on tv remotes)

    I seem to get lot of ups and downs sometimes to point I think if i got something like cancer I wouldn't tell anyone until it was too late then I wouldn't have to end up been totally dependant on someone, but then other times I think if I can just find an alternative way to do everything and find out how other quads manage I might be able to cope that way too.

    Kati
    I got lucky, my upper body was spared, I've got everything north of and including my top 2 abdominal muscles. My hands are weak, but all sources tell me they will return 100%. I'm taking an extended holiday in the meantime.

    Independence can mean many things... like you said organizing your support staff, detailing to them what you need or want today, etc. I am privileged to live somewhere where if I need them they are a phonecall away (in-house) or when I don't I lock my deadbolt and crank the tunes. It's been 3-1/2 months without a soul except cleaning lady (sister), family and friends, but none of them in a homecare role. I have a roll-in shower and have mastered my life here in my apartment. Everything takes more time and I could complain about it like some people on this forum, but every breath I take is a blessing. When my lease expires where I'm at now I'm confident I can live completely independent - it's all in the setup of your living space.

    I completely understand about the acceptance of the definition of "independent". In rehab we had "lifestyle" meetings where they told us that you can still feel independent with a full-time aid. My refusal to listen to that idea has served me well. Some peers of mine (ppl I rehab'd with) think I'm insane. I think it's insane for a grown person not to do as much as they're capable of. My one friend inparticular 10 months post-SCI is more than able to wake & cath himself in the middle of the night yet still has nurses do it. His argument is "why should I have to wake up?"

    As far as your family telling you to type manually and use your hands for as long as you are able, I think they are absolutely correct. You could have all the software/hardware for a back-up if you're having a bad day and still want to communicate over the `net. Just don't quit using your body because something else is easier. "Use it or lose it" is a mantra that many active wheelchair-users say. That being said, don't over-exert yourself- know your limitations. I got approved for a government-funded power chair, but now feel like I don't need it at all. I will be driving within the next couple months, with a car a power chair just seems redundant (not to mention a huge waste of real estate in my apt)

    I may not be the right person to be conversing with, I hardly consider myself handicapped. More like super-powered. But I feel like as long as we all keep our head in the game we`ll all make it through. Keep your head up, when you get discouraged accept the help you need. It will get easier, even if it feels like your body hates you or wants to give up.

    Before my injury I would listen to U2`s song Acrobat when life got me down... Now I just hum it and quote the lyrics to myself. It got me over alot of humps, physically and emotionally.

  3. #13
    Senior Member Katilea's Avatar
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    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?

    Kati

  4. #14
    OK, my disabilities are progressing. I am quadifying. I have to maintain what use i still have in my left hand, went to the hospital's hand clinic, earlier this year asking them to chop my right thumb off, I rarely use that hand to do much with its basicly useless and thumb was hurting, I have a custom made splint now as a last stand between keeping thumb and having it chopped. I live in the same place I have lived for the past approx 25years, had all cupboard doors and internal doors removed, had bathroom and kitchen remodelled ramps installed to keep me here. Occupational therapists and physiotherapists have forbidden me standing let alone walking, as a health hazard (I fall often, last fall had me in emergency getting 5-6 stitches, a week ago, happened while transferring to the bed) I went from 7 hours of care a week to 17. I have pain everywhere. I am loosing sensation in my left hand, bladder and bowels. I watch over my body disintegrating, this process of losses is still not complete. I will become a quad eventually, if I live long enough. The bit by bit process is a bit of a pain in the arse, it means that everything gets re-evaluated re assessed and rearranged every 6-12 months to fit my disability. It also means I have to re fight every battle every 12 months to get more services and more stuff. Coping with a steady stream of change is wearing.

  5. #15
    Senior Member Katilea's Avatar
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    OMG! I so get what you mean! Your first person on here who seems to have something similar.

    My disability has been changing, it seems to have a 18 months-2 year cycle so every couple of years a new symptom arrives to cope with.

    Mine started with splitting headaches down one side and sight disturbances that lasted about 4 months then vanished, They said it wasnt stroke and checked for MS, was ok for 3 months apart from back pain then woke up one morning feb 2003 was so stiff and could barely move, It was freezing outside and snowing but still something didnt feel right I couldnt feel legs properly either so was admitted to hospital for emergency MRI. Think they were looking for MS or guillian-barre? (not sure if I spelt that right).

    The found no lesions but I was left with very ataxic gait and difficulty getting my balance from sitting to standing. Luckily the headaches and sight disturbances never came back so far which i have been very relieved as i been deaf since I was 16 and rely on my eyes and lipreading. I could also sign and speak but these are also becoming more affected after 8 years and my arms and speech more affected.

    Like you said, it is incredibly frustrating because just as you get used to one level of disability the next one kicks in! Trying to stay one step ahead of it is a real challenge.

    What progressive condition do you have?

    Kati

  6. #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.

  7. #17
    btw the dystonic form of cp is progressively getting worse and so is the arthritis.

  8. #18
    Senior Member Katilea's Avatar
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    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

  9. #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.

  10. #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.

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