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Defining Quadriplegia

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  • Defining Quadriplegia


    I have a progressive Neurological Condition which I have been told has a prognosis of ending up quadriplegic and losing my speech. After reading these boards and other information on internet I'm now really confused about what the word means in general and what it means for me?

    I was under the impression as i guess many are that Quadriplegia only related to people who broke their neck and had no feeling or movement from neck down possibly on oxygen all time too.

    Since I have got online I have found the word also referring to people with Cerebral Palsy particuarly athetoid type with not enough control of arms so although they move they cant control them to do things like dress and feed themselves etc. Which is understandable as they too have no useful function in arms.

    Recently however, after seeing a movie called Murderball about the US Quad Rugby Team it showed men who seemed quite able in that they were still able to push themselves in manual chairs and showing them dressing themselves etc

    I have seen people mention on here they can still walk with crutches yet are classed as quads, so I'm really confused about what this means?

    If theres such a wide variation how will I know when I have crossed the point and become quadriplegic?

    I have co-ordination problems (ataxia) which affects my legs and walking, my bladder muscles and fine motor co-ordination. I have some jerky movements in arms particuarly when having to extend arms to reach out for something but they are better if fully supported or when using wrist weights.

    I can self propel on flat ground in lightweight chair and can sit up in it without having to be strapped in although i tire quickly. I am still able to live independently in adapted bungalow but struggle with getting about away from home without human assistance.

    Have I already reached the stage I would be classified as quadriplegic because my arms are also now affected? or do they have to be affected to a certain degree?


    (yorkshire, UK)

  • #2
    Quadriplegia is a word that describes a degree of impairment. It is not a diagnosis or a specific disability. It is also a term pretty much limited to use in the USA. Europeans and most of the rest of the world use the more correct term of tetraplegia (Greek: tetra = four, plegia = paralysis). Paraplegia is also Greek (para = two or related to, plegia = paralysis).

    While many people assume that these terms are used only when some has total paralysis of all four limbs, that is not the case. It just means that there is paralysis or partial paralysis that involves all 4 limbs to some degree. There are people often called "walking quads" (ASIA D incomplete with SCI) who have significant weakness or paralysis in their arms, but much less so in their legs...sometimes nearly normal in their legs. There are people who have paralysis that effects only their fingers, or only their fingers and wrists but who have good strong use of their elbows and shoulders. These are the people you saw in Murderball. For someone with a SCI, the degree of tetraplegia/quadriplegia effecting the arms is determined by the location of the spinal cord lesion in the neck as well as by the severity. This is why we use not just the level of SCI (C4, C6, C8, etc.) to describe the injury and impairment but also the ASIA categories to describe the severity or completeness of the injury.

    In addition, you can have tetraplegia/quadriplegia from diseases of the spinal cord or diseases of the peripheral nervous system and muscles (like muscular dystrophy or Guillian Barre Syndrome. You can also have it from certain types of problems in the brain including brain stem strokes, cerebral palsy, or bilateral strokes.

    So, if you have impairment/paralysis that includes all 4 limbs you technically could be classified as having tetraplegia/quadriplegia now. What is the diagnosis you have been given as the cause of your impairments?

    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.


    • #3
      i am a c7 quad, 23 years. gave birth to a son 6 yrs post, changed his diapers, fed him, worked as an aero engineer, drive my van, etc. don't fall for media definition of quadriplegia. they don't have a clue.


      • #4
        Hi guys Thanks for your replies

        Cass- thats great news about your son and you been able to do so much. I had to give up driving as my arms shook so much and I simply couldnt afford to pay upfront for more advanced adaptions to get a van I could manage to retake a driving test in.

        SCI Nurse - I was born with Congenital Hyothyroidism in 1969, it wasnt found until i was 23 months old so I had problems as a baby (floppy muscles, problems feeding me, couldn't sit up unsupported, walk or speak at 23 months old) but they went away after treatment, apart from epilepsy till age 7. Was fine then till 16 when i went deaf also caused by them messing with my thyroxine levels (Dr lowered it by 100mcgs after i switch to adult Dr at 16).

        I had no physical disabilities though until my early 30's. They are not sure why but it happened just after my dad died from cancer but my body seemed to not be converting T4 (thyroxine tablets) into T3 to feed body etc. They didnt relaise it was this for quite a while as I had multiple neurological symptoms and was tested for MS which they thought it could be for quite some time.

        Eventually they realised and got my levels right but by this time I had the symptoms 2 yrs and was already needing a wheelchair, had exhausting fatigue, balance and co-ordination problems in legs only originally and struggling to get words out. I was told the symptoms would go away after thyroid levels were right again.

        Despite some symptoms going- the fluctuating pins and needles and numbness were really bad (I once woke up unable to feel legs which scared the living daylights out of me though sensation had returned to heavy pins and needles by the next day). I was left with the ataxia symptoms which have progressed and now affects bladder muscles and fine motor co-ordination and speech. I have recently been given a Lightwriter Communication aid by an NHS funding committee to help medical staff understand me in an emergency, as they cant always get hold of a sign language interpreter and I cant physically sign as fluently all day, as I used to before I got ataxia.

        Despite these difficulties i still manage to live alone with my dog who i trained to help me around the house and use electric wheelchair/mobility scooter around my village which is very hilly.

        I was told years ago when I asked about my thyroid causing cerebellar ataxia that it could but 'was extremely rare and therefore unlikely in my case'. Last year I was sent a copy of report by the NHS guy to the panel to ask for funding for the Lightwriter for me and on it it says Cerebellar Ataxia caused by Chronic Congenital Hypothyroidism!! Seems I was right though no one has ever bothered to admit this to my face.

        Now suddenly I'm getting reassessments and visits from physio which I could have done with when it first started and she's talking about drugs for 'further down the line' and stuff. Whilst I'm glad someone finally believes me I cant help wondering if I had this help when it first started it wouldn't have got this bad, but she insist once these conditions start progressing there's not much they can do and it would have probably got this bad even with intervention at an early stage as they didnt know what they were dealing with because its so rare, none of them have actually seen a case of it before. (I live in small village in Yorkshire, UK)

        So I'm left frustrated and wondering what the future holds for me. I'm 40 this June and have been using wheelchair 5 years, though first symptoms started 7 years ago. I can still stand and do a few steps for transferring and about the house.

        I still have probs with temperature ie cant feel how hot something is unless its boiling hot and these symptoms were present in early days which I would first notice when legs would go bright red after getting in a bath then realising it was too hot after it reached a certain point up my back. I have split water from hot water bottle onto fingers too and it didnt feel boiling even though it had come straight out of kettle. So I would say I probably have reduced ability to judge temperature but can still feel the water. (if that makes any sense).

        Sorry its so long but I felt you may be able to help me understand it better as my own local professionals obviously have no idea what they are dealing with.




        • #5
          Message to SCI Nurse

          What is the Asia scale then? where would I be on it?



          • #6
            The ASIA scale is used to quantify the level and extent of spinal cord injury. It is not a valid tool describing other causes of paralysis such as MS. You can read more about it here:


            The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.