Hi, I have been disabled for over 47 years, I had encephalitis when I was six, it left me visually impaired, epileptic and paraplegic. I have never been told much about it but I was quadriplegic when I recovered from my encephalitis, I have regained the use of my upper body but not my legs. I have been experiencing problems for some time with water works, bowel, and numbness in lower back and legs. I was talking to my niece last week who herself has various health problems, she mentioned couda equine syndrome, I had never heard of this, I looked it up on google and found that all the signs fit. I read more about it, over the years I have often been referred to as paraplegic and have heard the term paraplegia, I knew very little about this, I thought it was something I had in the past but not now. On reading more about paraplegia itself I now realise that most of my health problems including my visual impairment are a result of my encephalitis which caused me to have paraplegia and thus am visually impaired and have other problems. Question, after 47 years, why have i only just worked this out, nobody has ever explained it to me, yes I could have worked it out sooner but why now? Why have I never had an assessment of my paraplegia, this has never been investigated, as it is an integral part of my health, why hasn't anybody reviewed it I was in hospital a few months ago, one of the nurses told me I am not paraplegic, it made me wonder exactly what my classification would be, When I phoned the spinal injuries association the other day, they asked me what my spinal injury category would be. When I had the encephalitis, it did nerve damage and I am unable to use my legs properly so there for there must be some kind of category which I would fit in to, as it damaged my nerves to my legs, there must be some kind of spinal damage other wise I would be walking normally? I really don't understand why this has been over looked for so long. I have done a self referral to the local neuro physio team, I am hoping they can refer me to a spinal unit or specialist so I can get this reviewed.
I have noticed over the last couple of years more weakness in lower body, numbness around genital area, pain in back, arms and hands. I also have osteoporosis, again I have not had any kind of a follow up to this, just give me the drugs and let me get on with it.
As for the paraplegia, how has it been neglected over the years, is it really down to me to to work it all out for myself, what support should I have had for this condition over the years? I need to ask a lot of questions and that is exactly what I am going to do! Watch this space.
