Cerebral Palsy
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opposing opinions from specialists about cerebral palsy in adults

Katherine HaywardKatherine Hayward Member Posts: 74
edited September 2014 in Cerebral Palsy
Hi, I'm new to the forum. I have quadraparesis CP and hydrocephalus (with a VP shunt). I also have eyesight difficulties, and am reliant on an electric wheelchair to get around. I have now seen the same neurologist on two occasions (2008 and recently). who has been not interested in my situation, and dismisses it as a "functional disability". I have heard the "disabiity and age" argument, but am not sure about it. I also know some specialists refer to CP as a functional disability as it affects the way a person moves, but that should not be grounds for writing a misleading report using terminology that confuses people. I was born with the disabilities I have, 3 months premature. The specialist I saw was very unhelpful during my last visit and suggested I go hungry if I can't feed myself (weak grip and difficulty lifting my arms make this very difficult). Worse still, My Dad made me go hungry recently on 2 occasions. I felt neglected and bad that he'd followed through on such a suggestion. Fortunately one of my carers arrived just in time (I now have carers 4 times a day). On both occasions, the specialist, talked to me and did not so much as check my reflexes. I think to make a diagnosis you need tests. My fiancee and friends agree. The specialist here has completely dismissed my version of events, and views. Even the view of Spanish specialists (I lived there until recently). He thinks they are inexperienced there. My neurologist there is head of her department, and the epilepsy department and works at another hospital).All her tests prove its my CP. My shunt is working fine. The specialist here has insinuated that my fiancee helps me too much with things. I do what I am able to do, which may not be much, but I do it. I take Baclofen (40mg) and Tramadol (50mg) as I also have severe pain and some scoliosis. I know Baclofen is prescribed for CP, and it at least helps me in that people can move me easier when doing physio or just generally. I was actually advised by a physio here to take it for that reason, and obviously as its a muscle relaxant. It clearly states those things in the leaflet that comes with the medication. The specialist here has said physio/occpuational therapy will not do any good, and neither will taking medication. My specialist there has done CTs, MRIs and does neurological checks every time I see her. I also suffer from muscle spasms and convulsions and urinary incontinence. My parents don't see themselves as being able to care for me, and this is causing a rift between us. I feel the service I'm getting is not professional, and in fact I was offended by the neurologist's attitude. He said no one would help me at the hospital so it was not worth getting a second opinion or changing specialist as they'd all agree with him!. The only documented conditions in my entire medical history are what I was born with, but he was suggesting chronic fatigue syndrome which you cannot test for anyway. He's written reports as follow up from the visits which no one understands (even the neurologist in Spain, despite reading English perfectly). He has never once got in touch with her or her collegues, and not seen the most up to date parts of my history. She is lovely and does everything she can to help me.
I've been in a chair for the past 3 and a half years. I'm currently in touch with PALS associations at local hospitals. In 2007, an MRI was done on my spine as they thought I had a compression fracture, but all they saw was the scoliosis I've had for years. No other new illnesses or disabilities were found.
I've been advised to look for a specialist who has alot of experience in treating people with CP and hydrocephalus, and likewise for physio and occupational therapy. My GP is also not being helpful.
I'd be interested to know if anyone else has had a similar experience and what they advise.
Katherine

Replies

  • LizzieDLizzieD Member Posts: 4
    Hi

    Haven't anything very useful to add I'm afraid. I am the mother of a young woman with CP who unfortunately has communication problems as well - and I am just posting to offer you my sympathy. I don't, unfortunately think it is at all unusual to come across this kind of indifference. I have found it well nigh impossible to get anyone to be very interested since my daughter has been an adult. It is hard to know whether to persist in the hope that you might find the right kind of help, or just give up.

    Sometimes, it does go in cycles as the NHS budget gets more or less strained.
  • Katherine HaywardKatherine Hayward Member Posts: 74
    Hi Lizzie,
    Thanks for the reply, and the sympathy!. I agree with you that the indifference makes things really impossible. I've decided to just do what I can like going on friends' advice and experiences, using forums like this, and contacting PALS services at local hospitals.I've got varying advice from them about my "rights" (despite being British through and through!) and the estimated time it would take to get a second opinion and the long "process" I'd have to go through. My GP could not even inform me further about the process when I asked him.
    I'm hearing alot about the budget cuts from people, and am concerned about all the effects of these on disabled people.I guess I'm lucky in that I have supportive friends,although they have lived their own experiences and sometimes struggle to offer advice. My family is often a bit indifferent. And of course, I have the support of my fiance, although he's still out in Madrid. I know what you mean about not knowing when to give up or whether to keep going though! its alot for me to have to take on board. What did you do to try and make people more concious of your daughter's situation? I get the feeling my parents would rather not "rock the boat" but I feel I need more support from them. It's hard to know what the next step will be, but I don't want to give up! If it's ok, I'd like to stay in contact with you.
    Katherine
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