Living with CP

LIVING WITH A CEREBRAL PALSIED PERSON The above is a strange concept if you do not have to live with it.  Having Cerebral Palsy makes you different.  That in itself is a challenge.  Not only for the affected person, but also for those who have to live with him or her. Most of the reactions to these people, are as a result of not understanding the situation.  Being the parent of a CP child throws one in the deep end.  Just as none of our children are issued with instruction manuals, these need special care.  Care for which we are seldom prepared. A disability is never chosen:  It is simply thrust upon you, more than often when it is least expected.  Example:  When a pregnant woman contracts e.g. German Measles at e certain stage of pregnancy, she is at least prepared for possible consequences.  Being prepared for that, she would then at least have some time to prepare, or to get information which can help her in future. In our case, we had no warning what so ever.  Niekie was born on the 19th of August 1992 by C-section after a normal pregnancy.  All went well, and we went home to start her life.  When she was 12 days old, it was clear that something was horribly wrong.  An emergency visit to our GP ended up in rushing to hospital.  She had a terrible temperature, and her entire body was stiff, pulled backwards.  Her eyes were up & backwards and her hands were clutched against her chest.  She didn’t make a sound. At the hospital, we were told that she possibly had meningitis (what a scary word!) and that spinal fluid would have to be drawn to confirm this.  But because her back was arched the way it was, a needle could not be inserted between vertebrae.  Alternatively, blood was taken.  This way of testing took days to produce a result. Meningitis Nisseria was confirmed. She was comatose for about 20 days.  She was then taken by ambulance to another hospital, where a CT scan was done.  Huge, clever, strange terms & words were used.  When I asked the Radiologist to explain in simple terms, I was told that there was zero brain activity.  When asking what that meant, I was told that she was brain dead. One of the radiologists though, probably seeing that I was in shock, recommended that I try to find a certain Neuro Surgeon in town.  I was to tell this doctor to do a VP Shunt.   This changed everything...... I would like to invite other parents of CP kids to add to this diary.  Let us share our stories, and hopefully this could make a difference to others.  This page, being a diary, will be under constant construction.  Please email me at 3prinsloos@vodamail.co.za with your queries, comments & contributions. This content was added on Tuesday, March 04, 2008.  Thank you for visiting this page.

An interesting question

March 11th, 2008. Since this page was added about a week ago, I have had unbelievable response on the subject.  I thought it wise to include some here.  The following subject is close to my heart: Jenny from Germiston writes: My daughter (17) has Cerebral Palsy.  For various obvious reasons, my husband & I feel that she should not have children ever.  She has the mental development of a 2-year old, & we have been told by experts that this can never improve.  We have found, however, that no doctor wants to help us by doing a histerectomy.  In the mean time, she is getting birth control injections every 3 months, which affect her in a bad way.  My GP says it’s my imagination.  Whereto from here? My reply: Jenny, we had the exact same problem.  Our daughter could firstly not handle the Monthly Menace, because she simply could not understand the concept.  Personally, I have found that she thinks on a different level.  (Of course!) If the injections are what I think they are, it’s NOT your imagination.  Niekie also got these.  Firstly, it makes you put on weight.  LOTS of it.  Secondly, it causes mood swings that cannot be managed.  This is especially bad in the case of girls with a low mental development.  Thirdly:  It causes depression, which no one needs.  Please note that I say this from the perspective of a parent.  I will never claim to be an expert.  We also went from doctor to doctor, none of whom were kind enough to show us the ropes.  Our child had her operation when she was only 13.  It changed our lives, and I strongly recommend it. Firstly:  You have to have your Gynae or GP refer you to a state hospital.  Patients under 18 have to go through this process.  The operation has to be recommended by (I think!) 3 doctors.  Our GP, my Gynae & the state hospital doctor did this for us.  Then we had to see a social worker at the state hospital, who had the final say.  Once we had the final go-ahead (the process took about 4 months), we found that at the time, no private hospital would provide a theatre for the operation, because Niekie was only 13, and there was no medical motivation for it.  Their opinion!  This was in January 2006, and I understand this has changed in the mean time.  Niekie had to have her op in a state hospital, which was a hairy experience in itself.  We did manage, however, to have her transferred by ambulance to a private clinic only hours after the op. Also, the surgery does not have to be that invasive.  In our case it was does vaginally, which meant that she was back at school within a week. Finally:  A fact that not everybody knows  -  The lower the intellect, the higher the libido.  Figure it out.  Jenny, thanks for making contact, and good luck! More matters to be included here soon.  Thank you for reading this far.

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