Monday, May 19, 2014

May 2014 Meeting Summary

This month's meeting was interesting.  We discussed hydrocephalus history and plans to do more research on various aspects of the subject.  The topic brought up the issue of the 'cure' that so many newer parents seem to have an obsession of.  I've brought this up before, along with my views, which are often shared by others with the condition.  It isn't that we are against research into hydrocephalus, just that the idea that we all need to be 'fixed' or that we are all 'suffering' and need some one-size-fits-all approach to ending the condition isn't where we feel all energies need to be trained on.

To see where hydrocephalus, and its treatment, have been and where we are today, it is why we are grateful for the strides that have been made.  I recall one of my neurologists saying that if the math portion of my brain hadn't been damaged by the hydrocephalus, I would have made a good doctor.  However, if I didn't have hydrocephalus, then I wouldn't have the hyper-awareness of my brain, or my interest in how the brain works!  I also wouldn't have any interest in the possible genetic aspect of my hydrocephalus.  As I've said before, if I didn't have this condition (it isn't a disease) I would think of my brain the way most people think of their big toe.  I wouldn't think of it, unless I injured it or had on a tight fitting pair of shoes.

I also remember being told, by a new parent to the hydrocephalus experience, that he couldn't understand why "you people get so upset about research".  Actually, he also said that I was against research and implied (many times) that we adults with hydrocephalus are incapable of understanding the complex issues around the condition.  As though those of us, adults, who have had a lifetime of experience in dealing with various aspects of the condition don't know what we are talking about!!  Then again, he and his wife said that they didn't need to hear from parents with over fifty years of experience of having 'kids' with hydrocephalus.

Exploring various aspects of hydrocephalus history is going to be interesting.  I'm looking forward to it.

Another subject, which I want to bring up at next month's meeting, is this discussion of Ms. Clinton's head injury several months ago and Karl Rove's opinions about it.  He seems to conveniently forget that Ronald Reagan had a head injury after falling from a horse.  He also was in the early stages of Alzheimer's when in office.  No one said 'boo' about that then.  He wasn't saying that the President had no business being in office.  Sorry, to those who don't believe that President Reagan didn't have Alzheimer's until after he left the White House, but the medical profession has stated in more than one source, that people with Alzheimer's have the disease for a decade or more prior to definitive diagnosis.  That would have put President Reagan smack in the middle of his time in office.  There are those who also question whether the fall from the horse and subsequent head injury didn't leave him with possible hydrocephalus, not as a result of the Alzheimer's, but because of the fall.

The idea that because someone has had a head injury that they are suddenly incapable of decision making is not based on fact.  People go on after head injury to have full lives, with the ability to make decisions remaining in tact.  In fact, most people with head injuries go on to drive, raise families and enjoy their lives without having their mental health or abilities being in question.

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