Sunday, February 16, 2014

February Meeting


We discussed our plans for the UW's Brain Awareness Open House event on March 4th.  We will be meeting several hundred students from Western Washington schools, which often includes some home schooled kids, to talk about the brain.  Our exhibit is focused, of course, on hydrocephalus.  We also tend to talk about acquired hydrocephalus through brain injury.  What little most people know of hydrocephalus rarely includes the realities of brain injury and acquired hydrocephalus.  In coming years I'm hoping that we are able to have literature about CTE, which right now is talked about mostly as it relates to concussions and sports--specifically football, however it is increasingly being found in cheerleaders and others who have participated in youth sports & who suffered even one concussive event.  That can also apply to veterans.

We talked among ourselves about CTE and acquired hydrocephalus--mostly as it relates to young folks.  We often talk among ourselves about the older population acquiring what used to be referred to as the spontaneous form of hydrocephalus, where a head injury or concussion wasn't involved.  Now it is referred to as Normal Pressure Hydrocephalus (NPH).

Unfortunately, as I've mentioned here before, NPH is all too often mistakenly diagnosed as Alzheimer's, Parkinson's or some other form of dimentia, which only delays critical treatment that can minimize the damage caused.  But that needs to happen in a timely manner to be most effective.  We've talked at meetings about people we've seen who have many of the indicators of NPH, but who have been diagnosed with Alzheimer's, Parkinson's or a "Parkinson's-like" syndrome.  The shuffling walk, downward look, along with signs of memory loss can all indicate NPH.

We also talked about members who live far away and are unable to make many meetings & often don't attend the Brain Awareness event, but who have in the past.  We would love to see them on a more regular basis & see them at the event in March.  Personally, I'd like to see some articles in area publications profiling a few of our members, in general, as part of our outreach and because these are folks who have very compelling stories to tell about overcoming obstacles.

I sent out notices to the media about our involvement with the Brain Awareness event, hopefully we'll be seeing some of them there or at least hear from them in the coming weeks.  Again, a few of our members have said they would be willing and interested in telling their stories as a way to generate awareness of the condition, as well as the group.

We had the pleasure of a conference call with one of the group's friends who lives on the east coast.  It is always great to talk to friends and members of the group who are far away, but who still want to participate.

I did hear from Medtronic, the shunt folks.  We will have a rep at our booth next month.  It will be great to have Dave back for another year.  He shows the kids how a shunt works and explains why it is used.  Our members can talk about the history of the shunt and Dave can talk about the most up to date technology in treating hydrocephalus.

Hopefully, our surprise for the exhibit will happen.  I'm crossing my fingers.

Looking forward to the March meeting where we can talk about the event and start planning for 2015!  I'm also hoping that we'll have pictures to post here & on our members' Facebook pages.

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