Tuesday, February 25, 2014


Brain Awareness 2014 Event

Hard to believe that the UW's Brain Awareness (BAW) Open House event is just a week away!  We will be having a booth there with lots of information and 'stuff' relating to hydrocephalus--including members of our group.  We are looking forward to talking with parents, teachers and Western Washington students (grades 4-12).  It is our big, annual outreach event that we always look forward to doing.
I just got a huge box from Medtronic and a package from the National Hydrocphalus Foundation (NHF).  Thanks in advance to Leanne, Carli & Dave at Medtronic for their assistance.  Medtronic has been part of our booth in years past, unfortunately, they won't have a rep there this year, but looking forward to 2015 already!  Thanks, in advance, too to Debbi Fields at NHF for sending back issues of the newsletter & the pamphlets.  Thanks, also, to Sports Legacy Institute (SLI) for their literature to include in our exhibit.

Still lots of work left to do, although I'm already getting things started for next year.  I'm hoping that our 'surprise' will come through for this year's booth.  If not, we'll plan on it for 2015.  I'm hoping that we'll also have pictures from the event to post here.
We're looking for corporate sponsorship to make some ideas for 2015's event happen.  If anyone knows of any companies or individuals with an interest in brain issues, generally and hydrocephalus, specifically, please email me & let us know.  As always, I do encourage those with an interest to also attend one of our monthly meetings.  Drop ins & kids are welcome.  We welcome anyone with an interest in brain issues and hydrocephalus.
We will be spending part of the March meeting reviewing the open house event, but otherwise, we have open discussions.

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.

Monday, February 10, 2014



Hard to believe that it is February already!  This Saturday will be our second for 2014 and hopefully there will be a lot of new & familiar faces around the table.  It will also be our final meeting before the UW's Brain Awareness open house event, March 4th.

I'm looking forward to this year's Brain Awareness event.  Our booth should be very interesting & we will be meeting lots of Western Washington state kids (grades 4-12) during the four hour event, as well as parents & teachers.  It is always a fun event for us.  I'm hoping that a surprise I've been working on for awhile will happen at the event this year.  Crossing my fingers.

As always, I'm trying to get the meeting & the group listed as a resource on a number of fronts.  Not hearing back from a lot of people, but what else is new?!  It would also be great to find some funding for some aspects of events, like Brain Awareness, to help us do more every year with our booth.

It seems that with every new development in the CTE & brain injury stories, we find a connection to hydrocephalus.  Adding to that, the Normal Pressure Hydrocephalus (NPH) issues and we are finding more & more that includes hydrocephalus.

I am still shocked that there is even talk out there (some supposed scientists included) saying that Shaken Baby Syndrome isn't real.  Huh?!  The basic facts are pretty clear, the brain & spine of a child aren't developed yet & aren't strong enough to endure shaking.  Add to that the fact that the interior of the skull is rough & jagged, not rounded & smooth like the exterior & it is a disaster ready to happen.  The soft brain tissue was never meant to bang against the interior of the skull.  Even slight bruising or bleeding can cause serious, long term damage--particularly in children.

CTE is, in so many ways, the same thing.  The brain was never meant to make contact with the skull's interior--ever.  While someone may be functional after a blow to the head, it doesn't mean that there hasn't been any damage.  Some of that damage may not show up immediately, or even for years.  While helmets are giving a false sense of security to parents, coaches & players--of all ages, there is a sad reality that is increasingly difficult to ignore.

I will admit that it is a bit frustrating to see stories being done on the news about Alzheimer's & Parkinson's, with no mention of NPH--which is all too often missed because medical professionals mistakenly diagnose 5-15% cases of NPH as either Alzheimer's or Parkinson's.  NPH is treatable, especially if found early!  

I recently saw a tv interview with a victim of abuse.  As a child she had been slammed, head first, into a floor on several (?) occasions.  The interviewer attributed tremors & physical 'ticks' to the emotions in telling her story, but I was curious about the possible damage done to her head & spine with this abuse.  I noticed some of those tremors & ticks when she wasn't talking about the abuse as well, just more subtle ones.  Just an observation.

Hope to see everyone on Saturday.  For potential newcomers, we meet from 12:45 pm to 3:00 pm in the Casey Conference Room at Swedish Hospital's Cherry Hill campus (17th & E. Jefferson, Seattle).  Drop ins & kids are welcome.  We also welcome parents, families, caregivers & those wanting information about the condition of hydrocephalus, as well as those (of all ages) living with the condition.