2016 UW Brain Awareness Open House

2016 Brain Awareness Open House


Another successful year's event!  Thanks to all who attended (Dave, Frank, Kim & Bobbe), as well as the students, parents and educators.  Everyone I spoke with had a good time.

We had lots of interest in the shunt display, thanks to Dave from Medtronic.

There were a lot of inquisitive kids out there, not just interested in the 'free' stuff we had to hand out.  It was great talking with kids who really wanted to know about hydrocephalus and what it was like to live with it.

Looking forward to 2017 already!

Preparation For Brain Awareness

The booth for Brain Awareness is coming together.  It promises to be another rewarding year.  We got a box from the Hydrocephalus Association (HA), which is always helpful.  We have at least one rep from the shunt manufacturer, Medtronic attending, plus members of the support group.

The estimate is 700 or so kids (grades 4-12), plus parents and teachers.  Our exhibit should be full of information and lots of information from those of us living with the condition.

I'm also bringing the educational doll along.  This year the doll has a whole new wardrobe and a stroller, so transporting it will be much easier than previous years.  It is always a great conversation starter, wherever it goes.  We've started dialog with police officers, social workers and lots of others seeing it.  It DOES look very real and has been mistaken for an actual baby!

We will be having our monthly meeting on the third Saturday of March, which is the Saturday after Brain Awareness, which will be nice.  I'm sure that we will have a lot to talk about.

February Update

We wanted to thank the Hydrocephalus Association for sending us material(s) for the March event.  Brain Awareness Open House at the UW will be March 17th, from 9:30 am to 1:30 pm and we are expecting several hundred kids (grades 4-12) during the one day gathering.  There have been so many new brain oriented stories and ideas in the news over the last year, there is a lot to talk to them about!  Zika is just one of those.

We would also like to thank, in advance, Medtronic, for their annual participation.  It is always a pleasure to work with them on our table.

I would personally like to thank our members who come every year to talk with the kids and adults about living with the condition of hydrocephalus.  It is always great to see faces we don't always see because of distance, on a monthly basis.

As always, we are constantly looking for ideas for this year's, as well as the 2017, event(s).  I've seen a lot of great things online, but our budget wouldn't cover them.  The brain version of popular games, cups, mugs, tee shirts, etc.  All fun ways of opening up discussion about something most people don't give a second thought to.

Questions About ZIKA

I'm sure that we'll be discussing ZIKA at the February meeting.  ZIKA is the mosquito-borne illness that is primarily in South America now, but has been found in the US.  The illness is particularly dangerous to pregnant women and their unborn children.  It is known to cause, among other things, serious birth defects--including microcephaly.  It can impede brain development in unborn children.

So little is known about this illness, but it IS getting much needed attention.  It raises a lot of questions.  Could this impact the number of children born with other brain issues--like hydrocephalus?  I'm sure that we can come up with other questions before the next meeting!

New Day NW/King5

How disappointing, on Wellness Wed. of New Day NW, their 'expert' on aging and brain health failed to mention Normal Pressure Hydrocephalus (NPH).  Since treatment is too often delayed because of misdiagnosis, commonly mistakenly diagnosed as Alzheimer's or Parkinson's.  Hydrocephalus, while not curable, IS manageable and treatable.  It isn't an automatic death sentence.

I've been hoping that a show, like New Day NW, would embrace hydrocephalus and showcase some of our members who have overcome great odds to live very full lives with their condition.  Unfortunately, hydrocephalus remains one of those conditions (not a disease) that is kept shrouded in mystery and secrecy.  We are constantly having to blow myths and stereotypes out of the water.  One of them being that we automatically have less productive lives.

2016 Meeting Schedule

2016 Meeting Schedule

All meetings are from 12:45 pm to 3:00 pm in the Casey Conference Room at Swedish Medical Center's Cherry Hill campus (17th & E. Jefferson).  There is limited street parking, in addition to a parking garage.

We offer moral support and information to families, friends, caregivers and those (of all ages) living with the condition of hydrocephalus.  Drop ins are welcome.

January 16
February 20
March 19
April 16
May 21
June 18
July 16
August 20
September 17
October 15
November 19
December 17

March 17th we will be participating in the UW's 2016 Brain Awareness Open House at the HUB Ballroom on the University of Washington campus from 9:30 am to 1:30 pm.  We will, as always, be seeing several hundred school age kids, along with their parents and teachers, to talk about brain health and living with hydrocephalus.  We also let participants know that hydrocephalus can be acquired at any age.

Happy 2016!!

'Concussion' The Movie

I saw an interesting interview on GMA with Dr. Omalu.  His research and p.o.v. are SO important to the future of brain health, worldwide.  This isn't just an issue about the NFL, although that is where a lot of the focus is.  Concussions, and the long term aftermath, isn't just about contact sports, but about head injuries of any kind.

During his interview, Dr. Omalu demonstrated with a balloon in a jar, what happens to the brain itself when it gets rattled around inside the brain.  That isn't normal.  The cerebral spinal fluid is a cushion, but it has its limits.  What is rarely discussed is that the interior of the skull isn't a smooth surface.  It is jagged and rough, which can lead to bruising, tearing and bleeding of the brain.  That can also lead to everything from mild damage to death.  That can also include swelling.  All of this can lead to dramatic life changes or the end of life.

Dr. Richard Ellenbogen, a neurosurgeon, has repeatedly pointed out that this isn't just about football or traditional contact sports.  CTE can result from other activities, like bicycle accidents or any other brain trauma.

This still comes down to the real 'cure' for conditions like CTE and hydrocephalus, is prevention.  Once the damage is done, it is done.  Every case is unique, so while some will have mild impairment, others will have massive life changes, or even death.  The focus on 'cure' after the fact needs to be tempered.  Training first responders is vitally important--as we have seen with those who have been 'in charge' of determining concussion protocols and failing to do their job.  We've seen that on the field in football.  More than once, I've seen the footage of an NFL player 'down' on the field, "out cold" and seen signs (however slight) that the player is having a seizure--not just "out cold".

We've also heard the reports that Freddy Grey (sp) was heard 'banging' in the van while handcuffed.  Chances are pretty good that what the officers heard was Mr. Grey having a seizure and not properly responding to it.  They have no idea what was going on, they simply assumed that it was Mr. Grey's choice.  Seizing isn't the person's choice.  It is electrical misfires in the brain that happen when the brain is assaulted or because of damage.  Treatment does NOT include putting anything in the person's mouth or attempting to stop the seizure, only making sure that the person is on their side and not being injured during the seizure itself.

There are over one hundred types of seizures someone can have.  They can acquire the condition (it isn't a disease) at any time of life, usually because of an brain injury of some type.  Having untrained people around can be worse than doing nothing!

I'm hoping that 'Concussion', the movie, helps to break stereotypes and leads to the general public learning more about the brain and appreciating its unique and priceless part it plays in everyone's life.