Wednesday, December 30, 2015

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!!

Monday, December 21, 2015

'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.

Sunday, December 20, 2015

December Meeting

Happy birthday, Kim!!

This month's meeting was very productive.  We talked about possibilities for the 2016 Brain Awareness Open House.  The event will be March 17th, from 9:30 am to 1:30 pm in the UW's HUB Ballroom.  We will be, as always, seeing kids from grade school through high school, as well as parents and teachers.  Hard to believe we've been doing this for 20 years!

We are also looking for more ways to increase visibility in the community.  All too often, hydrocephalus isn't talked about.  This led to the discussion(s) about many ways that hydrocephalus is acquired.  This includes any type of head trauma.  Yes, this is where our discussion usually leads, but it is still very relevant.  It also includes the education of first responders.

We also talked about Chris Harris' death and the horrific incident that brought about his disability--including his TBI.  Again, it brings things back around to training of first responders and the myth about 'retraining' people who have an inclination towards violence and excessive force in dealing with 'suspects'.  Shandy Cobain was also 'retrained' after kicking a 'suspect' about the head (and genitals) while yelling racist comments--then expecting the guy to 'walk it off'.  In both instances, it was mistaken identity.  In one case, it cost a man his life and livelihood, while the other was simply 'lucky' to come away without life altering, physical damage.  Chris Harris' offender is still part of the Sheriff's department and has, according to news reports, had other excessive force issues.  Big surprise!

I would like to see us get a group together to go to New Day NW, a local talk show.  I would also like to see them address hydrocephalus in on their health focus Wed. show.  It would also be great to have a corporate sponsor for some marketing projects.  Every year we talk about wanting to have our own reusable bags, tee-shirts and giveaway items at Brain Awareness.

I'll be posting the 2016 meeting schedule shortly.

Wednesday, December 16, 2015


PBS ran part one of Frontline's report on CTE and the history of its discovery.  It is really a great report, one that pulls no punches.  Worth seeing again (and again)!

This is definitely something to have in one's personal collection/library.  As always I would like to see the connection made between head injuries and acquired hydrocephalus.

I'm sure that this is being shown again since the movie based on Dr. Omalu's work is coming out soon.  It wasn't lost on me that Dr. Omalu did an interview on GMA around the same time.

I disagree that football is going to be killed off by the publicity/awareness.  There will always be those who don't believe that CTE is a real risk for themselves or their children--no matter what.  Just as there will always be those parents who don't believe that there is an increased risk for their 4 year olds in playing pee-wee football.  There will also be those cheerleaders, soccer players, etc. who won't believe that any of this would/could ever happen to them.

Saturday, December 12, 2015

December Meeting/Chris Harris' Death

Next Saturday, December 19th, is our final meeting for 2015!  Hard to believe.  As usual, we will meet in the Casey Room at Swedish Hospital's Cherry Hill campus from 12:45 pm to 3:00 pm.  Drop ins and kids are welcome.

Sad to report that Chris Harris has died.  Six years ago he was mistakenly identified by a King County Sheriff's deputy as a criminal and body slammed him, head first, into the wall of a local movie theater, causing severe brain damage.  Our group's thoughts and prayers have always been with Mr. Harris and his family, just as they are with his passing.  Unfortunately, while the medical examiner has reclassified Mr. Harris' death as a homicide, the Sheriff's deputy won't be facing any charges.  He was 'retrained' and cleared about four years ago of any wrong-doing.

As I stated in an earlier post, we have submitted our application for the 2016 UW Brain Awareness Open House event, set for March.  Hopefully, there will also be representatives from the UW's helmet program, a public private partnership, that is developing a helmet that better protects the brain during football.  According to local news reports, the helmet will hopefully be available in 2016!

It also wasn't lost on me that now news reports are recognizing the dangers with cheerleading and sports, other than football, that pose a risk of head injury.  I do realize that there are lots of activities that pose a risk to acquiring hydrocephalus, through brain injury, but raising awareness of this is important.

We will have a lot to discuss this month!

Wednesday, December 2, 2015


The 2016 Brain Awareness Open House event (BAW) will be taking place on March 17th from 9:30 am to 1:30 pm in the HUB Ballroom at the University of Washington.  I've filled out our application for the event today.

I'm hoping we have lots of new material to hand out to the kids this year.  We will be seeing kids from elementary through high school, as usual.  Hopefully, lots of them!

Hopefully, there will be more discussion this year about acquired hydrocephalus, given the increasing awareness of the urgency in the field of head injury and acquired brain damage.

We are also going to be looking for volunteers and more members to help with the event for the day.