April Meeting Announcement

Hard to believe that we are already looking at the April meeting already!!  It will be on the 16th, from 12:45 pm to 3:00 pm, in the Casey Conference Room at Swedish Hospital's Cherry Hill campus (17th & Jefferson, Seattle).  Drop ins are welcome.

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

Looking forward to seeing everyone!

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.

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.

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.

RERUN: FRONTLINE'S REPORT ON CTE

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.

VIOLENCE IN THE CLASSROOM...

Here we go again! The S. Carolina 'resource' officer was fired for his over the top response to a CHILD being "non-compliant".  People have said that there are consequences for your actions and that is precisely what has happened here.  The officer, thankfully, isn't going to be "retrained" or moved to another situation. 

There is a reason why choke holds are illegal in many states, especially for police.  It further endangers the suspect and can lead to brain injury or death.  The same can be said about throwing someone across the room.  There can also be spinal injury, which can lead to a situation, like acquired hydrocephalus.  Anything that disrupts the flow or production of the cerebral spinal fluid (csf) has the potential to cause dangerous accumulation of pressure around the brain.

I don't care if the child, any child, hit an officer.  That is a ticketable offense, not something that rises to the level of this kind of violence.  We had a situation here a few years ago where an officer used excessive force on a teenage girl who threw a shoe at him and, supposedly, said something nasty about his "mother".  That officer also body slammed the teen, only this was against a cement wall.  He was the adult--the TRAINED adult.  The same with this situation.

So this officer apparently lives with a black woman.  Big deal.  Who is to say he doesn't toss her around the house from time to time.  I think it is fair to say that he out weighs said girlfriend and if he blows up because of a backtalking teen and has a history of overreaction/excessive force, then it isn't much of a stretch to theorize that he takes those behaviors home.

There needs to be more logic applied to how everyone, from the teacher in the classroom to the Principal of the school handles these kinds of situations.  Not to mention finding good officers for resource work who aren't hotheads with bad judgement.  I've said this before, this is also about how officers are trained.  Many, fortunately not most, don't have proper regard for the damage they can do that will take a productive (or potentially productive) person and make them vegetables, or worse.

I don't care what this particular child said or did.  It didn't rise to the level of the response that was taken, by anyone.  Also, I find it disturbing that a school that knew about this resource officer's behavior condoned it and let it continue!  Parents send their kids to school for an education, not to be terrorized.

ANOTHER DIAGNOSIS OF CTE AFTER EX-NFL PLAYER SUICIDE--SO SAD

Just saw the news online about Adrian Robinson, Jr.'s post-mortem diagnosis of CTE at only 25 yrs old!  So sad.  So avoidable.  Such a tragedy.

With every article we see the same general information.  Players who played hurt and decisionmakers who failed to take concussions seriously.

I'm sure that this will be a topic of discussion at the meeting on Saturday.

Reminder: October Meeting on 10/17

Just a quick reminder, this Saturday (10/17) will be the October meeting, from 12:45 pm to 3:00 pm in the Casey Conference Room at Swedish Hospital's Cherry Hill campus (17th & Jefferson, Seattle).  Drop ins & kids are welcome.  It should be an interesting meeting.  Some members will be calling in and we'll be talking about 'Stir'!

'Stir': A great read!!

I spent last night reading one of the best books I've read in ages!  'Stir', by Jessica Fechtor (author of the 'Sweet Amandine' blog) is a great book, but those of us in the world of TBIs and other great brain journeys, can identify with her memoir about suddenly going from one life to another, unexpectedly.

I started it last night at 9pm and didn't look at the clock again until 1 am!!  I swore I'd read just a chapter more when I got up this morning, but four chapters later I was rushing to get out the door on time.

I immediately emailed members of the group about it.  Everyone needs to read this, whether they are new to the experience, a seasoned veteran or anyone around us--friends, family, etc.  Can't say enough about this.

LOCAL FOX NEWS FEATURE ON TBIs & FOOTBALL

The feature on the local Seattle Fox News station was quite interesting.  Locally this has been an issue in the news a lot, with an increasing amount of coverage being given to the research being done at the University of Washington on the subject.  One of the research projects at the UW has evolved into a business, specifically developing a helmet to be used in sports.

The serious approach to the development and implimenation of this helmet is interesting.  But Dr. Ellenbogen and others have also always mentioned that more concussions and other TBIs are acquired through riding bicycles than through football, specifically.  But honestly, ANY activity in life can involve a TBI at some point, some more damaging than others.

I always emphasize education and prevention, because as good as any helmet may be, it isn't the whole answer.  Everyone, parent, child, young adult, adult--needs to have the information and take it seriously.  Part of the problem, in my opionion, is that if someone has no experience with TBIs or the aftermath, they aren't going to come at it with the whole picture of potential issues.  There will always be those who will disregard, or feel they have a balanced point of view,  and those who feel the risks are too much, for them or their loved ones.   It is a personal choice.

I felt that the FOX feature was interesting, thorough and worth the time.

One of the reasons for the attention to this issue locally is the recent loss of Evergreen High School Sr., Kenny Bui, after being injured in a football game.  Our group's prayers and thoughts go out to Kenny Bui's family and friends.

OUR HEARTS & PRAYERS GO OUT TO THOSE IN ROSEBURG, OR

Our group's hearts and prayers go out to those impacted by the shooting at UCC in Roseburg, Oregon last week.  If we can be of any help to those facing survival with brain injury know that we are here.

Our October meeting will be on October 17th, from 12:45 pm to 3:00 pm in the Casey Conference Room at Swedish Hospital's Cherry Hill campus (17th & Jefferson, Seattle).  Drop ins & kids are welcome to attend, as well as anyone with an interest in hydrocephalus.  We offer moral support and information to families, friends, caregivers & those, of all ages, living with the condition.

'Inside The Brain'

I watched most of 'Inside The Brain' on KOMO TV (Channel 4, Seattle) last night.  Very interesting.  It was produced in conjunction with Seattle Children's Hospital.

They spoke with a couple of the neurosurgeons at Children's, one of them is doing extensive research and development of a safer helmet for sports.  It was hard for me to watch even the dummy head being slammed, but well worth the emotional discomfort.

They also discussed a variety of areas of brain research that was quite interesting.  To think, this is still in the early stages & what will be found out in just the next few years!

Overall, it was time well spent.  Hoping for a follow up in the future.

It also provides a springboard for conversation at this month's meeting on the 19th.

July 2015 Meeting

We will be meeting in the Casey Conference Room on July 18th, from 1pm - 3 pm at Swedish Hospital's Cherry Hill campus (17th & Jefferson, Seattle). As always, no reservations are required & kids are welcome. The meeting is open to anyone wanting information about hydrocephalus and living with the condition.

Here We Go Again...Part 2

I will start by saying that I DO support the police and appreciate the difficult job they have. However, last night's news only proves that there is a real problem with training, in general. The job is about much more than target shooting. It is about dealing with a WHOLE community. That community includes those who have a variety of impairments. Head injuries and the post-trauma issues around that, especially with a closed head/spine injury, shouldn't be an unknown to ANY first responder. The more that comes out about what happened after Freddy Gray was injured, however that happened, the more I see a traumatic head/spine injury (TBI) with neuro complications. The flow of the cerebral spinal fluid impacts the pressure on the brain and anything that impacts that flow can cause pressure to build up. That would cause incredible pain and for someone with no experience with it, they wouldn't be able to articulate what was going on. In addition, as I said before, not imobilizing the neck and spine would have only increased the injury, if there was an internal decapitation going on. There is a reason that EMTs secure a patient's neck and spine before transporting them to the ER. Those officers didn't call for appropriate assistance, even when the victim was asking for that assistance. It didn't help Mr. Gray to NOT secure him in the van in the first place. Now we are hearing that a second person in the van, along with the driver, heard banging and noises coming from where Mr. Gray was seated. They didn't see him and it only lasted "a few seconds". With ANY TBI, there is a high risk of the patient having a grand mal seizure. That wouldn't last minutes, necessarily, but seconds. It also speaks to the severity of Mr. Gray's injury. From what has been reported, the assumption was that he (Mr. Gray) was doing this on purpose. That he was trying to hurt himself. A seizure, of any type (there are over 100 types) is involuntary. It is a short circuiting of the brain and should be a sign to go to the nearest ER, rather than dragging the patient/victim out of the van and putting them in restraints. All of that could easily have contributed to furthering Mr. Gray's injuries. I realize that it is popular right now blame police for excessive force. IMO, if all of this is accurate, it is all about lack of training and awareness of head injury, as well as a lack of common sense. What also concerns me is the report that stated that while the DA will look at the final report on what happened to Mr. Gray, none of the facts will be made public. All that leaves is speculation and keeps the 'exessive force' issue for the public to consider. It certainly doesn't clear anything up or inform the public about what probably DID happen.

Here We Go Again...

Here we go again, with first responders having no clue about spinal cord or head injuries.  The Baltimore PD now faces hot water, as they should, for the internal decapitation death of one of their citizens because of a total disregard or awareness of such a condition.  Frankly, even EMTs have a difficult time determining an internal decapitation, but the fact is, nothing was done to prevent such an injury and looking at the video, the officers on the scene don't seem to be aware of the possibility of such an injury.

I appreciate the difficulty of their job, but first responders need to have a healthy respect for the spine and brain.  They need to appreciate that injuries to these areas are potentially fatal or could be life altering.  Prevention is the only way to stop the kinds of life altering injuries that take someone from being able to pursue their dreams to someone who's dreams have to be altered to fit a 'new normal' that simply didn't have to happen.

I've seen accounts of two incidents in the last week alone where severe, closed head injury (TBI) has been ignored and first responders have only gone by someone's actions on the surface.  The man who was walking down a Texas highway naked (except for his cowboy hat) had been in a car accident.  It isn't unusual for someone with a traumatic brain injury, particularly a closed head injury, to do things like strip off their clothes.  Or, as apparently happened with the young man in Baltimore, he became agressive.  Both are not uncommon responses to a head injury.  Taking these actions as conscious decisions on the part of the victim(s) only shows how little these folks have, in terms of training.  Piling on top of someone with such an injury can also just make the injury worse.

April Meeting/Durst "I Have Full Blown Hydrocephalus"

Looking forward to the April meeting on Saturday, April 18th, from 1:00 pm to 3:00 pm in the Casey Room at Swedish Hospital's Cherry Hill campus (17th & E. Jefferson, Seattle).

One topic we will be discussing will be this week's 'revelation' about Robert Durst having (in his words) "...full blown hydrocephalus" Whether his defense team is going to try spinning this as part of an insanity defense isn't clear.  I'm hoping that isn't the case, since hydrocephalus isn't relevant to any aspect of murdering people.  Insanity and hydrocephalus aren't related.  Hydrocephalus isn't 'insanity' and what a great disservice to the hydrocephalus community if they are even entertaining such a notion.

I will also be bringing along the hydrocephalus doll this month.  It will be used the following week at a health fair in the Olympia area.

Happy Thanksgiving!!

Hope that everyone has a Happy Thanksgiving on Thursday.  I'm always thankful to be alive & well.

We got the official notice/invitation to participate in the UW's Brain Awareness Open House for 2015.  It will be held on March 3rd.  I'll be filling out the form shortly.  Looking forward to participating again.

I've already posted the meeting schedule for 2015.

We look forward to seeing everyone at the next meeting, on December 20th, from 12:45 pm to 3:00 pm in the Casey Conference Room.  Hard to believe that it is almost the end of 2014!!

October Meeting!

Hi!  Can't believe that we are already coming up on the October, 2014 meeting already.  We will be meeting on October 18th, as always, we will be meeting from 12:45 pm to 3:00 pm in the Casey Conference Room at Swedish's Cherry Hill campus (17th & Jefferson, Seattle).  We welcome anyone with an interest in hydrocephalus.  Drop ins are encouraged.  Kids are welcome.

Looking forward to seeing familiar & new faces.  I will be bringing the hydrocephalus doll.