August Meeting

Sorry for the delay in posting about the August meeting.  As always, we discussed ideas for increasing awareness about hydrocephalus, as well as the meeting.  I'd love to see us get back to having an annual picnic.  It would also be great to be able to do some additional promotions.

I'm hoping that increasing our presence on Facebook will help.

I'll have to cut this short for now.

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!

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!

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.

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.

BRAIN AWARENESS OPEN HOUSE 2016

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.

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.

FOX NEWS (CHANNEL 11/13, SEATTLE) AIRING BRAIN FEATURE @ 10 PM ON 10/7/15

I saw the Fox News piece on last night's news and they spoke about a special they will be airing tonight about the inner workings of the brain.  If their previous work is any indication, this should be excellent.

Last night they had a teaser where they interviewed two prominant docs from the University of Washington--one was neurosurgeon Richard Ellenbogen and the other was a sports medicine specialist.

A big part of the reason for the special and the smaller segments devoted to brain injury is because Washington state has already had something like four TBIs with high school football players.  As much as the high school football gets the attention, other sports (LaCrosse, soccer, softball, etc.) are also impacted.  Statistically, more brain injuries occur from bicycle accidents than sports.

There is also the added attention to the Lystadt Law, which requires any high school coaches/trainers to remove a kid from play if a concussion is even suspected.  Kids aren't allowed back in the game until they have been evaluated by a medical professional.  I believe they said that now all states have some form of the Lystadt Law in place to protect kids in sports.

I'm looking forward to watching tonight.

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.

September 2015 Meeting

I'd like to start by thanking the group for my belated birthday present.  I love the book.

It was great talking to Liz in a conference call.  Sorry my phone wasn't able to be used this time around.

We discussed many topics during the meeting.  Among them was the issue of finding "A Cure", which so many are seeking.  I've found that most of these folks are parents who are new to the hydrocephalus experience and still believe that we all 'suffer' with hydrocephalus, when that isn't the case.  As we agreed about at the meeting.  No single cure is ever going to be achieved because there are simply so many causes.  Focusing on the various causes and working from there for one of MANY 'cures', for lack of a better word, should be much more of where the focus should be.

The cause of a preemie brain bleed and resolving or peventing them would be the answer to one segment of the hydrocephalus population.  We already know that congenital hydrocephalus can be greatly reduced when women maintain a healthy level of folic acid throughout their childbearing years.  There is also a genetic link for some hydrocephalus.  Both men and women should know their family's medical histories.

Prevention is key for a lot of hydrocephalus.  Preventing brain bleeds is just one area.  Preventing accidents that lead to traumatic brain injury (TBI) is another key.  Making sure that as much prevention as possible is part of every bike ride and sport is another great preventative step.  However, it isn't a 'cure' it is about prevention to reduce risk.

Hydrocephalus is a manageable, treatable condition.  It isn't a disease, although many unfortunately use the terms condition and disease interchangeably.  We aren't all 'suffering', most of us are living our best lives with a condition that is simply part of our daily lives.  We are realizing our true value in beinig true to ourselves and the lives we've been privileged to live.  While hydrocephalus is part of life, it isn't the ONLY thing in our lives.

What many have brought up is the reality that most of the focus has been on children with hydrocephalus, with very little dedicated time put to adults living with the condition.  Those kids grow up and become adults.  Those adults go to college, get married, have kids & careers.  We are rarely shut away from the public or institutionalized simply for having a condition.  What also gets ignored are those who acquire hydrocephalus as adults--be it through accident or spontaneously, a condition now called normal pressure hydrocephalus (nph).

NPH is often misdiagnosed as Parkinson's, Alzheimers or some other form of dimentia, delaying or preventing treatment.  It is estimated that misdiagnosis occurs in 10-15% of cases before a diagnosis of NPH is made.  Unfortunately, a lot of the brain damage done is irreversable.

For those who think that shunts are 'barbaric' and 'primitive', I suggest doing research on how hydrocephalus was treated in the past, before the mid-1950's & 60's.  Even since then, shunts have been evolving, to the point where progammable shunts make invasive procedures less frequent.   At one time there was research being done on growing shunts from a patient's own tissues, to eliminate the risk of rejection and other complications.  We've come a long way in tissue harvesting and issues surrounding it, since the 70's when some of the literature was published.

We are all unique and the secret is to embrace those unique qualities, living life to its fullest.

Monthly Meeting Reminder

Just a quick reminder that the September meeting will be held at Swedish Hospital's Cherry Hill campus, in the Casey Conference Room from 1pm to 3 pm on September 19th.  We look forward to seeing everyone.  Remember, drop ins and kids are welcome.

'Inside The Brain' Viewing

'Inside The Brain' can be viewed on YouTube.  It is well worth the time to watch.  Lots of really great information about the brain & what research is being done. 

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.

MediKin Demo Doll (Hydrocephalus) Update

We went to Goodwill this week and I looked at shoes for the doll. I got some CUTE sneakers for it (they go well with the jeans & sweatshirt jacket). I also got a pair of pink cowboy boots (they go great with the OshKosh dress) and four pairs of Sesame Street bootie/socks. Next time I'll look for some other items. The more we do to get creative with the doll the more accessible it becomes. We were already getting double takes from people, thinking that it was a real baby. That only increases with every added item. The great thing about that is that it opens the door for conversation, which is a great thing for us! I would really like to create a social media platform for the doll and have pictures following the doll on its 'travels'. It would be great to have a couple of other dolls and follow them on 'travels' further afield than Western Washington.

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.