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.

Wednesday, November 25, 2015

Thank You, Dick Wolf & Chicago Med!!

Loved the November 24th episode of Chicago Med!  They had a story about an older woman, believed to have dimentia, who turned out to have Normal Pressure Hydrocephalus (NPH).  In addition, they got the facts right!  Sadly, it is true that eighty percent of NPH cases aren't diagnosed.  They are most often written off as having Parkinson's, Alzheimer's or some form of dimentia, so they go untreated.  No need to create drama where it naturally exists.  Only wish they had shown the installation of the shunt.  No one is perfect.

Another aspect of the story I loved was showing the woman on her way to living a full life afterwards.  It was also great showing the spouse's side of things.

The only other show that has done an excellent job with telling a hydrocephalus story has been Gray's Anatomy (Thanks, Shonda Rhimes!).  Showing us not 'suffering' with our condition, but living full lives is always something to be embraced and celebrated.

Last Saturday's meeting was great.  It was small, with some members being out of town early for the holiday.  We talked about what is going on with us this month.  We also had a conference call with one out of town member.  Another topic of discussion was ideas for the 2016 Brain Awareness event.  That is tentitively going to be in March, 2016.

Saturday, November 14, 2015

Heading The Ball

I saw an interview with Dr. Cantu recently, concerning the heading of balls in soccer.  While I was glad to see Dr. Cantu interviewed, in general, everyone else missed the point of the concern around this part of soccer.

It isn't that heading the ball itself is going to necessarily cause a concussion, but it DOES cause problems in the frontal lobe region, especially for children.  The brain isn't meant to be rocking back and forth in the skull.  The cerebral spinal fluid, which surrounds the brain, helps to protect the brain, but it doesn't make bruising or impacts to the brain itself impossible.  The inner part of the skull is rough and bumping the brain itself against it can cause bruising, bleeding and even short term damage that isn't readily apparent.  Some of that damage may be cumulatively damaging.

Dr. Richard Ellenbogen, neurosurgeon, has also been interviewed on the subject of concussions.  While it is quite possible for someone, specifically a child, to acquire a concussion through a bike accident, it is also possible to acquire a condition, like hydrocephalus, from such an accident.

There have been soccer players who have talked about 'safe' heading of the ball in soccer in the past, who have more recently altered their position, agreeing that there is no 'safe' heading of the ball, especially for kids who's brains are still developing.  There is still so much that is unknown about the brain and its development.

November Meeting: Happy Thanksgiving!

As always, it seems like only yesterday we were looking at the October meeting coming up.  Doesn't seem like November is here already!  This month's meeting will be held on the 21st, from 12:45 pm to 3:00 pm in the Casey Conference Room at Swedish Hospital's Cherry Hill campus (17th & Jefferson, Seattle).

Friends, family members, caregivers and those, of all ages, living with the condition of hydrocephalus are welcome to attend.  Drop ins and kids are welcome.  We will be having one or two members calling in during the meeting.

Hope everyone has a great Thanksgiving.

Wednesday, October 28, 2015


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.

Sunday, October 18, 2015

October, 2015 Meeting

The October meeting was small, but very productive.  We had one conference call with Kim--she was out of state this month.

We did talk about 'Stir' and that led to talking about making adjustments to life when things suddenly change.  I really hope that more people read this book and that it opens a dialog with families about sudden changes in life and how we deal with it.  I do think that I came to this book with a very different experience than, say, my mother.  She had a whole different experience as the single parent dealing with the 'professionals' and a young child with challenges.

We also discussed ways to increase visibility in the community, as well as increase membership.  Unfortunately, we know that there are still people who keep hydrocephalus a secret or who feel alone in their experience.  It is far more common than they may have been led to believe.  One thing all of us do is remind folks that we meet on the third Saturday of each month from 12:45pm - 3:00 pm in the Casey Conference Room.  No reservations are required and kids are welcome to attend.

We are, as always, also looking for more 'stuff' to include in our booth at Brain Awareness Week's open house, usually held in March.  The date and time are to be announced.  But, again, as always, I'm planning the next one even before the present one is under way! 

CTE also came up as a topic of discussion, as it often does.  Hydrocephalus never seems to be part of the CTE discussion, in a general sense.  But it is often discussed at our meetings, because one way of acquiring the condition is through traumatic brain injury (TBI).  With the recent deaths of some high school students in Washington state and the definitive report on the cause of former NFL player, Adrian Robinson, Jr., it was bound to be discussed by us again.

Looking forward to the November meeting.  Hoping to see both new and familiar faces.

Thursday, October 15, 2015


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.

Wednesday, October 14, 2015

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'!

Monday, October 12, 2015

'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.

Sunday, October 11, 2015


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.

Wednesday, October 7, 2015


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.

Saturday, October 3, 2015


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.

Sunday, September 20, 2015

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.

Thursday, September 17, 2015

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. 

Monday, September 14, 2015

'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.

Thursday, September 10, 2015


KOMO/4, Seattle area's ABC affiliate, will be airing a special called 'Inside The Brain' on Sunday evening.  From the previews it looks like a facinating program.  For those unable to watch on channel 4 in the Seattle market, it can be found on KOMO's website.

Friday, September 4, 2015

National Hydrocephalus Awareness Month--Is Here!

Hard to believe it is already National Hydrocephalus Awareness Month!  We have been talking about an array of possible ways to attract attention the cause this month.  A couple of them involve getting group tickets so we can showcase hydrocephalus.  So we are looking for supporters and those living with hydrocephalus to help in the efforts to raise awareness.

This month's meeting will be on the 19th, from 1-3 pm in the Casey Conference Room at Swedish Hospital's Cherry Hill campus.  Drop ins are welcome, as well as families and anyone with an interest in finding out more about the condition of hydrocephalus.

Many aren't aware that hydrocephalus can be acquired at any age, through numerous causes.  This includes traumatic head injury (TBI), brain tumors, car/bike accident or even spontaneous (normal pressure hydrocephalus) which is often misdiagnosed as Parkinson's or Alzheimer's.  So it isn't limited to congenital hydrocephalus, which is often part of spina bifida.  Because there are so many causes, there can never be a one-size-fits-all 'cure' for the condition (it isn't a disease, although condition & disease are often used interchangeably).

The journey of life with hydrocephalus can be a bumpy one, but the majority of us still see our lives as productive, interesting & welcome the challenges that it provides.

Thursday, August 20, 2015

Monday, August 10, 2015

Upcoming August Meeting

The last summer meeting for 2015!  How fast time has gone this summer.

As always, we will be meeting on Saturday, from 1-3 pm in the Casey Conference Room at Swedish Hospital's Cherry Hill campus.  Drop ins are welcome.

This will be our last opportunity to brainstorm ideas for bringing attention to hydrocephalus & the group, especially for September, as well as the rest of the year.  A reminder, September is National Hydrocephalus Awareness Month, so any ways to get the word out about the condition is welcome.

If we can generate enough interest, we may be able to bring back the annual picnic.  In years past we would have a picnic at one of the Seattle parks.  It was a fun activity and a chance for people to meet.

Saturday, July 25, 2015

July Meeting Update

The July meeting was a success.  Very rewarding.

We brainstormed ideas for generating more interest in the group, in general & we talked about ways (new & old) for September's National Brain Awareness Month.  We will be talking about this on social media in the coming month or so and look into scheduling this year's awareness projects that we've done previously.  Still looking for more ways to bring in more members.

Lots to bring to the table for the August meeting!  The August meeting will be on the 15th, from 1-3 pm in the Casey Conference Room at Swedish Hospital's Cherry Hill campus (17th & Jefferson, Seattle).

2015 is going by SO fast!!

Thursday, July 16, 2015

Operation Wild--PBS

The PBS series, Operation Wild is great, in general. However, last night's episode was particularly interesting. They profiled a Sun Bear in Laos who has hydrocephalus! Vets & a team of specialists installed a shunt. I was a bit surprised that they didn't use a programmable, to minimize the invasive surgeries in the future. It also would have been easier on everyone, including the Sun Bear, to simply make most changes to a programmable shunt, as opposed to the invasive procedure with the 'old fashioned' shunt they used. I watched w/one of our group's members & it was great being able to identify with everything the team was doing! I'm sure we'll discuss this at Saturday's meeting.

Tuesday, July 14, 2015

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.

Tuesday, June 16, 2015

Upcoming June Meeting

This month's meeting will be on June 20th, from 1-3 pm in the Casey Conference Room at Swedish Hospital's Cherry Hill campus (17th & E. Jefferson, Seattle). We look forward to seeing everyone.

Monday, June 15, 2015

Being Mortal

I saw Being Mortal on Frontline last night. Fascinating piece! Very interesting. They had one patient who had a terminal brain tumor. You could see the impact on him over the time they did the series of interviews with him. One thing they mentioned was his intercranial pressure and the fact that he had repeated lumbar punctures (lps). It seemed odd to me that they didn't put in a programmable shunt. It would have allowed the doctors to monitor his condition as well as relieving pressure in a much simpler, less stressful way--for the patient. It was an excellent piece.

Friday, May 22, 2015

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.

Sunday, May 17, 2015

May Meeting Discussion

The May meeting was interesting. We are going to be discussing more ideas for the 2015 Hydrocephalus Awareness Month in September, at the June meeting. We briefly talked about joining forces with some other groups, with brain issue interests/focus, to come up with some ideas for increasing visibility of the month. Hard to believe that September is only months away! Kim brought the Hydrocephalus Doll (Medikin) back from Olympia, along with a new wardrobe and a stroller. It is now a lot easier to take the doll from place to place. We had another double take in the elevator on the way to the meeting--someone thinking that the doll was a real baby, then realizing that it wasn't. That never gets old! I'll be looking for more clothing & 'shoes' for the doll in the coming weeks at thrift stores. The health fair Kim took the doll to was a success. We, as always, talked about possible ways to generate more interest in the meetings. It would be great to get our meeting numbers up again. I'm always encouraging people with an interest in brain issues, specifically hydrocephalus, to attend. So are the other members. We were also talking about re-introducing the summer picnic. We used to have an annual summer picnic, but for a variety of reasons, that fell by the wayside. We had donations made by some local stores and rented space in a couple of local parks. We always tried reserving a picnic shelter, so we had cooking space, picnic tables and running water. with more participation, it would be nice to bring the picnic back. I have a CT and neurosurgeon appt. scheduled for June.

Saturday, May 9, 2015

Upcoming May Meeting

Hard to believe that we are already looking at the fifth meeting of the year! May 16th is the next meeting of the Hydrocephalus Support Group, Inc. As usual, we will be meeting in the Casey Room at Swedish Hospital's Cherry Hill campus (17th & E. Jefferson, Seattle) from 1:00 pm to 3:00 pm. We welcome anyone with an interest in hydrocephalus, no reservations needed.

Friday, May 1, 2015

Update To 'Here We Go Again Part 2'

While I'm glad to see attorney Mosley taking a strong stand against what happened, the nitty gritty details of what happened still haven't been revealed; they need to be. It is nice to see that someone has decided to hold those involved accountable, but it goes much further than that. What happened in Baltimore isn't an 'isolated incident' and the WHOLE problem has to be dealt with. That means including training for police and other, non-medical, first responders who often arrive before EMTs. There also needs to be a lot more education about what happens with traumatic head injury (TBI) after an accident/incident. The brain doesn't distinguish between the foot of a cop or the foot of some random person on the street. Just as it doesn't make distinction between someone on or off duty or their rank. Aiming for the head or spine areas is simply not acceptable. I still can't believe that someone couldn't tell the difference between a seizure and intentional harm to themselves. A seizure can last only seconds. If someone goes into status (having numerous seizures, one after the other) they will, at best have brain damage as a result of not having medical intervention, or they will die. Ignoring it won't make it better or improve the person's situation. As much as the officers are being held accountable, TPTB need to take a serious look at what their people know and DON'T know, then change it so that they DO have the information and can do the right thing.

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.

Monday, April 20, 2015

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.

Sunday, April 19, 2015

April Meeting

The April meeting was very productive.  It was great having one of our out of state members being part of a conference call for part of the meeting.  Always a lot of great discussion and input.

I brought the hydrocephalus doll along so Kim & her mother could take it to a health fair today in the Lacey/Olympia area.  As always, there were a few second looks & a comment or two.  One said that it was a cute baby!  Another double take was from one of the neuro staff.  Fingers crossed that the health fair goes well.

At least I'm not alone in taking issue with the Durst letter and comment about having "full blown hydrocephalus".  In some of the footage I saw of him, it is quite possible he has NPH, but that has no bearing on his mental health as it relates to the possibility of him being a murderer and using it as part of some 'insanity' defense.  We all agreed that the implication is a very negative one that needs to be cleared up.

We talked a bit about issues with doctors, GPs as well as specialists.  A common topic for us.

I brought up a speaker I saw last Friday.  My mother & I went to a lecture at one of the Assisted Living facilities in town.  The speaker was a neurologist who specializes in tremors.  The lecture was quite interesting.  It would be great if we could find a way to have him speak at a meeting or at a symposium sometime.  The other nice thing was seeing how educated many of the attendees were on brain health!

Saturday, April 11, 2015

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.

Friday, March 20, 2015

NPH On Grey's!

Yeah!!  It was great seeing Normal Pressure Hydrocephalus (NPH) in a story on Grey's Anatomy last night.  It wasn't the major storyline, but they did a good job with it.  It would have been more interesting, IMO, if they would have also shown/discussed the programmable shunt--rather than just saying 'shunt'.  But we can't have everything--in one episode.

I've been wishing that Shonda Rhimes would use the platform of the show to bring awareness to hydrocephalus, which she has.  Derek & Merideth's oldest daughter has hydrocephalus.  I love that they show her, when they do, as being a regular kid.  They don't depict her as being miserable or 'suffering'.

Looking forward to Saturday!

Tuesday, March 17, 2015

March Meeting

Just a quick reminder that this Saturday is our monthly meeting.  As usual, we will be in the Casey Conference Room at Swedish Hospital's Cherry Hill campus (17th & E. Jefferson, Seattle) from 1-3 pm.  Anyone with an interest in hydrocephalus or brain issues is welcome.  No reservations required.

We will be talking about the Brain Awareness event from earlier this month.  Otherwise the discussion will be open.  We also will be discussing the opportunities to take our presentation to classrooms in the coming months.

Looking forward to seeing everyone!

Happy St. Patrick's Day

Wednesday, March 4, 2015

UW's Brain Awareness Open House Event: Summary

The 2015 Brain Awareness Event was great!  Every aspect was well worth the effort(s).  It was nice to see that so many of the kids and parents had some knowledge of hydrocephalus, some from personal/family experience, others had read about it.

As always, the kids were gracious and curious about the brain in general and, in most cases, about hydrocephalus specifically.

We used the hydro-doll (a gift from Medtronic) to show the shunt to the kids.  It is always a great icebreaker and conversation starter, with both kids and adults.  We've also had people think that the doll is a REAL child!  That didn't happen at the event though.  I also photo-bombed some group pics with the doll.

Can't believe that the 2016 event will mark the 20th year of the event, as well as our group's participation as an exhibitor.

I'm hoping to be able to post some photos from the event.  It was also covered by one tv station and one of the newspapers.

Monday, March 2, 2015

The Final Countdown To 2015 Brain Awareness Open House!

Can't believe that we are almost there already!  I have the Hydro Doll packed up and ready to go.  Wish I had a stroller and wardrobe for it, but it will work with the scrubs.  Wonder how many people will mistake it for a real baby.

I always want more 'stuff' for the kids to see and take with them.  I'm already planning for 2016.

I do want to thank everyone who will be helping out at the booth this year, in advance.  Your help is so very appreciated.  It will be great to see everyone again.

I just can't believe that this is our 20th year doing this.  Seems like only yesterday we were getting ready for our first one.

Hoping to get photos to post here this year.  Can't wait till I get a good camera and can take some myself to post.

Sunday, February 8, 2015

2015 UW Brain Awareness Open House Event--Planning

We're in the final stages of planning our booth/exhibit for the 2015 Brain Awareness Open House event on March 3rd.  Looking forward to seeing over 650 students from Western Washington schools, as well as teachers & parents.

Lots of interesting items for handouts, as well as bringing the Hydrocephalus Doll (a generous gift from Medtronic last year) to its first event!  I've brought it to meetings & to some social gatherings (non-hydrocephalus related), with great feedback.

I'm looking forward to seeing some of our long distance friends at the event, helping out with the exhibit.  It will be great to see them again, since many aren't able to make it to the monthly meetins, unfortunately.

For those who don't know about the UW's Brain Awareness Open House, it is an annual event for school age kids to learn about how the brain functions.  It is always a fascinating event for kids, as well as parents & teachers.  Many learn about new aspects found in brain research.  Our group talks about living with hydrocephalus, the causes & the complexities of the condition.

The next support group meeting will be on February 21st, from 1-3 pm in the Casey Conference Room at Swedish Hospital's Cherry Hill Campus (17th & Jefferson, Seattle). 

Sunday, January 18, 2015

Summary of January, 2015 Meeting

It was a great meeting.  We discussed personal developments, as well as plans for the new year.  Among those plans was Brain Awareness Open House, scheduled for March 3rd.  We are going to be getting new informational handouts and are making plans for more out of town assistance.  Planning for a great 2015 event--as usual.

The 1-3 pm schedule is a good one.  Although our out of town members have only half an hour to get their lunch before the dining hall closes at 1:30 pm.  So glad we didn't have to meet on game day--that can be a real hassle when picking up or dropping people off at the train station.

As usual, we brainstorm ideas of how to make this year's exhibit better than the last.

Looking forward to February's meeting.

Friday, January 16, 2015


Looking forward to our first meeting for 2015.  I would have updated this earlier, but life got in the way for the last several weeks.

We will still be meeting in the Casey Conference Room at Swedish Hospital's Cherry Hill campus, from 1-3 pm.  We welcome anyone with an interest in hydrocephalus, no registration required.  Drop ins & kids are welcome to attend.

Looking forward to Saturday!!