Sunday, December 22, 2013

December 2013 Meeting


The final meeting for 2013 was small, but successful.  We discussed several hydrocephalus and brain injury topics.  I am still trying to round up informational pamphlets to put into packets for the Seattle Police and other first responders.  NINDS sent me a pamphlet on hydrocephalus, which we appreciate.  I may include some of them in our exhibit/booth at Brain Awareness in March, as well as the informational packets.
We also discussed how the Affordable Care Act (ACA) is impacting us.  I'm still trying to find something that is affordable for me and will allow me to keep my current primary physician.  I really don't want to change, but may have to.  It is a real disappointment that the Washington state Medicaid program denied the facility my doctor is affiliated with in their coverage.

We also caught up with what has been going on with members since last month's meeting.  Great to hear that Brian's health is improving.  We miss him at meetings, but it is a long trek to get to Seattle.  Our thoughts and prayers are, as always, with him.

I'm still hoping to get more 'stuff' for the Brain Awareness booth this year, as always.  I'm also interested in finding other people in the community who have brain issue awareness and would be interested in spending even an hour or two of the four hour event, to help discuss the issue with the kids, parents and teachers attending.

Saturday, December 21, 2013


We meet on the third Saturday of each month, from 12:45 pm to 3:00 pm in the Casey Conference Room at Swedish Hospital's Cherry Hill campus (17th & Jefferson, Seattle).  We welcome anyone wanting information/moral support in living with the condition of hydrocephalus.  Drop ins are welcome.
Our meeting was founded by parents and those (of all ages) living with hydrocephalus over 20 years ago.  Every story is unique, just as we are.
January 18th
February 15th
March 15th
April 19th
May 17th
June 21st
July 19th
August 16th
September 20th
October 18th
November 16th
The 2014 Brain Awareness Open House at the UW will be March 4th.  We look forward to seeing Western Washington students (grades 4-12) at the event, along with parents & teachers.  If any teachers would like to have us speak to their classes about hydrocephalus & living with the condition, feel free to contact us.

Tuesday, December 17, 2013


Happy Holidays!  This will be the final meeting of 2013--the year went by SO fast.  I'll be posting the 2014 schedule shortly.  December 21st, from 12:45 pm to 3:00 pm in the Casey Conference Room at Swedish Hospital's Cherry Hill campus will be our meeting this month.  As always, drop ins are welcome, as well as children & anyone wanting information about hydrocephalus.

I also want to take the opportunity to thank Swedish Hospital for their generous assistance in providing us with meeting space for the last several years.  It has been great having the space and being available to those in need of moral support in living with hydrocephalus.  We look forward to many more years of service to the community and the assistance of Swedish in that effort.

I would also like to thank the many friends of the group, and family members, worldwide, who have helped make the group a success.

I'm looking forward to 2014 with great anticipation.  Look forward to seeing new and familiar faces in the coming year.

Monday, November 25, 2013

The 'Knockout Game'

How disturbing is this?!  Obviously, those participating in this 'game' haven't got a clue about the potential damage they can do with this.  Today's national news addressed a few of the deaths that were caused by these careless 'kids' who seem to think that it is 'fun' to knock someone out on the street.
As usual, I look at it from the hydrocephalus perspective.  This is one of the many ways that someone can acquire hydrocephalus--through a traumatic brain injury (TBI).  Hitting one's head against a sidewalk, curb or wall can/does cause such injuries.  I'm sure that this will be a subject of conversation at the December meeting of the Hydrocephalus Support Group, Inc.
I have no idea how this started or how to stop it.  I guess that until something happens to those who think this is a game, entertainment or funny it will continue.  As I've said before, someone who isn't hyper-aware of their brain isn't going to appreciate that precious cargo the same way as those of us who are living their lives very aware of their brain.  While I'm concerned about this in general, specifically, some stranger who isn't aware that someone already has a condition, like hydrocephalus or a TBI already, could SO easily prey on them, causing irreparable damage, or even death.  From everything I've seen/heard about this 'game', it is inflicted on complete strangers, so it is quite possible that someone with a pre-existing brain issue could be killed by these kids 'having fun'.
The November meeting was very productive.  We discussed ways of increasing our presence online and in Western Washington.  I'm looking at ways that we can get involved in more community events, as well as increasing the awareness of the condition with the general public, as well as first responders.
Also wanted to say Thank You to NINDS for sending us the newest hydrocephalus pamphlets to include in our media kits.  Looking forward to the Hydrocephalus Association's (HA) contribution of literature to include in the kits.
I'm also hoping that Seattle's new Mayor and his staff will include hydrocephalus awareness throughout the year, but especially during September (Hydrocephalus Awareness Month).
The Allen Institute, here in Seattle, is going to be expanding its brain research to covering CTE, which is great.  Founded by Microsoft's Paul Allen, the Institute has already done the brain mapping, which is available online.
I'll be posting the 2014 Schedule in the coming weeks.

Tuesday, November 12, 2013



Last night one of our local tv stations aired a piece about a string of sites online that promote shaking babies as a positive thing.  The reporter & the anchor mentioned that someone might think of this as a joke, but no one here is laughing.  Neither is the mother who went to the media when she saw one of these sites.  Her son was shaken a few years ago & sustained a severe brain injury that has changed many lives, forever.  He will never able to live to what was once his full potential, because someone, for whatever 'reason' lost control & inflicted unimaginable damage to a young child.

No one who understands what happens inside the skull during one of these shaking episodes can think there is any humor in this.  The inside of the skull is rough & jagged, not intended for the soft brain tissue to come in contact with it.  Cuts, brain bleeds and bruising can easily result.  These can lead to swelling & pressure being put on the brain, impacting a child in many ways, depending on the areas of the brain impacted.

Frankly, this is also what happens inside the skull when a concussion happens to someone older than a small child.  While it isn't called the same thing when it happens to an older child or adult, the results can be the same.  This is what happens when heads collide, be it on the football field or a car accident.

Unfortunately, there doesn't seem to be any information about the statistics of what damages take place, or how many cases of acquired hydrocephalus result from such impacts, but given that there is often significant brain bruising, bleeds, swelling & pressure (whether temporary or permanent) on the precious cargo, the brain, we know that it is a very real possibility of being one of many causes of acquired hydrocephalus.

Brain bleeds can be slow & unknown to the person or those around him/her.  Someone with an undiagnosed brain bleed can think that everything is fine, when it definitely is NOT.  Anyone with a brain bleed, adult or child, can think that nothing is wrong, go to bed & never wake up!  It is also not something those around the injured person would know about by just looking at the person either.  There can be some signs, but most of those aren't going to be picked up on by others.  Personality changes, thinking that they are doing one thing when they are doing something else, disorientation, getting beligerant, throwing up or having a headache can be present, but not always.  Taken out of context, these could all be attributed to someone coming down with a 'bug', being impossible to deal with or simply being 'a brat' (or in the case of an adult, they could be drunk).

Babies may be fussy or sleepy.  Not things that most caregivers are going to necessarily associate with a brain injury.

There is NOTHING funny or positive about brain damage.  While some can overcome the challenges resulting from the damage left by brain injury, it is hardly something to put a positive spin to.  It alters many aspects of the person's life, & those around him/her.  I can only hope that ignorance is what is behind someone thinking that there is anything 'funny' about this.

Monday, November 11, 2013



First, thank you to all service members, past and present, for their tireless service.  It IS greatly appreciated.

As always, it gets me back to thinking about those who have had to adjust to a 'new normal' after a head injury, particularly one that caused an acquired case of hydrocephalus.  My heart goes out to those having to make the adjustment personally, as well as family members, caregivers & friends, who also must make the many adjustments to incorporating hydrocephalus, or any resulting conditions, into life.

The support group has been trying, for quite sometime, to get the word out about our meetings for all those impacted by the fallout after a hydrocephalus diagnosis.  This month's meeting will be on November 16th, from 12:45 pm til 3:00 pm, in the Casey Conference Room at Swedish Hospital's Cherry Hill campus (17th & Jefferson, Seattle).  As always, drop ins are welcome, as well as kids.

I'm also getting ready for the transition now that Seattle has a new Mayor, Ed Murray.  I'm hoping that Mayor Murray will be open to expanding the conversation and education of the police, and other first responders, to acquired hydrocephalus and its prevention.  We are in the process of putting together a packet of information for the police department about acquired hydrocephalus, which is a first step in the right direction.

Looking forward to this month's meeting!

Thursday, October 31, 2013

New Article About Normal Pressure Hydrocephalus (NPH)


I just got an email, via MedLine, that was published on (The Alzheimers Association), about Normal Pressure Hydrocephalus (NPH).  Very informative and, IMO, critical for everyone with older parents.  Sadly, an estimated 5-15% of cases of Alzheimer's (& Parkinson's) are found to have been NPH that was misdiagnosed, because many of the symptoms are similar & most of NPH patients are older, fitting into the age range when medical professionals see those with Alzheimer's & Parkinson's.

Unlike Alzheimer's & Parkinson's, NPH (particuarly when found & treated early) has a successful treatment.  When shunted early, damage/impairment can be minimal.  However, some damage/impairment can be permanent.  The downcast gaze, shuffling gate and other gait issues are all signs of NPH.  It is still possible for someone with NPH to live a long life after being shunted.

As always, we welcome those adjusting to life with NPH, as well as family members, caregivers & friends at our monthly meetings, as well as connecting with us through the blog and email.

Our next meeting will be November 16th, from 12:45 pm to 3:00 pm in the Casey Conference Room at Swedish Medical Center's Cherry Hill Campus (17th & Jefferson, Seattle).

Sunday, October 20, 2013

October Meeting Update

The October meeting was very productive.  We had a conference call with a member who was out of state, which was great.  We discussed several topics.

I am still trying to get more literature and 'stuff' for our booth/display at the UW's Brain Awareness Open House event, tentatively scheduled for early March, 2014.  I want to include information on concussions and brain injury.  Still waiting for literature from HA.

We are going to be making informational packets to some of the first responders in the area, since many aren't aware of acquired hydrocephalus.  I'd also like to see us work with some other groups to create an informational resource/event that would be an educational effort.  As always, we are open to anyone who wants to find out about, or ask questions about hydrocephalus.  Generally, so many don't know about any area of hydrocephalus other than congenital or newborn brain bleed cases, or what it means to LIVE with hydrocephalus.

We also talked about the current focus on concussions & CTE.  There is so much more to find out in the coming years with this and how it impacts kids of today when they become older.  They may not see the results of concussions/closed head injury until their 40's or 50's, which most kids aren't thinking about.  It would also be interesting to see just how acquired hydrocephalus could play a part in some cases.  It isn't just about the encephalopathy (sp)--CTE--it is about countless other aspects not being talked about, like brain bruising and swelling of the brain after being knocked around into the sharp bone of the inner skull.

The brain IS precious cargo.

Tuesday, October 15, 2013



October 19th (Saturday) will be this month's meeting.  As always, we will be meeting from 12:45 pm to 3:00 pm in the Casey Conference Room at Swedish Hospital's Cherry Hill campus (17th & Jefferson, Seattle).  Anyone with an interest or questions about hydrocephalus is welcome to attend.  We welcome drop ins & kids.  We look forward to seeing new & familiar faces.

Wednesday, October 9, 2013

FRONTLINE: CTE/Concussion Issue 8/8/13

FRONTLINE:  CTE/Concussion Issue
The Brain Is Precious Cargo

What an interesting piece!  While the NFL, and football, has been the main focus in the media, CTE & the concussion issue applies to so many areas of life and sports.  Denial isn't, and has never been, the way to look at things that are unpleasant or that mean change.  Change is part of life.

"The brain is precious cargo" was a quote that resonated with me.  I've always felt that way, but then, I have had a lifelong awareness of my brain, and that of others, that wasn't like most people's.  That awareness comes from a life of having to be hyper aware of my brain, it isn't something most people give a second thought to.  That is why I don't think that a lot of parents, coaches and kids appreciate the potential damage that can be caused by these sports that have become such a part of communities--like football, soccer, etc.  Even if a soccer player 'heads' the ball on the 'sweet spot' of the head, it is known to cause temporary (& potentially permanent) brain damage.

Those doctors who commit themselves to brain research are great heroes.  Everything about the brain is unique and facinating, IMO.  I'm not talking about finding a 'cure' for hydrocephalus research, I'm talking about finding out about how the brain works and how damaged brains got that way.  It is pretty obvious that the 'cure' here is simply not putting the brain into these situations, although we all know that there are going to be those who are insistant upon doing it, no matter what.  I don't think that, as I said before, prior to the damage that they would truly appreciate what was being told to them by those who have been through it first hand, or as a parent, child or spouse.

These two hours just scratched the surface of this story.  There is SO much more to be discovered in the future through research, like Dr. Ann McKee & the Boston University CTE Center are doing.  Personally, I've thought seriously about leaving my brain and spine to science so they can find out more about my type of hydrocephalus.  Wish I could be there for the results!

I was also taken by the mistaken diagnosis of Alzheimer's and Parkinson's with CTE, which has also been the case for Normal Pressure Hydrocephalus (NPH).  NPH can be treated successfully if there is an early diagnosis. 

Tuesday, October 8, 2013

FRONTLINE: The Concussion Issue


I'm going to be watching Frontline tonight with great interest.  The concussion issue is a real concern when it comes to acquired brain damage, particularly as it relates to hydrocephalus.  I realize that everything isn't hydrocephalus related, but it IS one of the conditions that can be acquired by head trauma (TBI).  From the interviews about this particular episode that I've seen so far, there should be an interest in seeing if there is a connection, especially since two of the conditions that are frequently mentioned in conjunction with this issue are Alzheimer's and Parkinson's--which 5-15% of the time are the first diagnosis that someone with NPH (Normal Pressure Hydrocephalus) receive, possibly delaying prompt treatment, which is critical to a patient having the best outcome possible.

I do think that it is over-reacting for people to say that this is potentially the end of football.  Denial doesn't address the very real issue of brain damage and permanently altering players' lives so profoundly.  Trying to project that denial onto researchers who have devoted their careers to finding answers to brain issues is incredibly insulting to everyone.  There are always going to be those who, when told of the potential risks, will still jump into the fray.  There are also people who have no experience with brain injury, who honestly, can't appreciate just what that brain damage will cost them.  I've seen people who acquired hydrocephalus as adults, who DO see a big difference between life before their brain injury and life after. I'm not saying that they can't overcome some, or most, of the challenges, or that the fight isn't worth the effort, but it is a life changing experience.

I can't say, from a personal perspective, what it is to go from that before and after experience.  I was born with hydrocephalus and know nothing else.  I didn't have a life before hydrocephalus and after, although I do have the before and after of having my hydrocephalus arrested (not active).  That could change at any time, without notice.  I've had to find a way to not constantly think about it and to live the best life possible.

In talking with a friend yesterday, I posed the question if CTE (what the researchers are calling the football head injury related to concussive events) is, in some way, related to hydrocephalus.  Again, I realize that not everything head injury involves hydrocephalus, but it should still be part of the discussion.  So many unanswered questions!  This is where brain research is vital and interesting.

As I've said before, I'm not against brain research, I'm just not fixated on finding that 'cure' for hydrocephalus.  I'm sure that there is a lot more research and development to do to improve the shunt for the future and that could potentially improve a lot of lives.  Perxonally, I have always been interested in the research into growing one's own shunt, using the patient's own skin cells/dna to grow a shunt that wouldn't be seen by the body as a foreign object.

Thursday, October 3, 2013


September came and went with hardly a word spoken about National Hydrocephalus Awareness Month.  Frankly, little was said about National Alzheimers Awareness Month either.  Now we are into October and you can't swing a cat (as they say) without hitting on something pink or entire panels of talk shows talking about breast cancer.  Even there, men with breast cancer is barely mentioned.  Although I was pleasantly surprised to hear a local reporter talking about male breast cancer screening at the Mammography mobile.

Back to hydrocephalus, it is a shame that so little is said about it when the subject has so many angles to explore.  Tying it in with Alzheimers awareness, brain injury awareness, etc.  Talking about how it can be acquired at ANY age.  Bringing up NPH (Normal Pressure Hydrocephalus) and the 5-15% of cases of NPH that are first mistakenly thought to be Alzheimers or Parkinsons.  Found early, NPH is SO treatable!

I was hoping that some of actor Boris Kojo's interviews the last month or so would have included a discussion (or mention) of hydrocephalus, since it hits close to home for him.  But nothing.  It also would have been a great time for Shonda Rhimes (sp) of Grey's Anatomy to mention it, since the character of Zola has hydrocephalus.  I LOVE the fact that Zola is shown as an active child who happens to have hydrocephalus, not as a child who is always having surgeries & fulfilling that doom & gloom picture that so many paint of those of us living with hydrocephalus.

I was really hoping that some of the former football players and others with high profiles might do some PSAs for National Hydrocephalus Awareness Month, but nothing.

I'm waiting for the pamphlets and fact sheets to come in so we can put together the packets for the Seattle Police Dept.  I want to get as many of those packets out to the members of the police force so that they, as first responders, have a bit more knowledge about hydrocephalus, its causes and head injuries in general.  I'd also like to see some tie-ins with our group in raising awareness in Washington state, particularly Western Washington.  It really is important for those of us in the brain oriented community (be it hydrocephalus, brain injury, Alzheimers, Parkinsons, etc.) to come together & be part of the public discussion on brain injury, TBIs in terms of prevention, not just focusing on research and 'cures'.

It really is frightening to look at how much research, in general, is being halted because of the Government Shutdown.  Not to mention the support services that are suspended because of this.  It isn't just those with hydrocephalus living with a sense of isolation and a need to reach out to others living with the same condition.  Potentially, there are literally lives hanging in the balance because of this.  It isn't just adult lives either.  We know the importance of nutrition and brain health, yet programs like WIC (Women Infants & Children) is having to deny access to food and services (including education) to the most vulnerable among us--children.  No child left behind?!  Nutritional impoverishment can have lifelong consequences that leave them VERY far behind.  Of course, our focus is on children with already compromised brain health.

What a month!

Tuesday, September 24, 2013

September Meeting

September Meeting 

September's meeting was great!  We were small and had hoped that some new faces would come, but they didn't.  We still had a great meeting.  We had a conference call with a member on the east coast, which is always nice.

Among the things we talked about was how everyone has been doing and some topical news items, as they relate to hydrocephalus.  So many associate hydrocephalus only with spina bifida or as a neural tube defect on its own.  There are many causes and it can be acquired at any age.  We are, as far as I can find, the only hydrocephalus support group in Western Washington that offers moral support and information to families, friends, caregivers and those OF ALL AGES living with the condition.  The adult populations get left out, most of the time.

I notice that there is another big push for those research dollars, rather than for advocacy.  If only some of those expressing an interest in research would advocate for living the best life possible, rather than trying to 'fix' us.  There is a place for research, but not at the expense of those who DO live with the condition daily.  For some that is more of struggle than for others, but as we are always saying, every case is unique. It is a real shame that we're still seeing medical professionals giving new parents the old doom and gloom predictions for the unborn, advocating for termination, rather than focusing on the positive.  There is no way to know what potential the unborn with hydrocephalus have before birth.  None.  If someone looked at my brain scans, they might think that I was at death's door.  Yet, I'm not, far from it.  I'm very much a functioning person with lots of potential left in a very full life.  I'm not saying that the road has been easy, it hasn't, but the challenges have worth overcoming.

My mother was told all sorts of horror stories about how my life would be.  She was encouraged to turn me over to the state and "forget (she) ever had a child (me)."  Like that would ever have happened!  She was threatened with being denied access to me in the hospital when she went to the hospital's library to find out what she could about my condition.  She was also threatened with being denied access to me because she was (gasp) holding other babies in the nursery.  Back in 1961 they didn't appreciate the importance of holding infants.  It was also 'suggested' that she not visit me so much in the hospital, because I cried when she left.  Thank goodness I was doing something normal!!

My mother was told I would be a vegetable and die by the time I was 13 yrs old.  Left in the care of the state, that prognosis would probably have been the case.  I recently celebrated my 52nd birthday.  I drive, I cook and shop for the family.  I'm far from being that vegetable that they predicted I would be and I'm living a very full and active life.  Everyone with hydro that I've met has overcome those stereotypes and is living the best life they can, for them.

I was reading where someone posted that there has been no significant improvement on the shunt in the last fifty years.  So untrue!  There have been MANY improvements.  We've gone from being manually drained (over draining was always a possibility with this method) to having programmable shunts that make invasive surgeries less common.  Not eliminating them, but greatly reducing the need for them.  There are cases of hydrocephalus that can be diagnosed before birth and in some cases, shunt surgery can be done before birth, also greatly reducing brain damage possibilities.  But again, we don't know for sure what areas of the brain are effected or to what degree that will dictate someone's potential, until they are born and be allowed to develop into who they are.

My original shunt(s) were primative by today's standards, but after I was 2 yrs old I went 13 years without a shunt surgery, or surgery of any kind.  After my revision in 1977 (which I found out later was unnecessary) I went 6 years without a shunt surgery.  In 1983 I had a staph infection in the tubing, probably caused by an unrelated, elective surgery I had in 1982.  In 1983 I had the infected tubing removed and haven't had any tubing for over 30 years.  I also haven't had a hydrocephalus related surgery in that time.  I'm not saying that is the case for everyone, but having a surgery every 18 mths isn't everyone's story either.  Again, every case is unique.

I realize that without research and the efforts of many scientists, the improvements on the shunt wouldn't have happened.  I also agree that research is needed.  However, the objection I have is to the idea that we need to be 'fixed' and can't live productive, full lives (whatever that is to each person) without that 'cure'.  There are so many causes that a one-size-fits-all 'cure' is truly impossible.  What IS possible is lessening the need for shunts, appreciating the real dangers in concussive incidents at any age, finding cures for tumors that impact the flow of csf (cerebral spinal fluid) and changing the mindset that no damage can happen to the brain when it is shaken or kicked.  We never hear people, like Dr. Oz, or The Doctors talking about what a neural tube defect actually IS, or the importance of women of child bearing age knowing their folic acid levels and how that can play a significant role in prevention of both spina bifida and hydrocephalus.  What we DO hear is how bad fortified flours are, when one of the things that fortified flours were created for was to increase the folic acid in foods because so many women were deficiant in it.  The cases of hydroephalus and spina bifida DID go down.  The neural tube is developed before most women know they are pregnant, so increasing consumption of foods high in folic acid after finding out they are pregnant is too late.

As part of National Hydrocephalus Awareness Month, I spent a lot of time sending out a number of emails to local public relations firms, hoping that some of them would have some clients interested in doing some tie-in advertising with us.  One responded, but said that his clients are Internet and social media based, as well as being based in places other than Washington state.  So short sighted!  A tie in with social media would be great for both them and us.  Where they are based shouldn't really be of concern, since we are talking about an online presence, plus tapping into the potential of reaching many more through social media!  I just keep thinking of all those folks thinking that they are alone in their hydrocephalus experience, when that is SO not the case.

Two of our members are going to be taking a video production class series.  I'm hoping that this could be another area of outreach that we could utilize.  My mind is racing with ideas.  I'm already thinking about next September and efforts to increase our visibility for National Hydrocephalus Awareness Month 2014.  I'm also working on the Brain Awareness Open House event for 2014.

Look forward to seeing more new faces at the October meeting.

Tuesday, September 17, 2013



It is always sad to lose someone, especially someone so young.  Add the element of the unnecessary, illegal helmet to helmet hit and its avoidability and the tragedy reaches a new level.

So many remain unaware of the very real dangers of concussions and traumatic brain injury (TBIs).  We are coming to the end of National Hydrocephalus Awareness Month and I couldn't find one word from the sports reporters about it or the avoidability of acquiring hydrocephalus through contact sports, like football.  In the coming weeks we will hear about the promising life of Damon Janes, but little or nothing about how avoidable this was.  Helmets are, honestly, a false sense of safety.

More than what goes on inside the helmet is what goes on with the brain inside the skull, which is rough and jagged, not smooth or soft.  In small children it used to be known as Shaken Baby Syndrome.  In teens & adults it is simply a traumatic brain injury (TBI) and that is as far as most reporters take it, falsely believing that the audience "wouldn't understand" if it was explained.  A bruise to the brain or a brain bleed can/does lead to increased pressure on the brain, which can be caused by altering the flow of the fluid that bathes the brain & spine.  You don't "walk off" the effects of a hit to the head, period.  The person who received the blow may not know that they are danger.  The potential patient can think they are fine, especially if they don't have any reference point to go by.  Just looking at them isn't going to tell you what you need to know.

A couple of years ago I spoke with a police representative locally who was amazed that someone could have a brain bleed, or bruise, think they were fine, go to bed and never wake up.  That is the reality of a TBI, especially a closed head injury.

Not just coaches, but parents and players need to be more aware of the potential dangers in having their kids playing contact sports.  I'm not saying never play, just to be very aware of the downsides, as well as the positives.  Rules about what hits are legal and not also needs to be taken more seriously.  It isn't about chickening out or not being a member of the team, it is about long term care and a life away from the field.

Shunts have come a long way, but they are a treatment, not a cure.  The only cure is prevention.  In this case, making sure that hits like the one Mr. Janes took, are appreciated for what they are--dangerous & potentially deadly.

Looking forward to Saturday's meeting.  We will be meeting in the Casey Conference Room at Swedish Hospital's Cherry Hill Campus (17th & Jefferson, Seattle) from 12:45 pm to 3:00 pm.  Drop ins & kids are welcome, as well as anyone wanting information about hydrocephalus.

Friday, September 6, 2013


The September meeting will be 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).  Can't believe that September is here already!!  As always, we welcome drop ins and kids to our meeting.
I've been making a lot of outreach contacts, via email, the last week or so, with mixed results which I expected.  It is always disappointing to find so many not realizing that hydrocephalus is not 'just' a kids' illnes/condition.  Those kids grow up and live full lives--hello!!  Not to mention the families, caregivers and friends of those kids and the adults they become.
As I've said before, our focus is on living a full, rewarding life with hydrocephalus, not searching for 'the cure'.  There are simply so many causes that a one-size-fits-all 'cure' is never going to happen.  In a lot of cases, the key is prevention.  Even that isn't reasonable.  We are always going to have kids, and adults, taking chances and seeing concussions as 'no big deal', when it IS.  Those of us living with the condition know what a big deal it can be!  It isn't going to be reasonable to expect contact sports to not have head injuries/TBIs/concussions being a part of it.
I have a difficult time believing that those retired professional atheletes would have appreciated the potential problems/issues of their decision to be involved in their contact sports of choice.  For years now, we've been hearing brain researchers and those doctors dealing with the brain on a daily basis expressing concerns about 'heading the ball' in soccer.  Even if players hit the sweet spot, deficits in brain funtion have been found, however short or long term.
I'm not against kids taking part in sports and being active, but coaches and parents need to be aware of the negatives, as well as the positives.  In some states (like Washington) kids playing contact sports aren't allowed to re-enter the game if they've taken a shot to the head, until they have been cleared by a team physician.  That means more than a simple 'look 'em over', it means really testing them, to be sure that there isn't any subtle, like a brain bleed that can't be detected simply by looking at the kid.  Or expecting the kid to know whether he/she is healthy enough to play.  A person may not know they have a brain bleed or bruising of their brain.
We are also starting work on our table(s) for the UW's Brain Awareness Open House for 2014.  This year's event was a great success and, as always, we are on the lookout for 'stuff' to top last year's event.  Sponsorships for give away items (reuseable bags, caps, tee-shirts, etc.) are always something we are looking for.  We are a 501(c)(3) organization and have been for sometime, so donations are tax deductable.
I've also been looking at some possible fundraising ideas.  I'll be talking about them at the September meeting.  Most of what I've been doing for the last week is looking for resource lists to be added to.  Even those that don't list us on their websites are often willing to keep our information for future use or give to their members moving to the Washington state area.
Looking forward to the 21st!

Thursday, August 29, 2013

NFL Settlement

The issue of the NFL settlement touches a nerve, in terms of those who have acquired this and other conditions through concussion and other head trauma, specifically related to sports.  I saw one interview where a former player was saying that if he had been warned, or at least told of the possible injuries he might have rethought playing.  I seriously doubt it.  Kids in pee-wee leagues and school programs simply don't appreciate the potential dangers of what they are doing.  They just want to play the game, pure and simple.  Even if you told them all of the dangers, they wouldn't think twice about suiting up and jumping into the frey.

Frankly, that applies to parents and doctors as well.  Both groups of adults sign off on having kids playing contact sports, with the dangers being perceived as not being as relivant to their kids as it really is.  They also don't think about what could happen decades down the road.

I've spoken out about research into the 'cure' for hydro,  I'm one of 'those people' who don't feel that I need fixing.  However, I DO think that there is a HUGE place for research into acquired hydrocephalus and understanding the impact of concussive injuries on the brain, in general as well as it relates to hydro.  Personally, I would have liked to have seen some $$ required to be dedicated to brain research and awareness for the kids, parents, doctors and coaches.

It was a big deal when it became illegal to keep a kid in play after a possible head injury in school contact sports.  It was a step in the right direction.  The only 'cure' for acquired cases of hydro is PREVENTION.  Doing everything possible to prevent hydro is going to lessen the number of cases--be that acquired through a brain bleed or through head trauma--be that in sports or on the battlefield.

Sunday, August 25, 2013


September is coming fast!  This is National Hydrocephalus Awareness Month and we are, as always, looking for ways to bring awareness to the issue of living with hydrocephalus.  For us, obviously, this is a daily issue and while it is great that we have a national movement of awareness, we need to keep that concept alive twelve months out of the year.

I have been looking for ways to combine that with fundraising ideas for the group.  We have a few programs in the Seattle area that the group needs to be looking at participating in, that would both raise awareness and funds for us, as a 501(c)3 nonprofit organization.

I've also been looking at various events (fairs, health fairs, etc.) that we might be able to include in our outreach projects.  Right now, our biggest event is the UW's Brain Awareness Open House, which is a great event--we love taking part every year, but we need to find some additional events to participate in throughout the year.

It would also be great if we could find some sponsors to help us with participating in some of the events that require money for booth participation.

Admittedly, I should have been trying harder to get some articles in local and regional papers and magazines for September's awareness month.  Awareness is about much more than looking for research dollars.  It is about informing the public about ALL that hydrocephalus is (and isn't), not just focusing on one aspect, that of finding research dollars.

Another aspect of awareness is about letting those living with the condition know that they aren't alone and that groups, like the Hydrocephalus Support Group, Inc., are out here for them to participate in.  That includes family members, friends, caregivers and those in the medical community as well.  All too often, we (and those close to us) are left feeling isolated with this condition.

As I always say, we look forward to seeing new faces at the monthly meetings and increasing our membership.  The next meeting is on September 21st, from 12:45 pm to 3:00 pm in the Casey Conference Room at Swedish Medical Center's Cherry Hill Campus (17th & Jefferson) in Seattle.  We welcome anyone with an interest in hydrocephalus.  Drop ins and children are welcome as well. 

Saturday, August 17, 2013

August Meeting

A small but mighty August meeting.  We had one participant call in, so we had a conference call which was nice.

We discussed ideas for Brain Awareness Month, which is coming up in September.  Lots of ideas, but too little time.  Planning for 2014 is in the works.  I promptly came home and did some research into various health fairs and other ideas of expanding our outreach.  Next year I would love to see us have some articles in mainstream, local and regional newspapers and magazines.  I would also like to see us getting involved in some discussion groups on the topic of brain health and development.

I also sent out a bunch of emails to various producers of events in Western Washington to explore the idea of having booths at events in Summer, 2014.

We also touched on the issues parents have in dealing with having a child with challenges, not limited to hydrocephalus.

Thanks to Frank for bringing me a birthday card.  It was great!

Hope to see new faces, as well as the regulars at the September Meeting (9/21/13).

Thursday, August 15, 2013

August Meeting--8/17

Just a quick reminder, the August meeting is this coming Saturday, from 12:45 pm to 3:00 pm in the Casey Conference Room at Swedish Hospital's Cherry Hill Campus (17th & Jefferson) in Seattle.  Drop ins & kids are welcome.  There is street parking, as well as two parking garages and direct bus service (#3 & #4).

We look forward to seeing new and familiar faces, as always.

Hard to believe that Hydrocephalus Awareness Month is in less than a month!  As always, we are looking for as many ways to reach out in the community, especially in September, to shed more light on this important issue.

Friday, August 9, 2013



In reading various posts online, primarily from newer parents, I felt that I needed to put things in perspective.  There is never going to be a one-size-fits-all 'cure' for hydrocephalus, simply because there are many causes.  Prevention is the best 'cure' out there, avoiding the condition all together, but that isn't realistic.

To say that there hasn't been any new development in shunts is simply not true.  When I was shunted in 1961, there had been a lot of progress made over the previous decade or so.  What was state of the art then is primitive by today's standards.  There was a lot, certainly not enough, research and development that went into improving shunts over the last fifty years.  Today there are many types of shunts, including programmables, that vastly improve the lives of those of us living with hydrocephalus.  Note:  We aren't suffering with hydrocephalus, we are living with it.  It is also a condition, not a disease.

While the statistics may be accurate, that sixty percent of us will always have some degree of dependance on others, that dismisses the forty percent that ARE independant and productive members of society.  Even those on full disability from the government can still be living productive lives, whether that is volunteering in their communities or working a few hours a week for money, if they are able.

We aren't just sitting around, waiting for death to overtake us.  A diagnosis of hydrocephalus isn't a death sentence.  It shouldn't be seen as such.  My mother was told by doctors to turn me over to the state, to be warehoused and it was 'suggested' that she forget all about me because I was going to be a vegetable and dead by the age of 13.  I'm about to turn 52 in a few days.  I never attended a 'special school', I went to regular, public school from K-12 and went to college.  I majored in culinary arts, so their prediction of me never being able to feed myself was proven untrue, along with a lot of other 'definite ideas' from the early 60's.

I certainly understand and appreciate parents' concerns about their children and the type of life they will lead, but that is true for every parent.  No child totally lives up to the expectations their parents had for them when they were born.

I'm not against research, in general.  I want to know as much as possible about my hydrocephalus, just as many of us do.  What I don't need is to be 'fixed' or underappreciated for what I have to offer because of some myths that persist about my condition.  I've met quite a few others, in my age group, who have had periods of time where their hydrocephalus was 'arrested'.  That doesn't mean it doesn't exist, only that it isn't active.  Mine has been 'arrested' for almost 30 years.  But it could become active again an hour from now, or never.  I have been without a shunt, which is rare, for over 30 years.  That too could change, but it doesn't dictate how I live my life.  My family and I focus on what I CAN do, rather than what I can't.

Today's new parents to hydrocephalus have access to lots of information, support groups and a much more accessible medical profession than my mother did in 1961.  She was told that she would be forbidden to see me in the hospital if she insisted on going to the medical library and finding out as much as she could.  She was also told that she shouldn't visit me in the hospital because when she left I would cry.  Thank goodness I did something NORMAL!  She was also told that she shouldn't touch or hold any of the other babies in the nursery.  Today, hospitals can't get enough volunteers to hold sick babies!!

We have people living productive lives in our group, who have been living with hydro for over 50 yrs.  We also have parents and family members who have been around us throughout our lives.  It is a challenge to live with hydro, but it is also a blessing rather than a curse.  It is scary for those who are new to it and sometimes it is scary for us as well, but it is definitely worth the fight to live.

Monday, August 5, 2013



The August meeting will be held on the 17th, from 12:45 to 3:00 pm in the Casey Conference Room at Swedish Hospital's Cherry Hill Campus (17th & Jefferson).  We welcome families, friends, those (of all ages) living with hydrocephalus, kids and drop ins.

Last month's meeting was very successful.  It was great seeing new faces, as well as the familiar ones. 

Wednesday, July 24, 2013

July Meeting Round Up

The July meeting was a great succcess!  We had a new face this month, which was great.  Hopefully there will be more in the coming months.  We answered a lot of questions and had a great dialog.  It was also great to see a friend of the group attending this month, it was a very pleasant surprise!

It is always great to answer questions and make dealing with hydro a bit less daunting for family, friends, caregivers and those living with the condition.  As often happens, we got around to one of our pet peeves, the issue of labeling those of us living with hydro as being 'hopeless' and living less than fulfilling lives.  I mentioned one incident that, even years later, bothers me because it was so public and was one of the few times hydro was mentioned on a mainstream medical drama.  The doctor came to a couple and said, "Your child has hydrocephalus.  Your only option is to terminate the pregnancy, because the child will have no life."  Not only was this offensive, and untrue, in general, but the creator/exec. producer/writer of the show has a seizure disorder IRL--so even more so does HOW DARE HE! apply.  He had a platform that could have been used to both entertain and inform, but he chose to take the low road.  Thankfully, Gray's Anatomy has chosen the high, rather than the low, depicting a child living with hydro as being an active, functional person and the parents as leading normal lives, rather than constantly hovering, waiting for the next 'disaster'.

I was looking for some hydro related bumper stickers to possibly put on the new car, but kept finding these 'Find A Cure For Hydrocephalus' bumper stickers.  The opposite message from what I want.

We did mention, during our discussion, the research that had been done decades ago in terms of growing a shunt in the lab with the patient's own cells.  I can only imagine how far that could have progressed with the new knowledge of this kind of thing, generally speaking.  It would be great if the shunt tubing now used could be replaced with something grown from the patient's own cells.  But that isn't about 'The Cure' it is about improving treatment.

Honestly, the only Cure is really prevention.  Women of childbearing age making sure that they have healthy levels of folic acid in their system before getting pregnant (afterwards the barn door is closed) and knowing their family histories.  From there it is a matter of preventing post birth brain bleeds in preemies, preventing head injuries in sports & other activities.  Prevention also includes wearing helmets when bicycling or riding motorcycles, ATVs, snow mobiles, etc.  Lots of kids avoid wearing helmets while playing sports, but that is also necessary to prevent concussion as well as acquiring hydrocephalus--but these aspects of hydrocephalus are rarely, if ever, talked about.  Prevention also includes how our soldiers are treated when they are placed in harms way.  Ignoring or being unaware of the long range aspects of head injury (particularly closed head injuries) is dangerous and leads to undiagnosed hydro, or even misdiagnosed hydro later on.

I saw an interview with Sanjay Gupta a couple of weeks ago and I'm always waiting for him to discuss this issue, but he never does.  Someday it would be great to hear him talk about prevention and treatment, as well as what living with hydro involves.  But too many of the interviewers (including folks like Dr. Oz) dismiss hydro as being 'too complicated for the audience to understand', which I disagree with.  It also isn't nearly as 'rare' as the medical community would like us to believe.

This month's meeting was great!  Hope to see more new faces in the months to come.

Re: July Meeting

Just a quick reminder that this Saturday will be the July, 2013 meeting of the Hydrocephalus Support Group.  We meet in the Casey Room, located within the Swedish Hospital's Cherry Hill Campus (17th & Jefferson, Seattle) cafeteria/dining hall, from 12:45 pm to 3:00 pm.  We will probably actually start about 1 pm.

We, as always, welcome anyone with an interest or questions about living with the condition of hydrocephalus.  We welcome children & drop ins to the meeting.

We look forward to seeing familiar and new faces at the meeting.

In addition, Charlie Rose's PBS series on The Brain is being rerun this week.  It is fascinating and worth watching.  The series focuses on the President's Brain Initiative and those who are going to be a part of mapping the brain, similar to what was done with mapping the human geneome.  The Allen Brain Institute, locally, is a part of the Initiative.

Sunday, June 16, 2013


It was great seeing familiar faces!  We discussed a wide array of topics, from attitudes (from others) about living with hydrocephalus and misperceptions (again, from others) about what it means to have a hydro diagnosis to having a conference to call with a friend of the group who lives on the east coast.  It was all great!

Part of our mission is to overcome the myths and misperceptions of hydro, one major one being that those of us with the condition (not a disease) cannot live full lives.  We aren't always having surgeries or living limited lives in wait for something to happen.  It is one of my pet peeves, that it is assumed that we 'need' to be 'fixed' or 'cured' and that the only REAL focus should be on finding THE Cure, that one size fits all solution to 'fix' us.  Difficult to do when the causes are many and it can be acquired at any age!

As we often do, we discussed the history of the shunt and how far things have come since many of us adults were born, in the 50's and early 60's.  The idea of the programmable shunt was, at best, a dream of neuroscientists, but hardly what would have been considered within the realm of reality.  As far as research goes, I'm all for it, but not with the sole goal being to 'fix' us.  My journey has been an interesting one that I wouldn't change for anything.  I would be interested in finding out if mine is genetic, since I was a congenital (born with it), for instance.

I find it facinating that my brain can see scans of itself and learn about itself.  I would love to find out about what did and didn't develop in my brain during gestation (sp) but not with the goal being to 'fix' me or others like me.

It has been great seeing Dr. Richard Ellenbogen, a neurosurgeon at Seattle Children's and the UW/Harborview, on local tv talking about concussions.  So many folks just don't appreciate the seriousness of head injury, at any age.  Many simply don't know the symptoms of a concussion or a closed head injury.  Dr. Ellenbogen has also been an advisor to the NFL on the subject.

I recall talking with a Seattle Police Captain about closed head injuries and how it shouldn't be optional for someone they deal with to refuse being checked out before being allowed to go home.  He was stunned to find out that someone could have a brain bleed or bruising, NOT know it and not be capable of determining the signs or of acting in their own best interest, going to bed (sleepiness is a symptom) and simply never waking up, or waking up with a life altering situation.  The Captain had been one of those who wasn't aware of the symptoms or the seriousness of a head injury.

We also talked about continuing to reach out to folks we haven't seen, or heard from in awhile.  Even if just through Facebook or email, we would love to hear from those who haven't been reachable.  We like to keep in touch and hear what folks are up to.  We also have the ability to have conference calls for the meeting, as we did this month.  Those are great, especially for those who are far away or who don't have transportation.

We look forward to seeing everyone at the July 20th meeting.  We welcome drop ins, children and those with an interest in hydrocephalus.

Saturday, June 8, 2013



A reminder that the June meeting will be on June 15th, from 12:45 pm to 3:00 pm, in the Casey Room at Swedish Hospital's Cherry Hill Campus (17th & Jefferson) in Seattle.  We welcome drop ins and anyone with an interest in hydrocephalus.  Children are also welcome to attend.  Parking is available in the parking garage(s) and on the street in the neighborhood surrounding the hospital.
We always like seeing new faces and answering questions about living with hydrocephalus.

Sunday, May 19, 2013

May Meeting Update

May Meeting Update

The May meeting was very successful!  We had two new faces at this month's meeting, which was great.

One person was the guest of our meeting's facilitator.  She is also a retired nurse, so she brought the perspective of a health care professional to the meeting, which was great given that our other new person was recently (in the previous week) diagnosed with hydro.  It was great meeting her and having her perspective as part of our conversation.

The other was someone newly diagnosed with hydrocephalus.  Hopefully we put her mind at ease and answered all the questions she had.  As always, our door is open if anything comes up in the future.  It was great meeting her and addressing some of her concerns.  All of us know about the nervousness of going into this, even with our years of experience.

In the last week my own 'concern' has been the sensitivity of my burr hole area.  It has been very sensitive to touch and even the slightest wind or the air from the blowdrier.  I didn't have any of the other symptoms that would be of a concern to a neurosurgeon or neurologist, so I've just been keeping an eye on it.  I did ask the hairdresser/stylist to take it easy on that area when I got my hair cut last week.

Today it all seemed fine.  Spent a lot of time outside, without a hat, and the burr hole area wasn't sensitive.  I didn't even notice it today!  Hopefully, whatever it was (a minor infection was one suggestion) short lived and over with.

I can't believe that June is our next meeting!  Half the year will be over with.  Doesn't seem like so much time has passed.

Hope to see more new folks in the coming months, as always--in addition to the regulars.

Take care.


Wednesday, May 8, 2013

REMINDER: May Meeting on May 18th


This month's meeting will be May 18th from 12:45 pm to 3:00 pm in the Casey Room at Swedish Hospital's Cherry Hill Campus.  As always we welcome drop ins and anyone interested in the condition of hydrocephalus.  We also welcome children, as well as adults and those, of any age, living with hydrocephalus.
We look forward to seeing everyone!

The April meeting was very good.  As always, we had some lively discussions about aspects of living with hydrocephalus and caught up with everyone who attended.  We missed those who couldn't attend.  Maybe this month...

Unfortunately, my car was broken into during the meeting.  No one was hurt, just some minor (replaceable) items were taken.  The thieves even locked the car back up when they left!  This has never happened before and the car was parked in the parking garage!  Hoping it won't happen again.

I've changed my contact email, from to  Too many 'issues' in getting my hotmail account back, for the second time this year.  So I can be reached either by either account ( or 

Locally, one of the tv stations aired a piece about a Swedish study on elderly adults and falls.  They talked about the increase in traumatic brain injury (TBI) to seniors who fall.  Very interesting study.

Hope to see everyone on the 18th!

Sunday, April 14, 2013

April Meeting Reminder

Reminder For The April Meeting

Just a quick reminder that the April meeting will be held on the 20th, from 12:45 pm til 3:00 pm in the Casey Room at Swedish Hospital's Cherry Hill Campus (17th & Jefferson).  All that are interested in hydrocephalus are welcome to attend.
Also, wanted to send belated condolences to Shawnee and her family, at loss of her mother.

Just saw the interview on Bill Moyers & Company (PBS) with Sherman Alexie.  Very interesting and, as always, informative.  

Sunday, March 31, 2013

Hard to believe the year's first quarter is done!  This March has been a good one, for me.  Brain Awareness was a success and we are planning for 2014.  Lots of brainstorming going on about new ways to generate awareness, donations and getting the word out about living with the various aspects of hydro in daily life.  Easter is also one of those times I find myself being thankful for everything that has come my way and to refocus on my goals for the future.

I'm really hoping that some of my long term goals for the Brain Awareness exhibit will happen in 2014.  I really want to build on what we've created over the last 15 yrs or so. 
Spring has definitely sprung!  The tulips and daffs are coming on strong.  Just waiting for the roses and lilacs to come into their own.  Just getting used to not wearing my coat everywhere!

Looking forward to April 20th, the next meeting for the group.  As always, looking forward to seeing familiar and new faces.  Always hoping to see those we haven't seen in awhile as well.  They were missed at last month's Brain Awareness event.
I've been reading a lot of articles about Traumatic Brain Injury (TBI) and other causes of hydro, posted/published by the CDC via the Seattle Public Library's database.  Very interesting and informative.  Our city and state leaders, as well as educators and coaches need to read these articles and take their information to heart.
Just a quick note:  It was great to see that Kathi Goertzen was memorialized by WSU's Edward R. Murrow School of Journalism by having naming a building after her.  Kathi was a great person and a longtime Seattle journalist who battled non-cancerous tumors for over a decade before losing that battle in 2012.  She is definitely missed.  But with her foundation and WSU's tribute to her, she will always be remembered.
Hope to see everyone on the 20th!

Tuesday, March 19, 2013

March 2013 Meeting


We reviewed the 2013 UW Brain Awareness Open House event and all agreed that it was one of our most successful to date.  Already planning for 2014, which will be our 16th year as an exhibitor at the event.  Hard to believe how fast the time has gone.

Wanted to thank Dr. Eric Chudler for organizing the event and for providing the pictures posted in the last blog post.  I am looking forward to getting more from someone else.  Also wanted to thank Bobbe & Dean Andersen for coming up for the event from Olympia.  It is always great having them being a part of the meeting and events.

Also wanted to thank Dave, from Medtronic, for coming again.  It is always nice having Medtronic at our table, showing the kids, parents and teachers how a shunt works and how they've evolved.  This year he also brought a video that was popular with the kids.

Getting to this month's meeting was a real challenge, with all the detours due to road work and the growing chaos from sporting event fans in Pioneer Square.  I do want to appologize, again, for being late to the meeting.  All I can say is that getting TO the meeting was a piece of cake compared to getting home!

We did speak with a teacher or two who asked if we do speaking engagements at schools.  We would LOVE to do them, but we rarely get asked.  The more people who know about hydrocephalus the better, especially prevention.

Friday, March 8, 2013

 Tuesday, March 5th was the 2013 Brain Awareness Open House, sponsored by the University of Washington.  This was our 15th year as an exhibitor at this event and we got to meet with 600-700 students from Western Washington from grade school to high school.  As always, it was great meeting the kids, parents and teachers that came.

Kim Andersen, Frank Cook, Diana Pozzi and Kim's mother, Bobbie Andersen manned our booth.  We were fortunate to have Medtronic's shunt rep Dave Schinkel also attend.  He brought some great visual aids and a dvd of a shunt surgery that the kids got to watch.

It is always great to have the opportunity to answer questions and address myths and misunderstandings about hydrocephalus.  It is also nice to be able to let people see that we live full, productive lives with the condition of hydrocephalus.

We're already in the process of making plans for the 2014 event!

It was interesting to hear a teacher ask if we go to schools and make presentations, which we would love to do!  We have members who could make a presentation to students and classes, particularly in the Puget Sound area.  Our group has members throughout Puget Sound--from Olympia to Port Angeles.

As always, we encourage those interested in hydrocephalus to attend one of our monthly meetings.  We meet on the third Saturday of each month, in the Casey Room, from 12:45 pm to 3:00 pm.  The March meeting will be on March 16th.

Student & Bobbe Andersen
Frank Cook

Bobbe, Dave (Medtronic Rep), Kim, Frank & Diana

Thursday, February 28, 2013

Brain Awareness Exhibit


The 2013 Brain Awareness (BAW) Open House is coming up on Tuesday, the 5th of March!  Can't believe it is coming up so soon.

I picked up some of the giveaway items, so kindly donated by KING5 Television, for our exhibit.  One of our topics this year is about how weather (specifically the barometric pressure) impacts those of us with shunts.  It ties is with the weather dvd that KING5 donated.  Their donations are always welcome additions to our table(s) at the event.

We still have some giveaway items from last year and are expecting some items from other sources in the coming days.  We'll have lots of 'stuff', which is always great.

We will be seeing several hundred kids from Washington state schools--everything from private and home schooled kids to public school students.  In addition, we will be seeing lots of parents and teachers.

I'm already brainstorming for next year's exhibit.  Hard to believe that we've been part of BAW for over 12 years.  How time flies!  Lots of surprises, hopefully. 

I'm hoping to be able to post pictures from this year's event on the blog shortly after returning from the event.

Yesterday I found a number of periodical articles on hydro that were published in February, 2013.  I just skimmed them, since I was at the library and running out of time on the library computer.  I'd love to include some of the articles and information in our BAW exhibit.

Sunday, February 17, 2013


 This month's meeting was our last before March 5th's Brain Awareness Open House Event.  We are still getting 'stuff' together for the exhibit, including searching for a tv/dvd combo unit (small) so we can show a couple of dvds.

I'm still hoping to get some donated items from KING5, our local NBC affiliate.  They have donated things, like reusable bags, in the past.  The reusable bags were a big hit with the kids at the event.

We are looking forward to having Medtronic being a part of the exhibit again this year too.  Another aspect of our exhibit that has gone over well with the kids, as well as parents and teachers.

As always, I'm hoping for more than we get for each year's exhibit.  Some day I would love to have some neuro researchers with a focus on hydrocephalus at our booth.  I'd also like to have a 'wall' of brain scans to show kids how every one is unique.  While I found some online, I'm not sure how good the quality of them would be after being reproduced.

I'm also hoping to get a new charger for my camera and be able to post pictures from BAW.

At the February meeting we had a new person join us, which was great.  We got to hear his story and he got to hear our's.  Hope to see him at future meetings!

I was sorry to hear that Dr. Ben Carson, neurosurgeon, will be retiring later this year.  He is one of the country's premiere pediatric neurosurgeons.  He spoke at last week's Prayer Breakfast in Washington DC.  He was also on ABC's This Week.

Looking forward to the March meeting where we will be discussing BAW.

Thursday, January 17, 2013

January Meeting Cancelled

Unfortunately, we are having to cancel the January meeting due to illness.  Several of us have this 'bug' going around and don't want to infect others.  We WILL have the February meeting, as scheduled.

Hope to see everyone in February!

Sunday, January 6, 2013

2013 Meeting Schedule


All our meetings will be in the Casey Conference Room at Swedish Hospital's Cherry Hill Campus (17th & Jefferson, Seattle) from 12:45 to 3:00 pm.  Drop ins & children are welcome.

  • January 19th
  • February 16th
  • March 16th
  • April 20th
  • May 18th
  • June 15th
  • July 20th
  • August 17th
  • September 21st
  • October 19th
  • November 16th
  • December 21st
We will be participating as an exhibitor at the UW's Brain Awareness Open House on March 5th.  We will be meeting with several hundred Western Washington students, teachers & parents for the day, talking about various aspects of living with hydrocephalus.