The Hydrocephalus Support Group, Inc. 2017 Schedule

All meetings start at 12:45 pm on the third Saturday of each month and run til 3 pm.  We meet in the Casey Conference Room, located in the cafeteria, down the hall from the Starbucks in the lobby.

January 21
February 18
March 18
April 15
May 20
June 17
July 15
August 19
September 16
October 21
November 18
December 16

We will also be participating in the 2017 Brain Awareness Open House at the UW HUB Ballroom.

April Meeting Announcement

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

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

Looking forward to seeing everyone!

Preparation For Brain Awareness

The booth for Brain Awareness is coming together.  It promises to be another rewarding year.  We got a box from the Hydrocephalus Association (HA), which is always helpful.  We have at least one rep from the shunt manufacturer, Medtronic attending, plus members of the support group.

The estimate is 700 or so kids (grades 4-12), plus parents and teachers.  Our exhibit should be full of information and lots of information from those of us living with the condition.

I'm also bringing the educational doll along.  This year the doll has a whole new wardrobe and a stroller, so transporting it will be much easier than previous years.  It is always a great conversation starter, wherever it goes.  We've started dialog with police officers, social workers and lots of others seeing it.  It DOES look very real and has been mistaken for an actual baby!

We will be having our monthly meeting on the third Saturday of March, which is the Saturday after Brain Awareness, which will be nice.  I'm sure that we will have a lot to talk about.

'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.

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.

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.

PBS: Frontline Rerunning 'A League of Denial'

Just heard that Frontline is going to be rerunning the documentary about CTE, 'A League Of Denial'.  It is an excellent piece about the growing body of information about CTE, resulting in large part from concussions during contact sports--like football.  Definitely worth seeing.  Every parent with a child even considering contact sports, at any age, should watch this piece at least once.

Unfortunately, they don't mention other issues, like acquiring hydrocephalus & what that means over the lifetime of someone who has acquired it.  As we always say, every case is unique, but life without it doesn't have nearly the challenges over a lifetime.

This documentary can really open up a vital discussion about head injury in general & how it relates to contact sports specifically.  They also discuss the false sense of security provided by helments & touch on the risks for those who DON'T use helmets--like cheerleaders & soccer players.  Sad to say, one of the shortcomings is that they do talk about the 'right way' to head a ball, which is also simply wrong.  It was long ago proven that heading a ball, especially without a helmet, DOES cause frontal lobe damage.

SHAKEN BABY SYNDROME & HYDROCEPHALUS

SHAKEN BABY SYNDROME & HYDROCEPHALUS

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.

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. 

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.
  

SEPTEMBER MEETING--REMINDER

 

 

SEPTEMBER MEETING REMINDER

 

 

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!

 



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).