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.

October Meeting

The October meeting will be held on the 15th (the third Saturday of the month) from 12:45 pm to 3:00 pm in the Casey Conference Rm at Swedish Hospital's Cherry Hill campus.  We offer moral support and information to families, friends, caregivers and those (of all ages) living with the condition of hydrocephalus.  Feel free to drop in!  Kids are also welcome.

June Meeting

This Saturday (June 18) will be this month's meeting.  Sorry about having to cancel last month's meeting.  As usual, we will be in the Casey Conference Rm at Swedish Cherry Hill campus from 12:45 pm to 3:00 pm.

Part of the reason for last month's cancellation was my arm injury.  I dislocated my left arm in an accident in the Safeway parking lot.  It involved our car, a lock on one of the doors, a shopping cart and a pointed curb.  I got a dislocated shoulder, black eye, sprained wrist & sprained knee out of it.  Just got rid of the sling today and I start physical therapy tomorrow.

I do want to say that the Seattle Fire and the EMTs did a great job.

I've been keeping up with my Facebook page and the LinkedIn page.

Fortunately (?), now I have the ability to be on the computer a bit longer than I was there for awhile.

I look forward to seeing everyone on Saturday!
 

April Meeting Announcement

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

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

Looking forward to seeing everyone!

2016 UW Brain Awareness Open House

2016 Brain Awareness Open House


Another successful year's event!  Thanks to all who attended (Dave, Frank, Kim & Bobbe), as well as the students, parents and educators.  Everyone I spoke with had a good time.

We had lots of interest in the shunt display, thanks to Dave from Medtronic.

There were a lot of inquisitive kids out there, not just interested in the 'free' stuff we had to hand out.  It was great talking with kids who really wanted to know about hydrocephalus and what it was like to live with it.

Looking forward to 2017 already!

Preparation For Brain Awareness

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

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

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

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

February Update

We wanted to thank the Hydrocephalus Association for sending us material(s) for the March event.  Brain Awareness Open House at the UW will be March 17th, from 9:30 am to 1:30 pm and we are expecting several hundred kids (grades 4-12) during the one day gathering.  There have been so many new brain oriented stories and ideas in the news over the last year, there is a lot to talk to them about!  Zika is just one of those.

We would also like to thank, in advance, Medtronic, for their annual participation.  It is always a pleasure to work with them on our table.

I would personally like to thank our members who come every year to talk with the kids and adults about living with the condition of hydrocephalus.  It is always great to see faces we don't always see because of distance, on a monthly basis.

As always, we are constantly looking for ideas for this year's, as well as the 2017, event(s).  I've seen a lot of great things online, but our budget wouldn't cover them.  The brain version of popular games, cups, mugs, tee shirts, etc.  All fun ways of opening up discussion about something most people don't give a second thought to.

New Day NW/King5

How disappointing, on Wellness Wed. of New Day NW, their 'expert' on aging and brain health failed to mention Normal Pressure Hydrocephalus (NPH).  Since treatment is too often delayed because of misdiagnosis, commonly mistakenly diagnosed as Alzheimer's or Parkinson's.  Hydrocephalus, while not curable, IS manageable and treatable.  It isn't an automatic death sentence.

I've been hoping that a show, like New Day NW, would embrace hydrocephalus and showcase some of our members who have overcome great odds to live very full lives with their condition.  Unfortunately, hydrocephalus remains one of those conditions (not a disease) that is kept shrouded in mystery and secrecy.  We are constantly having to blow myths and stereotypes out of the water.  One of them being that we automatically have less productive lives.

'Concussion' The Movie

I saw an interesting interview on GMA with Dr. Omalu.  His research and p.o.v. are SO important to the future of brain health, worldwide.  This isn't just an issue about the NFL, although that is where a lot of the focus is.  Concussions, and the long term aftermath, isn't just about contact sports, but about head injuries of any kind.

During his interview, Dr. Omalu demonstrated with a balloon in a jar, what happens to the brain itself when it gets rattled around inside the brain.  That isn't normal.  The cerebral spinal fluid is a cushion, but it has its limits.  What is rarely discussed is that the interior of the skull isn't a smooth surface.  It is jagged and rough, which can lead to bruising, tearing and bleeding of the brain.  That can also lead to everything from mild damage to death.  That can also include swelling.  All of this can lead to dramatic life changes or the end of life.

Dr. Richard Ellenbogen, a neurosurgeon, has repeatedly pointed out that this isn't just about football or traditional contact sports.  CTE can result from other activities, like bicycle accidents or any other brain trauma.

This still comes down to the real 'cure' for conditions like CTE and hydrocephalus, is prevention.  Once the damage is done, it is done.  Every case is unique, so while some will have mild impairment, others will have massive life changes, or even death.  The focus on 'cure' after the fact needs to be tempered.  Training first responders is vitally important--as we have seen with those who have been 'in charge' of determining concussion protocols and failing to do their job.  We've seen that on the field in football.  More than once, I've seen the footage of an NFL player 'down' on the field, "out cold" and seen signs (however slight) that the player is having a seizure--not just "out cold".

We've also heard the reports that Freddy Grey (sp) was heard 'banging' in the van while handcuffed.  Chances are pretty good that what the officers heard was Mr. Grey having a seizure and not properly responding to it.  They have no idea what was going on, they simply assumed that it was Mr. Grey's choice.  Seizing isn't the person's choice.  It is electrical misfires in the brain that happen when the brain is assaulted or because of damage.  Treatment does NOT include putting anything in the person's mouth or attempting to stop the seizure, only making sure that the person is on their side and not being injured during the seizure itself.

There are over one hundred types of seizures someone can have.  They can acquire the condition (it isn't a disease) at any time of life, usually because of an brain injury of some type.  Having untrained people around can be worse than doing nothing!

I'm hoping that 'Concussion', the movie, helps to break stereotypes and leads to the general public learning more about the brain and appreciating its unique and priceless part it plays in everyone's life.

RERUN: FRONTLINE'S REPORT ON CTE

PBS ran part one of Frontline's report on CTE and the history of its discovery.  It is really a great report, one that pulls no punches.  Worth seeing again (and again)!

This is definitely something to have in one's personal collection/library.  As always I would like to see the connection made between head injuries and acquired hydrocephalus.

I'm sure that this is being shown again since the movie based on Dr. Omalu's work is coming out soon.  It wasn't lost on me that Dr. Omalu did an interview on GMA around the same time.

I disagree that football is going to be killed off by the publicity/awareness.  There will always be those who don't believe that CTE is a real risk for themselves or their children--no matter what.  Just as there will always be those parents who don't believe that there is an increased risk for their 4 year olds in playing pee-wee football.  There will also be those cheerleaders, soccer players, etc. who won't believe that any of this would/could ever happen to them.

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!

VIOLENCE IN THE CLASSROOM...

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

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

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

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

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

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

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'!

September 2015 Meeting

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

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

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

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

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

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

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

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

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

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

Monthly Meeting Reminder

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

'Inside The Brain' Viewing

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

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.

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.

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.

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.