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.

Hydrocephalus Support Group Inc. Update 1/3/17

Sorry I haven't updated for awhile.  A lot has been going on.  My mother's health declined and she passed away in late December.  I was her sole caretaker, so much of my time was taken up with that.

We are going to be participating in the 2017 Brain Awareness Open House in March at the UW.  Looking forward, as usual, to that.  I've been posting a lot of photos and information from Eric Chudler, the event coordinator, on Facebook.  There should be a lot of great, new information at the event this year.

This year's meeting schedule has also been confirmed, thanks to Jennifer at Swedish Cherry Hill.  I'll be posting that next time.  Generally speaking, we will be meeting on the third Saturday of each month, from 12:45 pm to 3:00 pm.  The dates will be posted later.

Looking forward to this month's meeting on the 21st.

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.

Summary of September Meeting

As usual, we were a small meeting but got a lot accomplished.  We discussed ways to increase our visibility during the rest of National Hydrocephalus Awareness Month.  There are so many good ideas, but they take more money and prep than we have.

We also discussed shunts and the history of shunts.  Actually, the history is very interesting and only makes us appreciate even more the time(s) we were born in.  As 'barbaric' as some feel today's shunts are, they were much more so hundreds of years ago.  Today's doctors have scans and imaging that weren't available until the last 40 yrs or so.  Previous to that surgeons were working 'blind'.  Prior to those days, there were all sorts of methods tried for managing hydrocephalus that WERE barbaric and risky.

We talked about the different generations of hydro survivors.  Those of us born before the shunts developed by people like Roald Dahl (yes, the author & former husband of Patricia Neal), in the 1950's being 'first generation'.  Then those who were born after the CT scan became an available tool being second generation, those born after the MRI and now those born after the programmable shunt.
As we've discovered the evolution of hydro treatment and management, we've really come to appreciate the research and development that has taken us this far.  It isn't perfect, but nothing is.  It gives families and patients options though, as well as neurosurgeons.  There is far less over draining and under draining.  We can recline and not have to worry about whether the shunt is going to continue working or not.

I've said this before, but I would love to know what happened to the research being done on using a patient's own DNA to grow their own shunt tubing in a lab, potentially reducing the opportunity of infection or rejection of a synthetic tube.  I saw a paper on it published in the 1970's, but nothing more.

We also discussed Zika and some information that was talked about on Doctor Oz.  While so much is NOT known about the long range ramifications of the disease, it has been around since the 1940's!  It has similarities to Denge Fever.  I'm interested in how it might be a cause of hydrocephalus.  That is a whole topic unto itself!

Looking forward to October's meeting.  Hope to see faces, new and old there.  As always, it will be on the third Saturday, from 12:45 pm to 3 pm in the Casey Conference Rm at Swedish Hospital's Cherry Hill campus (16th & E. Jefferson, Seattle).  We offer moral support and information to families, friends, caregivers and those (of all ages) living with the condition of hydrocephalus.  We welcome drop ins and those with an interest in brain issues, particularly hydrocephalus.

September Meeting! National Hydrocephalus Awareness Month

Anticipating the September meeting coming up on Saturday, the 17th, from 12:45 pm to 3 pm, as usual.  The difference being that this is also National Hydrocephalus Awareness Month.  I've been posting a lot on my Facebook, taking every opportunity to share and 'like' others' work to promote awareness of hydrocephalus.

I would really like to do some tie-in promotions and several other things to generate interest and awareness.  It would also be great to get back to having an annual picnic again, as another community outreach effort.

It would also be nice to get some more of the hydro dolls and do a 'traveling' project, like the Gnome, complete with a Facebook page to 'follow' them on their travels, then auction them off at the end.

Looking forward to seeing the meeting regulars and possibly some new faces.

August Meeting

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

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

I'll have to cut this short for now.

July Meeting

The July Meeting will be held in the Casey Conference Room at Swedish Hospital's Cherry Hill campus (17th & E . Jefferson, Seattle) , from 12:45 pm to 3 pm.  We offer moral support and information to families, friends, caregivers and those (of all ages) living with the condition of hydrocphalus.  Drop ins are welcome.

Great way to start off the summer!

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!
 

MAY MEETING CANCELLED

The May meeting has been cancelled,  Kim is preparing for a convention out of state and I was injured last week.  Sorry for the inconvenience.  Looking forward to the June meeting,.

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.

Questions About ZIKA

I'm sure that we'll be discussing ZIKA at the February meeting.  ZIKA is the mosquito-borne illness that is primarily in South America now, but has been found in the US.  The illness is particularly dangerous to pregnant women and their unborn children.  It is known to cause, among other things, serious birth defects--including microcephaly.  It can impede brain development in unborn children.

So little is known about this illness, but it IS getting much needed attention.  It raises a lot of questions.  Could this impact the number of children born with other brain issues--like hydrocephalus?  I'm sure that we can come up with other questions before the next meeting!

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.

2016 Meeting Schedule

2016 Meeting Schedule

All meetings are from 12:45 pm to 3:00 pm in the Casey Conference Room at Swedish Medical Center's Cherry Hill campus (17th & E. Jefferson).  There is limited street parking, in addition to a parking garage.

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

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

March 17th we will be participating in the UW's 2016 Brain Awareness Open House at the HUB Ballroom on the University of Washington campus from 9:30 am to 1:30 pm.  We will, as always, be seeing several hundred school age kids, along with their parents and teachers, to talk about brain health and living with hydrocephalus.  We also let participants know that hydrocephalus can be acquired at any age.

Happy 2016!!

'Concussion' The Movie

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

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

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

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

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

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

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

December Meeting

Happy birthday, Kim!!

This month's meeting was very productive.  We talked about possibilities for the 2016 Brain Awareness Open House.  The event will be March 17th, from 9:30 am to 1:30 pm in the UW's HUB Ballroom.  We will be, as always, seeing kids from grade school through high school, as well as parents and teachers.  Hard to believe we've been doing this for 20 years!

We are also looking for more ways to increase visibility in the community.  All too often, hydrocephalus isn't talked about.  This led to the discussion(s) about many ways that hydrocephalus is acquired.  This includes any type of head trauma.  Yes, this is where our discussion usually leads, but it is still very relevant.  It also includes the education of first responders.

We also talked about Chris Harris' death and the horrific incident that brought about his disability--including his TBI.  Again, it brings things back around to training of first responders and the myth about 'retraining' people who have an inclination towards violence and excessive force in dealing with 'suspects'.  Shandy Cobain was also 'retrained' after kicking a 'suspect' about the head (and genitals) while yelling racist comments--then expecting the guy to 'walk it off'.  In both instances, it was mistaken identity.  In one case, it cost a man his life and livelihood, while the other was simply 'lucky' to come away without life altering, physical damage.  Chris Harris' offender is still part of the Sheriff's department and has, according to news reports, had other excessive force issues.  Big surprise!

I would like to see us get a group together to go to New Day NW, a local talk show.  I would also like to see them address hydrocephalus in on their health focus Wed. show.  It would also be great to have a corporate sponsor for some marketing projects.  Every year we talk about wanting to have our own reusable bags, tee-shirts and giveaway items at Brain Awareness.

I'll be posting the 2016 meeting schedule shortly.

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!