March Meeting

MARCH 2014 MEETING

 

 

 

As always, it was great seeing familiar faces at the meeting.  Also always look forward to new faces at each meeting.

 

We reviewed how the Brain Awareness open house event went.  While there were a few less kids, parents and teachers there this year, we all agreed that it was very successful.  As I've said before, we did miss the regulars that were unable to attend this year's event.  We are already looking forward to next year!

 

 

We  talked a bit about other issues, like CTE.  It seems that there is something new discovered about CTE almost daily!   It was great having some hand out materials from the Sports Legacy Institute (SLI) at our table this year.  The hand out materials were taken by almost everyone--especially parents and teachers.  There were a few coaches in attendance, so we had a tie-in with the CTE issue.

 

 

The Sunday Seattle Times (March 16th) had a very compelling article about a former Seahawk who was found to have died from complications from CTE.  I'm hoping to be able to reprint the article or at least have a link in the future.

 

One of the tv stations, locally, also did an interview with a former Olympic soccer player who had to leave the sport because of complications from her one and only concussion.  She still has complications years later!

 

Looking forward to April's meeting.  2014 is going by so fast!

 

 



BRAIN AWARENESS EVENT--2014

BRAIN AWARENESS OPEN HOUSE EVENT, 2014

 

 

 

The Brain Awareness Open House event at the University of Washington was a great success!  We saw several hundred students (grades 4-12) from Western Washington schools.  Answered a lot of questions about hydrocephalus and handed out lots of literature about all types of the condition.

 

 

We saw kids from 9:30 am to 1:30 pm, but it didn't seem as chaotic as it has in some years past.  Don't get me wrong, we still saw throngs of kids, teachers and parents during the event, which is always great.  As always, it was tiring, but in a good way.

 

Unfortunately, my surprise didn't happen, but I'm looking forward to next year.  I'm hoping that the same surprise will happen at next year's event.

 

This year's event had exhibits that were returnees, as well as new ones.  The preserved brains and spinal cords were back.  Very popular with the kids, particularly the grade school boys!

 

I should have photos to add to the blog shortly.  The organizer took some and Dean Andersen, Kim's dad, took some.

 

 

Again, I want to thank Medtronic for sending the squishy brains and 'stuff' to hand out.  We missed our usual shunt rep, but we soldiered on with our foam head and shunt demo.  I'd also like to thank National Hydrocephalus Foundation's (NHF) Debbi Fields for sending us newsletters and 'stuff' to add to the table.  I also made a point to hand out the Sports Legacy Institute (SLI) information about concussions.  That was very popular with teachers and parents.  We also has some updated hydrocephalus information.

 

Looks like we're going to be doing at least one class presentation at the end of the month.  It should be interesting, being able to answer questions from the kids and give them a more personal perspective from those of us living with hydrocephalus, as well as a parent or two with many years of experience.

 

I'm going to go take a nap now.  I'm SO tired!!

 



2014 BRAIN AWARENESS OPEN HOUSE EVENT--COMING SOON!

Brain Awareness 2014 Event

Hard to believe that the UW's Brain Awareness (BAW) Open House event is just a week away!  We will be having a booth there with lots of information and 'stuff' relating to hydrocephalus--including members of our group.  We are looking forward to talking with parents, teachers and Western Washington students (grades 4-12).  It is our big, annual outreach event that we always look forward to doing.

I just got a huge box from Medtronic and a package from the National Hydrocphalus Foundation (NHF).  Thanks in advance to Leanne, Carli & Dave at Medtronic for their assistance.  Medtronic has been part of our booth in years past, unfortunately, they won't have a rep there this year, but looking forward to 2015 already!  Thanks, in advance, too to Debbi Fields at NHF for sending back issues of the newsletter & the pamphlets.  Thanks, also, to Sports Legacy Institute (SLI) for their literature to include in our exhibit.

Still lots of work left to do, although I'm already getting things started for next year.  I'm hoping that our 'surprise' will come through for this year's booth.  If not, we'll plan on it for 2015.  I'm hoping that we'll also have pictures from the event to post here.

We're looking for corporate sponsorship to make some ideas for 2015's event happen.  If anyone knows of any companies or individuals with an interest in brain issues, generally and hydrocephalus, specifically, please email me & let us know.  As always, I do encourage those with an interest to also attend one of our monthly meetings.  Drop ins & kids are welcome.  We welcome anyone with an interest in brain issues and hydrocephalus.

We will be spending part of the March meeting reviewing the open house event, but otherwise, we have open discussions.



February Meeting

FEBRUARY 2014 MEETING

We discussed our plans for the UW's Brain Awareness Open House event on March 4th.  We will be meeting several hundred students from Western Washington schools, which often includes some home schooled kids, to talk about the brain.  Our exhibit is focused, of course, on hydrocephalus.  We also tend to talk about acquired hydrocephalus through brain injury.  What little most people know of hydrocephalus rarely includes the realities of brain injury and acquired hydrocephalus.  In coming years I'm hoping that we are able to have literature about CTE, which right now is talked about mostly as it relates to concussions and sports--specifically football, however it is increasingly being found in cheerleaders and others who have participated in youth sports & who suffered even one concussive event.  That can also apply to veterans.

We talked among ourselves about CTE and acquired hydrocephalus--mostly as it relates to young folks.  We often talk among ourselves about the older population acquiring what used to be referred to as the spontaneous form of hydrocephalus, where a head injury or concussion wasn't involved.  Now it is referred to as Normal Pressure Hydrocephalus (NPH).

Unfortunately, as I've mentioned here before, NPH is all too often mistakenly diagnosed as Alzheimer's, Parkinson's or some other form of dimentia, which only delays critical treatment that can minimize the damage caused.  But that needs to happen in a timely manner to be most effective.  We've talked at meetings about people we've seen who have many of the indicators of NPH, but who have been diagnosed with Alzheimer's, Parkinson's or a "Parkinson's-like" syndrome.  The shuffling walk, downward look, along with signs of memory loss can all indicate NPH.

We also talked about members who live far away and are unable to make many meetings & often don't attend the Brain Awareness event, but who have in the past.  We would love to see them on a more regular basis & see them at the event in March.  Personally, I'd like to see some articles in area publications profiling a few of our members, in general, as part of our outreach and because these are folks who have very compelling stories to tell about overcoming obstacles.

I sent out notices to the media about our involvement with the Brain Awareness event, hopefully we'll be seeing some of them there or at least hear from them in the coming weeks.  Again, a few of our members have said they would be willing and interested in telling their stories as a way to generate awareness of the condition, as well as the group.

We had the pleasure of a conference call with one of the group's friends who lives on the east coast.  It is always great to talk to friends and members of the group who are far away, but who still want to participate.

I did hear from Medtronic, the shunt folks.  We will have a rep at our booth next month.  It will be great to have Dave back for another year.  He shows the kids how a shunt works and explains why it is used.  Our members can talk about the history of the shunt and Dave can talk about the most up to date technology in treating hydrocephalus.

Hopefully, our surprise for the exhibit will happen.  I'm crossing my fingers.

Looking forward to the March meeting where we can talk about the event and start planning for 2015!  I'm also hoping that we'll have pictures to post here & on our members' Facebook pages.

FEBRUARY MEETING REMINDER

MEETING REMINDER--FEBRUARY

Hard to believe that it is February already!  This Saturday will be our second for 2014 and hopefully there will be a lot of new & familiar faces around the table.  It will also be our final meeting before the UW's Brain Awareness open house event, March 4th.

I'm looking forward to this year's Brain Awareness event.  Our booth should be very interesting & we will be meeting lots of Western Washington state kids (grades 4-12) during the four hour event, as well as parents & teachers.  It is always a fun event for us.  I'm hoping that a surprise I've been working on for awhile will happen at the event this year.  Crossing my fingers.

As always, I'm trying to get the meeting & the group listed as a resource on a number of fronts.  Not hearing back from a lot of people, but what else is new?!  It would also be great to find some funding for some aspects of events, like Brain Awareness, to help us do more every year with our booth.

It seems that with every new development in the CTE & brain injury stories, we find a connection to hydrocephalus.  Adding to that, the Normal Pressure Hydrocephalus (NPH) issues and we are finding more & more that includes hydrocephalus.

I am still shocked that there is even talk out there (some supposed scientists included) saying that Shaken Baby Syndrome isn't real.  Huh?!  The basic facts are pretty clear, the brain & spine of a child aren't developed yet & aren't strong enough to endure shaking.  Add to that the fact that the interior of the skull is rough & jagged, not rounded & smooth like the exterior & it is a disaster ready to happen.  The soft brain tissue was never meant to bang against the interior of the skull.  Even slight bruising or bleeding can cause serious, long term damage--particularly in children.

CTE is, in so many ways, the same thing.  The brain was never meant to make contact with the skull's interior--ever.  While someone may be functional after a blow to the head, it doesn't mean that there hasn't been any damage.  Some of that damage may not show up immediately, or even for years.  While helmets are giving a false sense of security to parents, coaches & players--of all ages, there is a sad reality that is increasingly difficult to ignore.

I will admit that it is a bit frustrating to see stories being done on the news about Alzheimer's & Parkinson's, with no mention of NPH--which is all too often missed because medical professionals mistakenly diagnose 5-15% cases of NPH as either Alzheimer's or Parkinson's.  NPH is treatable, especially if found early!  

I recently saw a tv interview with a victim of abuse.  As a child she had been slammed, head first, into a floor on several (?) occasions.  The interviewer attributed tremors & physical 'ticks' to the emotions in telling her story, but I was curious about the possible damage done to her head & spine with this abuse.  I noticed some of those tremors & ticks when she wasn't talking about the abuse as well, just more subtle ones.  Just an observation.

Hope to see everyone on Saturday.  For potential newcomers, we meet from 12:45 pm to 3:00 pm in the Casey Conference Room at Swedish Hospital's Cherry Hill campus (17th & E. Jefferson, Seattle).  Drop ins & kids are welcome.  We also welcome parents, families, caregivers & those wanting information about the condition of hydrocephalus, as well as those (of all ages) living with the condition.

NAT GEO MAGAZINE BRAIN ARTICLE

NATIONAL GEOGRAPHIC MAGAZINE ARTICLE ON BRAIN

The February, 2014 issue has a great cover article on the brain and scientific research.  Definitely worth the read.  They talk about upcoming possibilities, as well as recent developments.  Didn't see anything about hydrocephalus specifically, but still it was very interesting.

I know that I've been accused of being against brain research, which is NOT true.  I'm just frustrated by this 'need' some have to 'fix' hydro and who see all of us with it as needing to be 'fixed'.  There are so many breakthroughs yet to come, generally, in neuro-research, I find it facinating.  There was a time when the medical community knew nothing of folic acid or its role in congenital hydrocephalus.  Knowing about it has greatly reduced the number of congenital hydrocephalus.  If only those in the media would define what 'neural tube defect' is, it would be more clearly understood.

No matter what the breakthroughs in neuroscience research are when it comes to the brain in general and hydrocephalus specifically, there are so many causes (accident, concussion, TBI, spontaneous--NPH...) that there can never be one definitive, one-size-fits-all 'cure' out there.  Prevention is the best option, which means education and knowledge.  I've mentioned to a researcher about my theory that my family may have (on my mother's side) a particularly low folic acid lcvel.  Back in 1901, when my great-uncle died of hydrocephalus at a month of age, folic acid wasn't known about.  His hydro 'just happened".  Maybe it was just a statistical occurance, but the theory could actually be fact, but that doesn't appear to be an area of interest for many researchers or their funders.

Education and being the living examples of living well with hydrocephalus is why the support group takes part in the annual Brain Awareness Open House event at the University of Washington.  We don't all 'suffer' with hydrocephalus, we live with it and have productive lives.

PLANNING FOR BRAIN AWARENESS EVENT

PLANNING FOR THE BRAIN AWARENESS EVENT IN MARCH

 

 

Plans for our exhibit are underway.  As always, we have the dream list of what we would like to have at the event and the more realistic plan.  This year we have a couple of opportunities to have some giveaway items and some personal appearances.  Unfortunately, both require money.

 

 

My dream is to have our own reusable bags to give away to the kids, as well as 'stuff' to have in the bags that are brain and/or hydrocephalus oriented.  In years past we have had donated bags, which we still might have, but they always promote businesses, without our group name on them.  It would be nice to add that to the offering.

 

 

I just got an email letting me know that one of the personal appearances is possible!  Even if it would be for 1-2 hours of the event, not necessarily the whole event, it would be great to have.  Now the real challenge begins, raising the funds in a short amount of time.

 

 

I've been wanting to have this appearance at the booth for a long time and we are so close to making it happen!!

 

 



JANUARY 2014 MEETING REMINDER

JANUARY 2014 MEETING REMINDER

 

 

 

 

This Saturday (January 18th) is our first meeting of the new year!  Looking forward to seeing faces, old and new.  The meeting will be in the Casey Conference Room, from 12:45 pm to 3:00 pm.  Drop ins and kids are welcome to attend.

 

 

Planning for the UW Brain Awareness Open House event in March continues.  I'm waiting for more materials and hand outs to be delivered.  The open house event should be as interesting as in years past.  We should be seeing around 700 (give or take) kids from grades 4-12 at the event, as well as parents and teachers.  As a group, we are looking forward to being able to do some outreach and generate some interest in the brain, in general and in hydrocephalus specifically.

 

 

I've also been sending emails to every possible resource, to let those new to the hydrocephalus experience, of all ages, know about us.  I've gotten lots of positive feedback.

 

 

Conversations at this month's meeting should be interesting!

 

 



HYDROCEPHALUS SUPPORT GROUP, INC. 2014 MEETING SCHEDULE

HYDROCEPHALUS SUPPORT GROUP INC MEETING SCHEDULE 2014

 

 

 

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.