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!

 

 



December 2013 Meeting

THE 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.

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.

 



DECEMBER MEETING

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.