November Meeting: Happy Thanksgiving!

As always, it seems like only yesterday we were looking at the October meeting coming up.  Doesn't seem like November is here already!  This month's meeting will be held 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, Seattle).

Friends, family members, caregivers and those, of all ages, living with the condition of hydrocephalus are welcome to attend.  Drop ins and kids are welcome.  We will be having one or two members calling in during the meeting.

Hope everyone has a great Thanksgiving.

LOCAL FOX NEWS FEATURE ON TBIs & FOOTBALL

The feature on the local Seattle Fox News station was quite interesting.  Locally this has been an issue in the news a lot, with an increasing amount of coverage being given to the research being done at the University of Washington on the subject.  One of the research projects at the UW has evolved into a business, specifically developing a helmet to be used in sports.

The serious approach to the development and implimenation of this helmet is interesting.  But Dr. Ellenbogen and others have also always mentioned that more concussions and other TBIs are acquired through riding bicycles than through football, specifically.  But honestly, ANY activity in life can involve a TBI at some point, some more damaging than others.

I always emphasize education and prevention, because as good as any helmet may be, it isn't the whole answer.  Everyone, parent, child, young adult, adult--needs to have the information and take it seriously.  Part of the problem, in my opionion, is that if someone has no experience with TBIs or the aftermath, they aren't going to come at it with the whole picture of potential issues.  There will always be those who will disregard, or feel they have a balanced point of view,  and those who feel the risks are too much, for them or their loved ones.   It is a personal choice.

I felt that the FOX feature was interesting, thorough and worth the time.

One of the reasons for the attention to this issue locally is the recent loss of Evergreen High School Sr., Kenny Bui, after being injured in a football game.  Our group's prayers and thoughts go out to Kenny Bui's family and friends.

SEPTEMBER IS NATIONAL HYDROCEPHALUS AWARENESS MONTH

This month's meeting I want to discuss ideas for  September's National Hydrocephalus Awareness Month.  I've sent out some feelers, but got no responses, for some ideas.  I was hoping to have heard back from some of them, either way.

I would like to see some of our members doing some radio and print interviews, if they are more comfortable doing that.  I had hoped that one of our members, who is a professional writer and reporter, would have been able to write something about living with the condition.

There should be some community events that we could take part in.  I've tried, for a couple of years now, to generate some interest in some of the area's magazines and online sites.  Unfortunately, people think of hydrocephalus as 'just' a birth defect and nothing more.  They also assume that we all have spina bifida and that we are all living lives of suffering.  I see Awareness Month as having the potential to defy those assumptions and stereotypes.

I know that articles aren't going to be a magical answer to this, but they could contribute to enlightening people about the facts of hydrocephalus.  Particularly that it can be acquired at any time in life.  Unfortunately, I haven't been able to find some answers to my own questions--like the numbers for acquired hydrocephalus in various age groups, excluding congenital.  That includes finding out the numbers for hydrocephalus acquired after a concussion, or several.  When it comes to the latter, research is still being done that could answer some of those questions.

September feels a long way off still, but 2014 is going by so fast!  Doesn't seem like it is July and Seafair time again, already.

As always, this month's meeting will be on the third Saturday of the month, from 12:45 pm to 3:00 pm in the Casey Conference Room at Swedish's Cherry Hill campus (17th & Jefferson). 

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.

 



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).

REMINDER: May Meeting on May 18th

REMINDER FOR MAY MEETING

This month's meeting will be May 18th from 12:45 pm to 3:00 pm in the Casey Room at Swedish Hospital's Cherry Hill Campus.  As always we welcome drop ins and anyone interested in the condition of hydrocephalus.  We also welcome children, as well as adults and those, of any age, living with hydrocephalus.

We look forward to seeing everyone!

The April meeting was very good.  As always, we had some lively discussions about aspects of living with hydrocephalus and caught up with everyone who attended.  We missed those who couldn't attend.  Maybe this month...

Unfortunately, my car was broken into during the meeting.  No one was hurt, just some minor (replaceable) items were taken.  The thieves even locked the car back up when they left!  This has never happened before and the car was parked in the parking garage!  Hoping it won't happen again.

I've changed my contact email, from hydropr61@hotmail.com to hydropr61@gmail.com.  Too many 'issues' in getting my hotmail account back, for the second time this year.  So I can be reached either by either gmail.com account (gf4lyfe@gmail.com or hydropr61@gmail.com). 

Locally, one of the tv stations aired a piece about a Swedish study on elderly adults and falls.  They talked about the increase in traumatic brain injury (TBI) to seniors who fall.  Very interesting study.

Hope to see everyone on the 18th!

Brain Awareness Exhibit

BRAIN AWARENESS OPEN HOUSE--SO NEAR!

The 2013 Brain Awareness (BAW) Open House is coming up on Tuesday, the 5th of March!  Can't believe it is coming up so soon.

I picked up some of the giveaway items, so kindly donated by KING5 Television, for our exhibit.  One of our topics this year is about how weather (specifically the barometric pressure) impacts those of us with shunts.  It ties is with the weather dvd that KING5 donated.  Their donations are always welcome additions to our table(s) at the event.

We still have some giveaway items from last year and are expecting some items from other sources in the coming days.  We'll have lots of 'stuff', which is always great.

We will be seeing several hundred kids from Washington state schools--everything from private and home schooled kids to public school students.  In addition, we will be seeing lots of parents and teachers.

I'm already brainstorming for next year's exhibit.  Hard to believe that we've been part of BAW for over 12 years.  How time flies!  Lots of surprises, hopefully. 

I'm hoping to be able to post pictures from this year's event on the blog shortly after returning from the event.

Yesterday I found a number of periodical articles on hydro that were published in February, 2013.  I just skimmed them, since I was at the library and running out of time on the library computer.  I'd love to include some of the articles and information in our BAW exhibit.

September: Hydrocephalus Awareness Month

Hard to believe that September is here already!  How 2012 is flying by.

September 1st, the beginning of Hydrocephalus Awareness Month.  I sent a reply to Seattle's Mayor McGinn about it, as part of a response to his newsletter that I recieved in today's email.

I'm hoping to make contact with someone in the Neuro department at Swedish Hospital this week about ideas for bringing more awareness to hydrocephalus in the community during the month.

Look forward to this month's meeting on the 15th.

Take care.

August Meeting Coming 8/18/12

There is going to be a lot to talk about this month.  The subject of the passing of Kathi Goertzen, a beloved Seattle icon, this week, will definitely be a topic of conversation.  Kathi lost her fourteen year battle with a benign brain tumor this week.  Brain tumors, benign or not, can be a cause of hydrocephalus.

The group's thoughts are with Kathi's family, both her professional and personal.

Personally, I first met Kathi in 1981 when she was a reporter, at the closing of Queen Anne High School, a school we both attended at different times.  Over the years I watched her go from reporter to news anchor, being a community fixture.  Over the years, we met in passing a few times.  It was always a pleasure.  The last time was a few years ago when I participated in a program at KOMO TV, with a panel of viewers & the news team.  Again, it was a pleasure.

We are also going to be talking, again, about brain injury being a cause of the onset of hydrocephalus with another incident of a suspect being hit about the head.  The message needs to be getting to those who set the tone for the SPD.  But they don't seem interested in this area of discussion, unfortunately.

Last month, we discussed the use of brain scans on children, after an ER doctor, allegedly, refused to prescribe a scan to a young boy who had fallen from a second or third story window.  The doctor, allegedly, said that they didn't do scans because of the radiation exposure to a child.  Unfortunately, in this case, the child (who presented with classic head injury symptoms) was sent home & died.  There are scans that don't expose the patient to large doses, or any radiation!  I find it difficult to believe that the doctor in question didn't know that or that he was unaware of the classic symptoms of head injury.  The autopsy results were that the child DID have a brain bleed.

Looking forward to this month's meeting!

July 2012 Meeting Reminder

Just a quick reminder that this Saturday is the July meeting at Swedish Hospital's Cherry Hill Campus (17th & Jefferson) in Seattle.  We meet from 12:45 pm to 3:00 pm in the Casey Room.  We welcome drop ins & children. 

I should have included that we discussed folic acid and the lack of media attention given to its importance in lessening the incidents of neural tube defects, which spina bifida & congenital hydrocephalus are just two examples.  Every women, of childbearing age, should know her folic acid levels and consult her physician (GP, OB/GYN) about what level should be maintained.

One of the main reasons for 'enriched' flour being used in so many of our prepared foods and ingredients like flour, is so that ALL women get additional folic acid.  There are also a variety of whole foods that are easily accessible in the produce section that are higher in folate (folic acid) than other foods.  I'll include a list later.

February Meeting & BAW Update

February's meeting was great!  We had a couple of new people, from out of the country, visiting the Seattle area attend.  It was great seeing them.  Hope to have them visit again in the future.

Sorry about January's meeting being cancelled, but the weather was a huge problem.  Couldn't figure out how to navigate the hills with so many being impassable.  Thankfully, all traces of snow & ice are long gone!

Preparing for the Brain Awareness Open House at MOHAI (the Lake Washington facility, they haven't moved to South Lake Union, yet).  The event is open to grades 4 through 12, pre-registered.  Last notice we had from the organizers is that there will be 600 kids attending.

We will have two tables and quite a large number of participants to talk to the kids, teachers & parents about hydrocephalus & living with the condition.  We will also have shunt reps from Medtronic available to talk to them & show them about shunts and explaining how they work.

For the first time we are going to have a couple of giveaways/door prizes.  It will most likely be books by Sherman Alexie, a popular author for the middle school & high school kids, as well as adults.  Sherman has also lived with hydrocephalus throughout his life, writing about his experiences growing up on the reservation & living with hydrocephalus.  We would love to have him participate in the event, but he isn't available.

I'm still hoping to have my camera fixed by March 7th, so I can take some pictures to post here.

Really looking forward to a busy March!