SEPTEMBER MEETING

September is National Hydrocephalus Awareness Month!

The September meeting was nice.  It was great seeing a new face.  Hopefully we will see more in the future.

We discussed a lot of things at the meeting, specifically about shunts and the very real possibility of future surgeries, as well as living without shunt problems for long periods.  Basically, the old insurance belief that we ALL have shunt failures every 18 mths, requiring surgery, isn't accurate.  Those of us living with (& without) shunts know that things could always change at a moment's notice, but life is definitely worth living to its fullest!

We also talked a bit about the history of the modern shunt and how life was before the early 1950's.

We also discussed a case in the news this last week, updating information about Christopher Harris, a young man who was severely brain damaged due to an overzealous police officer's actions almost 3 yrs ago.  The officer's actions took Mr. Harris from a young man in the early years of his career & a newlywed, to being severely brain damaged, requiring round the clock care for the rest of his life.

Hard to believe that there are only three meetings left in 2012!  2013 will be here before we know it.  I'm including the remaining 2012 schedule here.  We always meet on the third Saturday of each month in the Casey Room at Swedish Hospital's Cherry Hill Campus (17th & Jefferson in Seattle) from 12:45 pm to 3:00 pm.  Drop ins and children are welcome.  We welcome anyone wanting information about living with the condition of hydrocephalus, however it is acquired.

• October 20th
• November 17th
• December 15th

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

This was a wonderfully productive meeting!  We discussed Hydrocephalus Awareness Month (Sept) & how to promote it & the group.  We brainstormed some ideas.  Unfortunately, the state of Washington doesn't do anything to promote Hydrocephalus Awareness Month, or hydrocephalus in general.  I tried generating some interest in it several months ago, hoping for a more supportive response.  Disappointing, but only proves that there is a need for more public awareness!

We also discussed aspects of shunts--in terms of pain, itching & post-surgical responses we've had.  Very interesting.

We also discussed Kathi Goertzen's passing & her courageous fight against her agressive (benign) tumors for the last 14 years.  Our group's thoughts & prayers go out to her & her family.  Her public memorial will be August 19th at 1 pm, at Fisher Pavillion near the Seattle Center.  Specifics can be found at KOMO TV's website.

Along the same lines, we talked about how some tumors can cause hydrocephalus.

We also discussed different types of seizures some of us have.

Again, it was a very interesting, productive meeting.  We look forward to the Sept. meeting!

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!

Summary of the July Meeting

Great July meeting!  We had a small meeting, but a very successful one.

Among the topics we discussed was the use of scans on kids.  A recent incident at Tacoma's Mary Bridge Children's Hospital inspired the discussion.  Briefly, a small child was taken to Mary Bridge after a fall from an upstairs window.  It wasn't known if the child ever lost consciousness, but he was crying & vomitting.  The ER doc who treated him, allegedly, didn't feel that any scan was necessary, despite the classic symptoms of a head injury & the specifics of the situation.  Ultimately, the child died & an autopsy discovered that he had a clot that was putting pressure on his brain, ultimately killing him!  Our group's hearts go out to the family of this child.

Something that was also discussed, as part of this topic at the meeting, was that there are lots of different types of scans, some of which don't deliver the level of radiation that the hospital/doctor talked about & was mentioned in some of the news reports of this.

We also discussed our group's desire to get some publicity focused on us for September's Hydrocephalus Awareness Month.  Unfortunately, our state government doesn't do much to highlight the issue.

I've been updating our information and added some resource lists to our own group's focus on public awareness & reaching out to those of all ages who are living with hydrocephalus, their loved ones & caretakers.

Looking forward to the August 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.