April Meeting

The April meeting was very productive.  It was great having one of our out of state members being part of a conference call for part of the meeting.  Always a lot of great discussion and input.

I brought the hydrocephalus doll along so Kim & her mother could take it to a health fair today in the Lacey/Olympia area.  As always, there were a few second looks & a comment or two.  One said that it was a cute baby!  Another double take was from one of the neuro staff.  Fingers crossed that the health fair goes well.

At least I'm not alone in taking issue with the Durst letter and comment about having "full blown hydrocephalus".  In some of the footage I saw of him, it is quite possible he has NPH, but that has no bearing on his mental health as it relates to the possibility of him being a murderer and using it as part of some 'insanity' defense.  We all agreed that the implication is a very negative one that needs to be cleared up.

We talked a bit about issues with doctors, GPs as well as specialists.  A common topic for us.

I brought up a speaker I saw last Friday.  My mother & I went to a lecture at one of the Assisted Living facilities in town.  The speaker was a neurologist who specializes in tremors.  The lecture was quite interesting.  It would be great if we could find a way to have him speak at a meeting or at a symposium sometime.  The other nice thing was seeing how educated many of the attendees were on brain health!

April Meeting/Durst "I Have Full Blown Hydrocephalus"

Looking forward to the April meeting on Saturday, April 18th, from 1:00 pm to 3:00 pm in the Casey Room at Swedish Hospital's Cherry Hill campus (17th & E. Jefferson, Seattle).

One topic we will be discussing will be this week's 'revelation' about Robert Durst having (in his words) "...full blown hydrocephalus" Whether his defense team is going to try spinning this as part of an insanity defense isn't clear.  I'm hoping that isn't the case, since hydrocephalus isn't relevant to any aspect of murdering people.  Insanity and hydrocephalus aren't related.  Hydrocephalus isn't 'insanity' and what a great disservice to the hydrocephalus community if they are even entertaining such a notion.

I will also be bringing along the hydrocephalus doll this month.  It will be used the following week at a health fair in the Olympia area.

NPH On Grey's!

Yeah!!  It was great seeing Normal Pressure Hydrocephalus (NPH) in a story on Grey's Anatomy last night.  It wasn't the major storyline, but they did a good job with it.  It would have been more interesting, IMO, if they would have also shown/discussed the programmable shunt--rather than just saying 'shunt'.  But we can't have everything--in one episode.

I've been wishing that Shonda Rhimes would use the platform of the show to bring awareness to hydrocephalus, which she has.  Derek & Merideth's oldest daughter has hydrocephalus.  I love that they show her, when they do, as being a regular kid.  They don't depict her as being miserable or 'suffering'.

Looking forward to Saturday!

March Meeting

Just a quick reminder that this Saturday is our monthly meeting.  As usual, we will be in the Casey Conference Room at Swedish Hospital's Cherry Hill campus (17th & E. Jefferson, Seattle) from 1-3 pm.  Anyone with an interest in hydrocephalus or brain issues is welcome.  No reservations required.

We will be talking about the Brain Awareness event from earlier this month.  Otherwise the discussion will be open.  We also will be discussing the opportunities to take our presentation to classrooms in the coming months.

Looking forward to seeing everyone!

Happy St. Patrick's Day

UW's Brain Awareness Open House Event: Summary

The 2015 Brain Awareness Event was great!  Every aspect was well worth the effort(s).  It was nice to see that so many of the kids and parents had some knowledge of hydrocephalus, some from personal/family experience, others had read about it.

As always, the kids were gracious and curious about the brain in general and, in most cases, about hydrocephalus specifically.

We used the hydro-doll (a gift from Medtronic) to show the shunt to the kids.  It is always a great icebreaker and conversation starter, with both kids and adults.  We've also had people think that the doll is a REAL child!  That didn't happen at the event though.  I also photo-bombed some group pics with the doll.

Can't believe that the 2016 event will mark the 20th year of the event, as well as our group's participation as an exhibitor.

I'm hoping to be able to post some photos from the event.  It was also covered by one tv station and one of the newspapers.

The Final Countdown To 2015 Brain Awareness Open House!

Can't believe that we are almost there already!  I have the Hydro Doll packed up and ready to go.  Wish I had a stroller and wardrobe for it, but it will work with the scrubs.  Wonder how many people will mistake it for a real baby.

I always want more 'stuff' for the kids to see and take with them.  I'm already planning for 2016.

I do want to thank everyone who will be helping out at the booth this year, in advance.  Your help is so very appreciated.  It will be great to see everyone again.

I just can't believe that this is our 20th year doing this.  Seems like only yesterday we were getting ready for our first one.

Hoping to get photos to post here this year.  Can't wait till I get a good camera and can take some myself to post.

2015 UW Brain Awareness Open House Event--Planning

We're in the final stages of planning our booth/exhibit for the 2015 Brain Awareness Open House event on March 3rd.  Looking forward to seeing over 650 students from Western Washington schools, as well as teachers & parents.

Lots of interesting items for handouts, as well as bringing the Hydrocephalus Doll (a generous gift from Medtronic last year) to its first event!  I've brought it to meetings & to some social gatherings (non-hydrocephalus related), with great feedback.

I'm looking forward to seeing some of our long distance friends at the event, helping out with the exhibit.  It will be great to see them again, since many aren't able to make it to the monthly meetins, unfortunately.

For those who don't know about the UW's Brain Awareness Open House, it is an annual event for school age kids to learn about how the brain functions.  It is always a fascinating event for kids, as well as parents & teachers.  Many learn about new aspects found in brain research.  Our group talks about living with hydrocephalus, the causes & the complexities of the condition.

The next support group meeting will be on February 21st, from 1-3 pm in the Casey Conference Room at Swedish Hospital's Cherry Hill Campus (17th & Jefferson, Seattle).