Thursday, December 20, 2012

December 2012 Meeting

Hard to believe that this was our final meeting for 2012!  As always, we had a great discussion about aspects of living with hydrocephalus, as well as a small holiday celebration.

In the last month I've been doing a bit of research about hydro research and spoke with a very interesting researcher.  It is always great talking to someone about our perspective, of living with the condition.  Then there is the issue of condition vs disease.  The neuro-science folks may use the terms interchangeably, but many of us see a HUGE difference between the two!  It is one of the reasons why I am always saying in my emails about our group that we are there for families, friends, caregivers & those (of all ages) living with the condition of hydrocephalus, because we aren't 'diseased' we are living with a condition & all the complexities that go along with that.

Some of the research being done is great & very interesting.  I am most interested in the possibility of science being able to 'grow' shunt tubing in the lab, using the patient's own cells.  What I'm NOT a fan of is the idea that there is one 'magic pill' that will 'cure' us.  There are simply too many variables with hydro to have one 'cure'.  There is effective treatment that is improving all the time--shunts.  The cause of hydro from a brain bleed is very different from hydro caused by a neural tube defect.  There are also those accidents and injuries during contact sports or car accidents.  The only way to 'cure' those causes is prevention.  Explaining what neural tube defects are & how women of child bearing age can prevent them is the only way to prevent, or lessen the risk of congenital hydro & spina bifida.  Finding ways to lessen, or eliminate, brain bleeds in preemies is another way to prevent the hydro complication.  Gaining a healthy respect for head injury & the potential damage is all about prevention of life altering conditions like hydro.  Along those same lines, we are continuing to see veterans return from being in harm's way far too often with acquired hydro, sometimes undiagnosed.

Not everyone with a shunt has horrible complications either.  While I know many who have had complications, I also know those who have overcome those complications and live very full lives.  It will be 30 yrs ago in January since I had any hydro related surgery!  I know that isn't true for everyone, but it also isn't true for everyone that we have complications every 18 mths or so either.  There are challenges, but it is SO worth overcoming those challenges & living the best life possible, without perpetuating the myth that we are all somehow suffering or living less than productive lives!

I will be posting the article that appeared in Parade magazine several weeks ago, about Normal Pressure Hydrocephalus (NPH).  It has generated calls to us with loved ones asking a lot of questions about how they can make sure that their loved one has the proper diagnosis.  It has surprised others that there is a 5-10% rate of misdiagnosis, with NPH being misdiagnosed as Alzheimers or Parkinsons.  Treated early, with a shunt, outcomes can be quite positive, with less potential brain damage than those left untreated.  Some patients with Alzheimers or Parkinsons have also been found to benefit from a treatment of shunt.

I will also be posting the 2013 meeting schedule shortly.  The schedule is going to remain the same--the third Saturday of each month, at Swedish Hospital's Cherry Hill campus (17th & Jefferson, Seattle), in the Casey conference room from 12:45 to 3:00 pm.  We welcome families, friends, caregivers & those (of all ages) living with hydrocephalus.  Drop ins & kids are welcome to attend.

As always, this time of year, we're looking for volunteers and donations for the Brain Awareness Open House event at the University of Washington.  It is a one day event reaching several hundred students from Western Washington state, parents & teachers.  It is a great outreach project for us.  It is part of the Brain Awareness Week program.  Hopefully, we will have a lot of 'stuff', in addition to our informational material and members to talk about living with the condition, as we did last year.

Fortunately, 2012 has been good to our members.  We haven't had problems with our hydro this year & hopefully, 2013 will be the same!

Happy holidays!  Happy New Year!


Wednesday, December 12, 2012

Correction For December Meeting

So sorry about giving the wrong date for the December, 2012 meeting.  We WILL be meeting this Saturday (not Monday) from 12:45 pm to 3:00 pm in the Casey Room at Swedish Hospital's Cherry Hill Campus.  Look forward to seeing everyone this Saturday!

Sunday, October 21, 2012

October 2012 Meeting

The October, 2012 meeting took place on Saturday, the 20th.  We talked about an array of topics, including  current articles and information about hydrocephalus.  One of the topics was the further study of scientists growing a shunt from someone's own cells.  It would solve some of the problems/issues around shunts.  Several of us at the meeting have had old shunts that allowed our own tissues to build around it, so that when they were removed, there was a 'natural' path for the fluid to be directed to.

I also commented on an article I found online, from the Dorango (sp) Herald about hydrocephalus that gave quite a bit of misinformation.  My pet peeve is calling a condition a disease and continuing to perpetuate myths about what it is to live with a condition, like hydrocephalus.

Research is great, but there isn't one single cause of hydrocephalus, so there is never going to be a magic 'cure' for it.  Congenital hydrocephalus has to do with folic acid levels and there is a form that has a genetic component to it.  Post birth brain bleeds can be caused by any number of things--including head trauma and simply being a preemie.  The 'cure' for that would be to study how to prevent brain bleeds in newborns.

Accident involving head trauma/injury is another.  Avoiding accidents is the 'cure' for acquiring hydrocephalus through brain injury.  We are seeing quite a few veterans coming back home with TBIs (Traumatic Brain Injury) and some have been misdiagnosed, or not diagnosed at all, so that preventable damage isn't addressed.  The 'cure' is to find ways to avoid even the most minor brain trauma injuries during wartime and taking those TBIs, particularly closed head injuries, more seriously when initial treatment can prevent some damage.

It isn't just about TBIs from war zones or some dramatic accident.  More research is finding that head injuries, particularly concussions, are a problem for kids, teens and young adults playing a variety of games--like football and soccer.

Normal Pressure Hydrocephalus (NPH) needs to be taken more seriously with older adults, rather than misdiagnosing it as Alzheimers or Parkinsons.  Both are all too often the misdiagnosis when prompt treatment would allow someone with NPH to live a more 'normal'/familiar life.

We also had some great laughs--a lot of 'hydro humor' we are known for!

Hope to see everyone at the November 17th meeting.  As always, we will be at Providence Cherry Hill Campus (17th & Jefferson) in the Casey Room from 12:45 pm to 3:00 pm.  Drop ins are welcome.  We offer moral support, information and education to families, friends, caregivers and those (of all ages) living with the condition of hydrocephalus.

Happy Holidays!!


Sunday, September 16, 2012


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

Saturday, September 1, 2012

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.

Saturday, August 18, 2012


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!

Thursday, August 16, 2012

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!

Sunday, July 22, 2012

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! 

Thursday, July 19, 2012

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. 

Thursday, June 21, 2012

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.

Saturday, June 16, 2012


As always, it was great seeing our group again.  Time went by so fast.

Among other things, we discussed the upcoming Hydrocephalus Awareness Month in September and ways we can bring awareness to the condition & to the group.  We had a promising lead with a local radio personality who expressed support for the group & our mission.  However, that seems to have fallen through.  Hopefully things will change before Sept.  It would be great to do one or two radio interviews, talking about various aspects of hydrocephalus.

I got an email from an unknown person, who was asking about shunts.  In general, there are SO many of them and so much research going on at any given time that it is impossible to tell what type of shunt or even if it is specifically for hydro.

I'm looking forward to the next meeting, on July 21st, from 12:45 to 3:00 pm.  As always, we welcome drop ins & kids, as well as families, friends, caregivers & those of us living with the condition.  The Casey Room at Swedish Cherry Hill Campus has been a great meeting room for us.  It is located inside the dining room, just down the hall from Starbucks!

Sunday, May 27, 2012

Brain Injury--Adults

We've been seeing and hearing quite a bit in the local Seattle press lately about adults with head injuries.  Specifically, James Foster, a young man from Puyallup who was beaten after complimenting a man on his car.  The brain damage is apparently permanent, although no reports specifically say anything one way or the other about hydrocephalus.  We would like to extend our moral support to the Foster family and let them know that if they would like to come to our meeting (June 16th is our next meeting, from 12:45 pm to 3:00 pm at Swedish Hospital's Cherry Hill Campus, 17th & Jefferson, in the Casey Room), they are more than welcome.

We've also been hearing the latest in the story of Christopher Harris, who was slammed against a wall a couple of years ago, by a Sheriff's deputy.  Like Mr. Foster, Mr. Harris' life was forever changed because of his head injury.  Not only were these men's lives changed, so were those of their families and friends.  These were preventable injuries, recieved through no fault of their own, except being someone else's victim.

These are just two cases getting attention right now.  Again, families, friends & caregivers are welcome to attend our meetings, although we do specifically talk about living with hydrocephalus.

Monday, May 21, 2012

May 2012 Meeting

The May meeting was very informative and we had a lot of fun--as usual.  We discussed the Charlie Rose Brain series.  I really want to buy it!

We also had a great conference call with one of our members on the east coast.  It was great talking with her.

We have also been discussing doing some additional outreach to caregivers, particularly parents--both those with lots of experience dealing with hydrocephalus, as well as other brain issues.  Recently, a young man in Puyallup, Washington received a TBI after being assaulted.  He is now in rehab, but has had life altering brain trauma.  I haven't heard if hydro is part of his TBI or not.

As always, I'm looking for more 'stuff' to include in the 2013 Brain Awareness Open House exhibit.

Unfortunately, we didn't get to meet a couple of new folks as we had hoped this month.  Maybe at the June meeting.

Can't believe that we are almost to June already!

Friday, March 9, 2012


Again, I would like to thank everyone who helped out this year at our table.  Medtronic's assistance was invalueable.  Very much appreciated.  We reached over 600 kids, parents & educators at this year's event.  The reusable bags, caps, squishy brains, etc. were all very popular, as always.

I would also like to thank Dr. Eric Chudler for his tireless efforts he puts forth every year, for the last 15 yrs, to put on an excellent event that engages the interest of kids, parents & teachers.  BAW provides groups, like ours, with a great forum to reach out to folks who may not have any experience or knowledge of hydrocephalus.  Thanks again.

I would also like to thank MOHAI for their generosity & support with providing BAW with a venue to put on such an event.

I am hoping to post some photographs from this year's event soon.

Looking forward to next year's event!!  It will be #16 for us.  Wow, it doesn't seem that long.

Tuesday, March 6, 2012

Brain Awareness 2012--March 8, 2012

Can't believe that we are less than 24 hours from this year's BAW event!!  Looks like we will have lots of people at our booth to speak with the estimated 600+ kids we'll be seeing.  Looking forward to this year's event.

We are going to be having at least two door prizes to give away this year.  Two books by Sherman Alexie.  A third book, a memory strengthening book of questions, is also available for a door prize, but not sure we'll include it.

As a group, we love doing the BAW event every year.  Personally, I love the whole process of coming up with ideas for our booth every year & pulling it all together, with the help of our members.  Last year we had a rep from Medtronic (the shunt manufacturer) that went over quite well with the kids, parents & teachers.  We will be having them at our booth again this year, hopefully with the same results.

This will be our second year having BAW at the Museum of History & Industry (MOHAI), located in the Montlake area of Seattle.  It is a wonderful location, right next to Lake Washington.

I want to thank, in advance, our members & others who are coming to help at our booth who are coming from outside of the Seattle area.  It is always great to see you at this event & at our monthly meetings.

Hopefully, I'll be able to post some photos from the event.

Wednesday, February 22, 2012

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!

Thursday, January 19, 2012

January 21st Meeting Announcement


Due to the weather situation in Western Washington, the group has decided to cancel the January meeting.  Hope everyone is safe during the bad weather!

An additional note: TPTB at Swedish now close the cafeteria at 1pm (or 1:30 pm, depending on the source), on weekends, so in order to make any purchases or get tea, coffee or water, you must get it before closing time.

See everyone on February 18.


Brain Awareness Open House (BAW) will be held on March 7th from 9:30 am til 1:30 pm at MOHAI.  We will have a couple of reps from Medrtonic at the event.  Medtronic has ordered several hundred reusable bags for us to hand out.  Thanks, Leanne!  We are very grateful for all their help both last year & at this year's event.

I just got a 'new' digital camera.  Hopefully I'll be able to bring it & post some pictures from this year's event!

I'm still looking for some door prize items to give away at the event.  I'd love to have a couple of things, to spread it out over the four hours.

Stay safe!