Saturday, December 13, 2014

December Meeting

Looking forward to the December meeting on the 20th.  As usual, we will be meeting from 12:45 pm to 3:00 pm in the Casey Conference Room at Swedish Hospital's Cherry Hill campus (17th & Jefferson, Seattle).  Drop ins & kids are welcome.

Starting in January, our meeting time will be from 1:00 pm to 3:00 pm on the third Saturday of each month, in the same conference room. 

Friday, November 28, 2014


Hope everyone had a wonderful Thanksgiving.  We did, despite having the oven die on us even before getting started!  Had to run out and buy a new countertop oven.  Everything turned out fine in the end.

I love this time of year!  Christmas is next.

Hope everyone has a wonderful holiday season and a happy 2015.

Saturday, November 22, 2014

Happy Thanksgiving!!

Hope that everyone has a Happy Thanksgiving on Thursday.  I'm always thankful to be alive & well.

We got the official notice/invitation to participate in the UW's Brain Awareness Open House for 2015.  It will be held on March 3rd.  I'll be filling out the form shortly.  Looking forward to participating again.

I've already posted the meeting schedule for 2015.

We look forward to seeing everyone at the next meeting, on December 20th, from 12:45 pm to 3:00 pm in the Casey Conference Room.  Hard to believe that it is almost the end of 2014!!

Sunday, November 2, 2014

2015 Meeting Schedule

In 2015 we will be meeting, as usual, on the third Saturday of each month, in the Casey Conference Room located in the cafeteria/dining area of Swedish Hospital's Cherry Hill campus (17th & Jefferson, Seattle).  We will be meeting from 1:00 pm to 3:00 pm.

As always, we welcome families, friends, caregivers and those (of all ages) living with the condition of hydrocephalus.  Drop ins & kids are welcome to attend.

The 2015 meeting dates are:

January 17th
February 21st
March 21st
April 18th
May 16th
June 20th
July 18th
August 15th
September 19th
October 17th
November 21st
December 19th (Happy Birthday Kim!)

Our November meeting for 2014 will be November 15th from 12:45 pm to 3:00 pm.

Monday, October 27, 2014


The October meeting was small, although we did have a conference call during the meeting with a member who wasn't able to attend in person.  Overall the meeting was a good one.  Caught up on everyone's life since the September meeting.  Everyone is doing well.

I will be posting the 2015 meeting schedule shortly.  Thanks to Jennifer, at Swedish (Cherry Hill campus), we have our schedule already!

Again, a deeply felt thanks to the Great Wheel for showing their support of September's National Hydrocephalus Awareness Month by lighting up the wheel on September 29th.  As well as mentioning both the Hydrocephalus Support Group, Inc. & The Hydrocephalus Association on their Facebook page.

I had thought about bringing the Hydrocephalus Doll with me to this month's meeting, but decided not to.  May bring it to November's meeting.

Tuesday, October 14, 2014

October Meeting!

Hi!  Can't believe that we are already coming up on the October, 2014 meeting already.  We will be meeting on October 18th, as always, we will be meeting from 12:45 pm to 3:00 pm in the Casey Conference Room at Swedish's Cherry Hill campus (17th & Jefferson, Seattle).  We welcome anyone with an interest in hydrocephalus.  Drop ins are encouraged.  Kids are welcome.

Looking forward to seeing familiar & new faces.  I will be bringing the hydrocephalus doll.

Tuesday, September 30, 2014


The Hydrocephalus Support Group, Inc. would like to thank the Great Wheel, Seattle, for lighting up the ferris wheel for National Hydrocephalus Awareness Month.  We truly appreciate the effort & assistance in bringing public awareness to this issue.  We encourage viewers of our blog to visit The Great Wheel Seattle's Facebook page.

Monday, September 29, 2014

PBS: Frontline Rerunning 'A League of Denial'

Just heard that Frontline is going to be rerunning the documentary about CTE, 'A League Of Denial'.  It is an excellent piece about the growing body of information about CTE, resulting in large part from concussions during contact sports--like football.  Definitely worth seeing.  Every parent with a child even considering contact sports, at any age, should watch this piece at least once.

Unfortunately, they don't mention other issues, like acquiring hydrocephalus & what that means over the lifetime of someone who has acquired it.  As we always say, every case is unique, but life without it doesn't have nearly the challenges over a lifetime.

This documentary can really open up a vital discussion about head injury in general & how it relates to contact sports specifically.  They also discuss the false sense of security provided by helments & touch on the risks for those who DON'T use helmets--like cheerleaders & soccer players.  Sad to say, one of the shortcomings is that they do talk about the 'right way' to head a ball, which is also simply wrong.  It was long ago proven that heading a ball, especially without a helmet, DOES cause frontal lobe damage.

Sunday, September 28, 2014

The Close of National Hydrocephalus Awareness Month

September is coming to a close; 2014's National Hydrocephalus Awareness Month as well.  While we are looking forward to planning the 2015 Awareness Month, we still have a few days left in this year's.  Looks like the Seattle waterfront's Great Wheel will be lighting up for us!  Really looking forward to it.

The Great Wheel will have a picture on their Facebook page.  I'm hoping to be able to post a picture here as well.  I also sent a press release out to the tv stations to let them know.  Hoping that they pick up on it.

Next year we will have a bit more time to plan & get set schedules.  I'm also looking forward to next March's UW Brain Awareness Open House, again.  That is, right now, our biggest event every year.

LinkedIn is proving to be a great resource!

Thursday, September 11, 2014


Sorry I haven't posted for awhile.  Medical stuff going on & lots of conflicting opinions on what to do.  Went to see my neurosurgeon and GP resident disagrees with his findings.  So I'm caught in the middle.  Complicated story that could/should have been so much simpler!

Looking forward to this month's meeting on the 20th.  Hoping to see new & curious faces at this one & in the coming months.  Got started on social media this month & made lots of connections.  I've made our desire to build on our membership known, so hoping that we see some interested folks coming to the meetings, as well as those with their own hydrocephalus experiences to share.

As always, we will be meeting in the Casey Conference Room at Swedish Hospital's Cherry Hill campus from 12:45 pm to 3:00 pm.  The campus is located at 17th & Jefferson on First Hill in Seattle.  We welcome drop ins and kids.  Our focus is on living the best life possible with hydrocephalus.

I haven't yet got confirmation of the date & time of our publicity effort for the month.  I said that it would be great if it would happen the week of the meeting.  When I have confirmation everyone will be hearing about it!

Sunday, August 10, 2014


Hard to believe that the August meeting is coming up next Saturday, the 16th.  As always, we will be meeting in the Casey Conference Room at Swedish Hospital's Cherry Hill campus from 12:45 pm to 3:00 pm.  Anyone with an interest in hydrocephalus is welcome to drop by.

Also, hard to believe that next month is already National Hydrocephalus Awareness Month!  Still hoping to get some awareness projects done throughout the month.  But I have some medical 'stuff'--some hydrocephalus related--that I need to deal with.  I'm always hoping, every year, that awareness month gets more attention than it does.

This is also my birthday month!  How quickly they seem to come now, like it or not.

Wednesday, July 23, 2014

July Meeting Update

We discussed ways to increase awareness of the group, our mission and hydrocephalus in general.  There are some tentative plans in the works for National Hydrocephalus Awareness Month in September, which is fast approaching.

We also have discussed more plans for the more distant future, including the 2015 September awareness month possibilities.

There is a possibility that we could do a Crowd Funding campaign to raise funds for an awareness campaign as well.  Specifics aren't firmed up, but a September campaign would be great--this year or next.

Lots of potential.

Tuesday, July 15, 2014


The July meeting is on July 19th, from 12:45 pm to 3:00 pm in the Casey Conference Room at Swedish Hospital's Cherry Hill campus (17th & Jefferson, Seattle).  As always, everyone with an interest in hydrocephalus is welcome to attend.

We do have a few things on the agenda.  I've been working on some promotional/marketing ideas for September--a few look like they are going to happen!  Very excited.

Monday, July 7, 2014

September: National Hydrocephalus Awareness Month

I'm looking at several options for September, to help raise awareness of hydrocephalus in Washington state.  September is going to be here before we know it!  Many of the ideas I've had would need to be planned out further in advance.  Maybe for 2015!

Ideally, I would love to have an event a week during the month for raising awareness.  I've contacted some people who are interested in including their businesses in this.  One thing I would like to do is a dinner or brunch type of event.  I'm looking for more ideas.

I've had a PSA idea in my head for awhile too.  It would be great to see that happen.

It IS Seafair time right now.  Someday I would like to see us have a place in the festivities.

While I know that many want to focus on raising funds for 'The Cure', our focus is on awareness of the many aspects of hydrocephalus and living the best lives possible with the condition.  There is still SO much to be done in this area.  There are aspects of research that are very compelling and we want to get the word out about those findings as well, we are simply not focused on funding research.

Saturday, July 5, 2014

Here We Go Again!

Let me begin by saying that I appreciate the dangers and challenges of the job(s) of first responders.  I understand that they are in a high stress job with lots of variables and that every situation presented to them has challenges, but that IS the job.

Just saw the video of the CHP officer using a citizen's head as a punching bag.  This seems to be the go-to place for officers to target, with little or no regard for the potential damage they can inflict.  Most probably don't even KNOW that they can be inflicting trauma to the brain that can cause many injuries, hydrocephalus being one of the many.  The victim isn't always capable of self-diagnosis in these situations.  Someone with no history of hydrocephalus wouldn't have the words to convey to a doctor anyway.

Apparently, this particular victim WAS taken to hospital and evaluated, medically and mentally.  I know of a couple local incidents where that wasn't the case.  In one instance the same officers who did the kicking about the head also thought he could "walk it off" and let him go home after declining medical assistance.  The police department rep I spoke with was obviously shocked when I told him that the victim could have had a brain bleed and been unaware of it, which could have led to brain damage or death.  He could have gone home, crawled into bed and never awoke the next morning.

I don't particularly care why the officer felt that this was necessary.  The point is, the risk is there and it is too great to justify in ANY situation I've seen documented.  The potential damage isn't the same as a bruised ego or a sprained ankle.

I also realize that most people aren't aware that hydrocephalus can be acquired at any age.  It isn't 'just' a birth defect.  It can be caused by any assault on the brain--intentional or not.  It can be caused by accident, brain tumor, concussive event(s), a brain bleed or anything that alters the production or flow of the cerebral spinal fluid surrounding the brain and spinal cord.  Slamming someone's head into sidewalks, highways or a building's exterior wall all put someone else's life at risk, somehow I don't see that as being justified in any of the situations I've seen documented. None.

Wednesday, July 2, 2014


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). 

Sunday, June 22, 2014


First, what a chore to get to the meeting!  Several major roads were closed, causing HUGE traffic tie-ups.  Combine that with the Rock N Roll Marathon/Half Marathon and construction projects--it was one HUGE mess!  I was originally concerned about finding a new route from the train station to the hospital, but that turned out to be minor!  My trip was nothing compared to a member (I was going to pick up at the train station), who ended up having to take the bus.  That trip took over 90 minutes!  It usually takes less than ten to go from the train to the hospital.

I did, inadvertently, find the new way to the hospital from Pioneer Square, which takes less than five minutes!  We went back that way, when I dropped her off at the train for the return trip.  It was still a mess at the Pike Place Market & the heart of downtown, but finally got home.

The meeting itself was great, as usual.  We had the regulars and a conference call with a member from the east coast.  Always love having those conference calls and including folks who otherwise wouldn't be able to attend.

We discussed progressive issues we each have, some hydrocephalus related, some not.  Part of it just comes with age, unfortunately.  At least SOMETHING is normal about us! :)  One of us is having physical therapy and another has just finished his sessions of occupational therapy.  I will only speak to mine right now.  My shoulder feels better than it has in years.  I have soft tissue damage from a car accident a few years ago that is finally getting dealt with now that I have health insurance that covers such things.  This does tie in with my hydrocephalus, since my old shunt scar/pathway has been a literal pain for the last 31 years, ever since the shunt tubing was removed in 1983.  In addition to the shoulder issue, this will also be able to be examined thoroughly.

Next on my medical agenda (other than losing more weight) is to get back to having a neuro team and really digging deep into my hydrocephalus.  I want to do some serious examination and research into my case.  As we always remind each other, every case is unique.

I've been diagnosed with scoleosis, which I guess I always had.  I've been told that as long as I remain active and mobile it shouldn't be more of a problem than it has been for the last 50+ years.  I was never told about scoleosis, ever, until about a year ago.  All these little boxes of surprises...

Back to the meeting, we discussed history of hydrocephalus treatment a bit more.  One member reminded us that his first neurosurgeon was very involved in early lobotomies, which shocked him.  Looking back at how hydrocephalus was treated before the 1950's and looking at today's treatments, it makes us even more grateful for what we have in our lives now.  It also drives home the concept of making lemonade out of lemons.  We have very full, rewarding lives!  Frankly, we all agreed that we appreciate what we have in a very special way.

It also brings up the whole concept of a one-size-fits-all 'cure' that so many new parents, new to hydrocephalus, seem to be fixated on.  They seem to think that their children's lives will be forever horrible and without joy, success or fulfillment.  Nothing could be further from the truth!  Shame on the medical professionals who assume that because they detect hydrocephalus that a fetus' life is over before it has begun.  There is no way of knowing what that child will achieve.  Assuming can deprive everyone of the benefits that every life has to offer.  We are much more than our brain scans.

A few years ago a couple, new to the hydrocephalus experience, proceeded to tell me what my life was like and what I could/couldn't do in life.  The husband even said "I don't get you people, you are so against research."  We aren't against research into hydrocephalus, we tend to be against this idea that we need to be 'fixed' and that our lives are horrible without their 'cure'.  Hydrocephalus is treatable, manageable and liveable.  This couple routinely presumes to make these grand pronouncements about what hydrocephalus is like, when it isn't anything like what they are saying!  The majority of us 'dinosauers' had parents who refused to have us being defined as cripples or a homogenous group.  Hydrocephalus isn't WHO we are, but it is a part of us.

As far as a 'cure', the only real universal 'cure' is prevention.  Even then, it isn't going to ever be completely eliminated.  Instead of looking for the hydrocephalus 'cure', they need to look at preemies, brain bleeds, preventing accidents (particularly with teens and young adults), find answers to international concerns rather than sending healthy men and women into war zones where they can be damaged in so many ways--including TBIs/brain injury.

We talked about the fact that some parents get their kids involved in contact sports at a very early age, when their necks and brain aren't close to being mature enough to handle the blows.  Even adult brains can't handle everything that contact sports throws at them.  Concussions need to be taken more seriously.  It is getting better, but awareness and appreciation of them have a long way to go.  Heading balls in soccer, for example, is not good, it still damages the brain, even if they hit the sweet spot.  There is nothing funny or lighthearted about being beaned in baseball either.  We still have coaches and parents who's theory is 'walk it off', 'shake it off' and 'don't be a wuss'.  It isn't being a wuss to take the brain and potential damage of it seriously.

Research into causes and prevention of acquired hydrocephalus, as well as congenital hydrocephalus is important.  But it isn't as glamorous or 'sexy' as talking about a 'cure' and 'the evils of the shunt'.  I'm grateful for the shunt and where management of my condition has come.  There are even procedures that can be done before birth with some congenital cases.

We want to also get more involvement in the community with the group.  Awareness is great, but we want to reach more families and adults living with the condition.

Tuesday, June 17, 2014


Hard to believe that we are at the halfway point of 2014!  This Saturday will be the June meeting.  As always, we will be meeting in the Casey Conference Room from 12:45 pm to 3:00 pm.  Anyone with an interest in hydrocephalus is welcome to attend.  Drop ins and kids are welcome.

We serve families, friends, caregivers and those (of all ages) living with the condition of hydrocephalus.  Hydrocephalus can impact anyone, at any age--be it through accident, a congenital situation or spontaneously (Normal Pressure Hydrocephalus--NPH).  Unfortunately, the latter is often misdiagnosed as Alzheimer's, Parkinson's or some other form of dimentia before being diagnosed as NPH.  NPH is very treatable and manageable, especially if found early.

I'm sure that we will discuss the stresses on family & friends that are caregivers, given the loss of Casey Kasem and the high profile situation surrounding his final months.  While we don't often talk about elder abuse, or abuse of the disabled in general, that may also be a point of discussion.  Many of our members are very functional and don't require constant care, but we've all known folks with hydrocephalus who required constant care for some period of time.  It can take a toll on ANY caregiver, especially family and friends.  Respite care and sharing the responsibility can be difficult for some families.

Those of us who are highly functioning now, always have it in the back of our minds that we may be the ones needing constant care.  Spouses have a tendency to lose themselves in caregiving, taking on a very different role than spouse.

Most families will look at the Kasem's situation and think that could never happen to them, but it is all too common.  Most families don't garner the kind of publicity/media attention that Mr. Kasem or his family did.

As always, we look forward to seeing familiar faces, as well as new ones at the meeting.

Tuesday, June 3, 2014


Here we go again.  The interim-police chief of Seattle Police, Harry Bailey, has reversed the discipline of an officer who stomped a handcuffed suspect on the curb of a public Seattle street.  Almost three years later, the officer is now claiming that he had a concussion at the time, from a drunken brawl inside the bar where he accused the suspect of stealing his coat.  When he faced the music the first time around, none of this concussion blaming was going on.  There was no evidence (brain scan) showing that he was injured that night.  Even if he was, I don't buy that he had any excuse to stomp on a man's head when he was on the ground, handcuffed.

I have a difficult time with seeing/hearing about people being beaten about the head or stomped, in any situation, but particularly something like this where a first responder who should know better and be held to a higher standard isn't.  This officer could SO easily have caused a case of acquired hydrocephalus, or worse.

There was another case a few years ago, where a suspect was beaten about the head by a detective (in both incidents there were other officers on the scene at the time of these incidents) who also threw around a lot of offensive language.  The language was bad, but kicking him about the head and then, after realizing he wasn't guilty of anything (it was a mistaken identity situation), the same detective told the guy to "walk it off" when he couldn't stand or walk unassisted.  He wasn't drunk, the victim was suffering from being kicked in the head numerous times!  The victim was also allowed to refuse medical attention.  I've spoken to police since then and they were unaware that the victim could have had an undetectable brain bleed/injury and could have gone home and never woken up.  Honestly, they were shocked that the person wouldn't know they had a brain bleed or injury to their brain.  I have the language to express what is often going on with my brain, but someone who hasn't lived with brain issues won't have that ability, but not being seen by medical professionals could shut the door, without first responders knowing it.

I know that a lot of us with hydrocephalus, congenital or acquired, live with a certain sense of isolation and feeling that our condition is so rare that there aren't any who would understand.  Acquiring a condition through accident is one thing, but having it potentially inflicted by people who should know better is just so much more offensive, IMO.

Tuesday, May 20, 2014

Dr. Ben Carson's Appearance On The View

While it was interesting to see Dr. Ben Carson (retired neurosurgeon) on The View this morning, it would have been nice if they had provided more time for him to talk about health care, in general.  He is certainly more conservative than I am, but he was one of the best neurosurgeons in the country for many years.  I'd rather hear HIS take on health care than some celebrity.

Rather than seeing him as President, I would like to see him as Surgeon General!  Not that he couldn't be a very successful President.  I'd rather see his expertise being put to use in ways that would benefit the country in ways that the role of President isn't able to.  I'd like to see him address brain injury in veterans, brain injury in general and issues that get pushed aside in favor of those that have a 'sexier' appeal to spin doctors in Washington.

I do disagree when it comes to having a health care savings account, rather than a single payer plan.  That would keep a lot of people away from health care, since most of us can't afford to save for our futures as it is.  Those with the means to set aside the kind of money it takes to cover the unexpected health care crisis in life always seem to 'forget' about those who have to choose between rent and food.  It isn't a pretty concept, but a necessary one.  Many people put off basic health care because of the cost.

There are lots of people who can't work, or who are the working poor.  For them meds are a luxury, even if their lives depend on it.  The estimate here, in Seattle, is that someone has to make at least $50,000/year to live comfortably.  Most people I know, even those working forty hours a week, or more, don't bring home that much.  Rent here for under $1,000/mth is difficult to come by.  That doesn't include food, utilities, phone and other elements of life that many of us have to consider luxuries, including health coverage.  We are looking at a crisis with public transit in the county right now.  Cutting service, with little or no regard for those who don't have the luxury of choosing between riding the bus or driving their car leaves many stranded.  Even for those on the reduced fare program(s), riding just to and from work can cost a person on the reduced fare program over $500/yr!  Less than maintaining a car, but nevertheless, it can be a hardship on a fixed or low income.  It is also not the most reliable of transportation, for some jobs if you are late three times, even by five or ten minutes, it can cost you your job.

I rode the bus for over thirty years and saw, or knew, people with disabilities who had no option.  They weren't able to drive, it wasn't about a choice for them.  I've said for years that the decision makers drive and make enough to park in expensive parking lots.  They are out of touch with the most vulnerable users of public services.

So on many levels I disagree with Dr. Carson.  However, that isn't everything.  I'll always have a soft spot for most people who have, at some time or another, worked in the field of neurology, neuroscience and neurosurgery.  

Monday, May 19, 2014

May 2014 Meeting Summary

This month's meeting was interesting.  We discussed hydrocephalus history and plans to do more research on various aspects of the subject.  The topic brought up the issue of the 'cure' that so many newer parents seem to have an obsession of.  I've brought this up before, along with my views, which are often shared by others with the condition.  It isn't that we are against research into hydrocephalus, just that the idea that we all need to be 'fixed' or that we are all 'suffering' and need some one-size-fits-all approach to ending the condition isn't where we feel all energies need to be trained on.

To see where hydrocephalus, and its treatment, have been and where we are today, it is why we are grateful for the strides that have been made.  I recall one of my neurologists saying that if the math portion of my brain hadn't been damaged by the hydrocephalus, I would have made a good doctor.  However, if I didn't have hydrocephalus, then I wouldn't have the hyper-awareness of my brain, or my interest in how the brain works!  I also wouldn't have any interest in the possible genetic aspect of my hydrocephalus.  As I've said before, if I didn't have this condition (it isn't a disease) I would think of my brain the way most people think of their big toe.  I wouldn't think of it, unless I injured it or had on a tight fitting pair of shoes.

I also remember being told, by a new parent to the hydrocephalus experience, that he couldn't understand why "you people get so upset about research".  Actually, he also said that I was against research and implied (many times) that we adults with hydrocephalus are incapable of understanding the complex issues around the condition.  As though those of us, adults, who have had a lifetime of experience in dealing with various aspects of the condition don't know what we are talking about!!  Then again, he and his wife said that they didn't need to hear from parents with over fifty years of experience of having 'kids' with hydrocephalus.

Exploring various aspects of hydrocephalus history is going to be interesting.  I'm looking forward to it.

Another subject, which I want to bring up at next month's meeting, is this discussion of Ms. Clinton's head injury several months ago and Karl Rove's opinions about it.  He seems to conveniently forget that Ronald Reagan had a head injury after falling from a horse.  He also was in the early stages of Alzheimer's when in office.  No one said 'boo' about that then.  He wasn't saying that the President had no business being in office.  Sorry, to those who don't believe that President Reagan didn't have Alzheimer's until after he left the White House, but the medical profession has stated in more than one source, that people with Alzheimer's have the disease for a decade or more prior to definitive diagnosis.  That would have put President Reagan smack in the middle of his time in office.  There are those who also question whether the fall from the horse and subsequent head injury didn't leave him with possible hydrocephalus, not as a result of the Alzheimer's, but because of the fall.

The idea that because someone has had a head injury that they are suddenly incapable of decision making is not based on fact.  People go on after head injury to have full lives, with the ability to make decisions remaining in tact.  In fact, most people with head injuries go on to drive, raise families and enjoy their lives without having their mental health or abilities being in question.

Friday, May 16, 2014

An Apology

My Apology For Spelling Error

My apology for the spelling error in the previous post.  I misspelled anencephaly.

Changing subjects a bit, I have been contacted with a question about support groups (specifically in eastern Washington state) for parents of anencephaly babies.  We couldn't find anything in our searches.  Anyone knowing of an existing group, or interested in starting one can contact us.

Wednesday, May 14, 2014



Last night KOMO 4, Western Washington state's ABC affiliate, had a very compelling story about the cluster of anancephaly cases occurring in eastern Washington state.  It seems that three counties in that part of the state are having an unusual number of cases, four times the national average, of late.

While our group's focus is on hydrocephalus, anancephaly is also a neural tube defect that prevents the full development of the brain.  In most cases these kids live for a matter of hours, there have been some who have lived longer, but they lack the brain development to live very long or develop into fully functioning children.  So even though this isn't directly related to hydrocephalus, it is still an interest for some of us as a brain issue.

Jeff Burnside, the reporter at KOMO4, did a good job of describing the situation.  I had seen another story about this subject on The Doctors awhile back.  Everyone impacted by this story is wondering why this is happening with such frequency in this particular area.  As with congenital hydrocephalus, anancephaly is a neural tube defect where the mother's folic acid levels are of critical importance.  Yet, is the cause of this cluster partially (or wholly) related to pollution, contamination, pesticide exposure, exposure to unknown elements from the Hanford site?  Other news reporters have been investigating illnesses and unreported dangers to workers at the Hanford site cleanup, just as Hanford did during government testing over 60 years ago.  There are lots of unanswered questions and concerns about how all this could (or might not) be related to what is happening today to the unborn.

It is going to be interesting to see how this plays out over the next months, years and decades.  The CDC is looking at this cluster with interest, apparently.

Monday, May 12, 2014

MAY Meeting Reminder

Just a quick reminder that the May meeting is coming up on the 17th.  As usual, we will be meeting in the Casey Conference Room at Swedish Hospital, Cherry Hill Campus (17th & Jefferson) in Seattle from 12:45 pm to 3:00pm.  Anyone wanting to share their hydrocephalus experience or wanting information about living with the condition is welcome to attend.  Drop ins are welcome.

Our group focuses on overcoming the odds and living the best life possible with the condition of hydrocephalus.  We offer moral support and information to families, friends, caregivers & those living with the condition, at any age.  Our core members have a cumulative 100+ years of experience living with the condition, which includes overcoming a lot of negative assumptions and stereotypes about living with hydrocephalus.  Sadly, there are still those who believe that we are incapable of having productive, fulfilling lives because of hydrocephalus, which short-changes everyone.

I brought the hydrocephalus doll to last month's meeting.  It is going to be a great teaching tool/visual aid.  I've already found that it has broken the ice with a lot of people, opening up a dialog that is welcome.  I'd much rather answer questions about it than live in silence.  I also like to encourage anyone wanting more information about the condition to attend our monthly meeting, or email us through the blog.

I'm already looking at the possibilities of showcasing the subject in September, for Hydrocephalus Awareness Month.  Part of that awareness needs to be that this condition is more than 'just a birth defect' it can, and does, happen at any age.  It can happen because of a brain injury or as a result of a tumor and even the spontaneous form--Normal Pressure Hydrocephalus (NPH), which most often occurs in older folks.  NPH can present to doctors with many of the same symptoms as Alzheimer's or Parkinson's, which is why it is estimated that it is misdiagnosed in 5-15% of cases.  Diagnosed early, treatment and management of NPH is very effective & can limit the damage done.  Untreated, the pressure builds and it can be fatal.

As Doctor Richard Ellenbogen (Seattle Children's Hospital; UW Medical Center/Harborview) has said in interviews, a child or young adult has a greater chance of acquiring a brain injury (including hydrocephalus) from a fall from a bicycle than on the football or soccer field.  However, that doesn't mean that concussions and brain injuries from sports shouldn't be taken seriously--far from it!

One of my areas of interest is in the training of first responders, who should know the signs and symptoms.  They should also be aware of the damage that can be done to the brain by using the head as a punching bag.
I just had my first appt. with a doc on my new insurance plan.  Wish I was able to keep my naturopath, but that wasn't an option.  However, I'm really hoping to get a real team in place, one that includes a neurologist and neurosurgeon.  I would also like to do as much research as possible into my own hydrocephalus.  I find it facinating, how the brain works and how my hydrocephalus impacts my life.  There are so many unanswered questions!  Some of them don't have answers--yet.

I'm also glad that I'm with the teaching clinic so Residents are exposed to hydrocephalus in the real world, rather than just from textbooks.  We are each unique, no case is exactly like another.  My congenital case isn't the same as someone who had a brain bleed (as a preemie or an adult).  My case is also not exactly the same as someone else with congenital hydrocephalus either.

We look forward to seeing everyone at May's meeting!

Take care.

Tuesday, April 29, 2014

Smithsonian Article: Turbo-Charging Your Brain

The May, 2014 issue of Smithsonian magazine has a very interesting article, 'Turbo-Charging Your Brain' or 'Mindcraft' by David Noonan is very interesting.  The article talks about the colaborative work of neurosurgeon Kelly Foote and neurologist Dr. Michael Okun in furthering the development, and use, of deep brain stimulation (DBS) to solve or improve many movement disorders.  DBS can also be used to help with tremors associated with Parkinson's.

Everything about the brain interests me, but especially some of the movement disorders, some of which have a connection to hydrocephalus.  Specifically Normal Pressure Hydrocephalus (NPH), which is all too often misdiagnosed as Parkinson's, Alzheimer's or other conditions that involve dimensia and/or gait issues.  A shuffling gait and a downcast gaze are also signs of NPH.  Found early, treatment can be very effective in a patient maintaining a good quality of life.  However, early treatment is vital to meeting that goal.  NPH gets very little discussion in the mainstream media.  Just as hydrocephalus in general does.

While many in the hydrocephalus community look down on neurologists, I find it promising to see a neurosurgeon (Foote) and neurologist (Okun) working TOGETHER to find answers about what DBS can do to improve the lives of their patients.  It was Okun talking in the article about a movement issue with a "shuffling gait" that caught my eye, since that is one of the key signs of NPH.

This is definitely an article to read and these are definitely some doctors to watch.

Saturday, April 19, 2014


The April meeting was great!  Always nice to see familiar faces and have long distance members call in.  We talked about a lot of things, including some online community groups.

I brought the educational doll along to introduce to the group.  Kim took a picture of Frank and I with the doll, who remains nameless at this point.  We were talking about having a naming contest in the future.  We also discussed some additional ways we could increase visibility.  One of those is to find a way to have a 'traveling' hydrocephalus representative, follow it online through social media venues (Facebook, Twitter) and see how far it could go, as well as what signatures it could gather.

We also discussed how to rebuild our numbers.  So many members have moved out of state and don't keep in touch anymore.  We really want to build up our numbers, as well as visibility in the community.  It would be great to generate more interest in the group and hydrocephalus, in general.  I would love to see some of the area media cover hydrocephalus, and us, more thoroughly.  It would also be great to find some corporate sponsorship(s) so we could increase the published materials and events we do.

We looked at the sample shunts that were included with the doll, as well as the two posters.  Kim took those home with her to keep with our other things, in storage.

We are sending Medtronic our Thank You card for the doll and the samples they sent us.  We are SO appreciative.  The doll certainly breaks the ice and opens doors to having the conversation about hydrocephalus with others.  You can't help but notice the looks it generates.  People who would otherwise not ask any questions seem more inclined to do so with the doll as the icebreaker.  I love it!  Thanks, again, Medtronic!!

It seems that we frequently talk about variety with hydrocephalus, which seems odd to some.  We discussed the many variables with the condition and how every case really is unique.  Part of that is cause.  There are so many causes of hydrocephalus that one 'cure' isn't realistic.  What would be applicable for a preemie wouldn't necessarily be something that would work for an adult with Normal Pressure Hydrocephalus (NPH).  For a variety of reasons, those parents who are fixated on 'a cure' don't seem to appreciate the history of the shunt, or how hydrocephalus is treated now, vs the past.  Many also don't seem to grasp the concept that we don't need to be 'fixed'.

It is this desperate search and a goal to 'fix' us that leads people to thinking that herbal medicine can 'cure' hydrocephalus.  It also leads people to not getting treated, when treatment can be the difference between severe brain damage and minimal brain damage.  Several years ago, we got a call from a woman who had self-diagnosed (via the Internet) her son with hydrocephalus after he had been abused.  She called and said that the child was "in a dark room in (her) house" and was trying to get around the reality of going to an ER and having the abuse reported.  Unfortunately, she was never able to be contacted again.  I often wonder what happened to that child and if she took our advice, the only advice we could give her, to take the child to the nearest ER.  She never answered her phone when we tried to follow up.  The idea that there was a child, not being treated, with possible hydrocephalus, will always bother me.

It is a real shame that we are also seeing doctors, who should know better, making assumptions about what our lives will be like when they diagnose it during pregnancy.  There is simply no way of knowing what that person will be able to accomplish in his/her lifetime.  Assuming that it is going to 'be a vegetable' and be a burden to its parents is simply not living in the real world.  Our group, alone, has folks who were diagnosed as infants, who went to regular school (K-12), college and have been employed, raised families and had full lives.  Telling parents that their child will live in constant misery and have an uproductive life is short changing everyone--including themselves.  There is no way to tell how many surgeries someone will have.  Some may have a lot of them over a lifetime, while others won't.

I'll be posting some pics later.

Tuesday, April 15, 2014

April Meeting


Hard to believe that we are already looking at the April meeting!  It will be this Saturday, April 19th, from 12:45 pm to 3:00 pm in the Casey Conference Room at Swedish Hospital's Cherry Hill campus.  Drop ins & kids are welcome to attend.  We love seeing new faces!

We'll be talking about last month's Brain Awareness event at the UW and I'll be bringing the new hydrocephalus doll that was generously donated by Medtronic.  I've been thinking of a lot of projects where we could use the doll to help in explaining hydrocephalus to others.

Plans are also in the works for Brain Awareness 2015.

I'm hoping to post photos from the event shortly.

Looking forward to seeing everyone!

Thursday, April 10, 2014

The Doctors TV Show & Spina Bifida


Today (April 11, 2014) The Doctors aired a segment on spina bifida and actually explained what a neural tube defect is!  They spoke with a young mother from Eastern Washington state about her experience, finding out her unborn daughter had spina bifida (the show didn't address hydrocephalus). 
Andrea (the young mother) spoke of receiving the diagnosis and the doctor giving her the option to terminate the pregnancy, after telling her all the horrible things that were going to be her daughter's future.  Hard to believe that in 2014 we still have doctors who don't see the potential of positives for us, but the negatives and that they see termination as a viable option.  When the reality is that we are often quite capapble, despite the challenges we face, of doing great things.

Andrea went on to talk about a rare 'cluster' of neural tube defect births in a three county area of Eastern Washington state that the CDC has no explanation for.  She spoke of drinking well water, living near an apple orchard where pesticides are used and living near the Handford Nuclear Reservation.  The latter has had several cases of workers on the clean up project coming down with unknown illnesses.  This tri-county area has had four times the statistical number of neural tube defect cases than anywhere else.  This state also has an unusually high number of cases of MS and breast cancer.  Connected?  Who knows!

What has been consistant is Hanford telling the public one thing and the facts later turning out to be something else.

I've spoken about research here.  I'm not against research, especially in these kinds of cases.  Finding out causes and prevention for this is important.  However, this is one aspect of the spina bifida and hydrocephalus issue.  It is about preventing congenital hydrocephalus, not 'fixing us' with some one-size-fits-all 'cure.  Finding a solution to this issue isn't the same as dealing with hydrocephalus that is acquired through brain bleeds in preemies, head injury, accident or concussive incident(s).

I'm still glad that The Doctors addressed this issue in some way, though.

Thursday, April 3, 2014


A very interesting, provocative article is on the site.  It addresses the issue of spouses who face the changes in their relationship with their partner after a TBI (or any other disability, really).  This is a rarely discussed issue, but a very important one.  It can/does change the tone of a relationship, with a spouse becoming caregiver, overshadowing the spousal relationship.
This site ( is great.  They have a lot of valuable information for those living with brain injury and their families, friends, caregivers.  Respite care is very important and also rarely addressed.  Arranging for respite care is an important way for families and those around the injured person, as well as the injured person themselves, to take a break from the stresses of living day to day with the newfound limitations and changes to life.
The same site has an interesting article addressing children, education and brain injury.  In general, this is a wonderful tool for families, friends, caregivers and those who are living with brain injury.

Thursday, March 27, 2014


Just wanted to add our heartfelt thoughts and prayers to the survivors of the Oso, Washington landslide.   It has been such a shock to everyone.

I also wanted to add our group's thanks to the first responders and the subsequent folks who are helping to search for survivors and clean up after this horrific disaster.

My mother's family is from a small town in Iowa, about the same size as Oso.  I totally understand the connections of the community members.

The Schulte Family: One Year Anniversary of DUI Accident

I can't believe that it has been a year since the tragic accident,  caused by a repeat drunk driver, that took the lives of Dan Schulte's parents & forever altered the lives of Karina (Dan's wife) & their son, who was just weeks old at the time.  The news has, somewhat, addressed the damage done to the survivors, but not enough attention, in my opinion, has been focused enough on the lasting impact left by the careless, senseless, selfish act of, yet another, drunk driver.

For Dan's young wife to have to relearn to walk, talk and live again after receiving a severe TBI, then having a stroke, is a challenge no one should have to endure.  Again, at the hands of someone who has demonstrated, time & time again, what little regard they have for others, is SO wrong.

Our members have been talking about this case for a year now.  As our group is so aware, traumatic brain injury (TBI) can happen to anyone, at any age, through no fault of their own.  In this case it was a family taking a walk with their newborn baby, just walking down the sidewalk.  Our thoughts and prayers have always been with the family. 

Saturday, March 22, 2014



Thank you, from the bottom of our hearts, Medtronic for the shunt doll and supplies.  We greatly appreciate the gift.  It will be used for many years to come at our events, including Brain Awareness events at the University of Washington.  It will also be a great addition to our supplies for classroom presentations.

It was a welcome surprise to receive it yesterday when I came home.

I'll be taking it to the April 19th meeting at Swedish Hospital's Cherry Hill campus.  As always, we will be meeting in the Casey Conference Rm in the hospital's dining hall, from 12:45 pm to 3:00 pm.  We'll have a lot to discuss, in addition to the new doll.

Thanks, again, Medtronic!

Wednesday, March 19, 2014

RE: Seattle Helicopter Crash Near The Space Needle


Our thoughts and prayers are with the families of the photojournalist & pilot of the helicopter, as well as those impacted by the horrific accident.  It was a shock to everyone, from the whole media community (especially KOMOTV & KING5, who shared use of the helicopter) to residents who have watched the work these two victims did for decades.  While we didn't necessarily know their names, they were as much a part of the news delivery to the region as those whos faces we recognize.  The images and information they delivered to the viewers of the region were compelling in so many ways.

Over ten million people visit the Seattle Center and Space Needle every year.  Thank goodness this didn't happen during one of the most popular times for tourists/visitors to the area.  It was a bit too close for me.  I've worked on the Seattle Center grounds, off and on, for many years.  This happened just off the Seattle Center grounds.

I'm sure that this will also be a topic discussed at the April meeting, just because it will still be on our minds and in our hearts.

Yesterday they interviewed a number of local newspeople who knew the pilot and the photojournalist, most of them were longtime co-workers.  Many of those interviewed are people I grew up watching, and who are now retired.  It was great seeing them, but sad to see them back onscreen for such a tragic situation.


Monday, March 17, 2014

March Meeting

As always, it was great seeing familiar faces at the meeting.  Also always look forward to new faces at each meeting.
We reviewed how the Brain Awareness open house event went.  While there were a few less kids, parents and teachers there this year, we all agreed that it was very successful.  As I've said before, we did miss the regulars that were unable to attend this year's event.  We are already looking forward to next year!
We  talked a bit about other issues, like CTE.  It seems that there is something new discovered about CTE almost daily!   It was great having some hand out materials from the Sports Legacy Institute (SLI) at our table this year.  The hand out materials were taken by almost everyone--especially parents and teachers.  There were a few coaches in attendance, so we had a tie-in with the CTE issue.
The Sunday Seattle Times (March 16th) had a very compelling article about a former Seahawk who was found to have died from complications from CTE.  I'm hoping to be able to reprint the article or at least have a link in the future.
One of the tv stations, locally, also did an interview with a former Olympic soccer player who had to leave the sport because of complications from her one and only concussion.  She still has complications years later!
Looking forward to April's meeting.  2014 is going by so fast!

Tuesday, March 11, 2014


Hard to believe that we are already looking at the March meeting for 2014!  It will be held this Saturday (March 15) from 12:45 pm to 3:00 pm in the Casey Conference Room at Swedish Hospital's Cherry Hill campus (17th & E. Jefferson).
We will be discussing this month's Brain Awareness event, plans for the 2015 event & our class presentation later this month, as well as what we are doing personally.
As always, we are looking forward to new faces.  Drop ins & kids are welcome.

Tuesday, March 4, 2014


The Brain Awareness Open House event at the University of Washington was a great success!  We saw several hundred students (grades 4-12) from Western Washington schools.  Answered a lot of questions about hydrocephalus and handed out lots of literature about all types of the condition.
We saw kids from 9:30 am to 1:30 pm, but it didn't seem as chaotic as it has in some years past.  Don't get me wrong, we still saw throngs of kids, teachers and parents during the event, which is always great.  As always, it was tiring, but in a good way.
Unfortunately, my surprise didn't happen, but I'm looking forward to next year.  I'm hoping that the same surprise will happen at next year's event.
This year's event had exhibits that were returnees, as well as new ones.  The preserved brains and spinal cords were back.  Very popular with the kids, particularly the grade school boys!
I should have photos to add to the blog shortly.  The organizer took some and Dean Andersen, Kim's dad, took some.
Again, I want to thank Medtronic for sending the squishy brains and 'stuff' to hand out.  We missed our usual shunt rep, but we soldiered on with our foam head and shunt demo.  I'd also like to thank National Hydrocephalus Foundation's (NHF) Debbi Fields for sending us newsletters and 'stuff' to add to the table.  I also made a point to hand out the Sports Legacy Institute (SLI) information about concussions.  That was very popular with teachers and parents.  We also has some updated hydrocephalus information.
Looks like we're going to be doing at least one class presentation at the end of the month.  It should be interesting, being able to answer questions from the kids and give them a more personal perspective from those of us living with hydrocephalus, as well as a parent or two with many years of experience.
I'm going to go take a nap now.  I'm SO tired!!

Tuesday, February 25, 2014


Brain Awareness 2014 Event

Hard to believe that the UW's Brain Awareness (BAW) Open House event is just a week away!  We will be having a booth there with lots of information and 'stuff' relating to hydrocephalus--including members of our group.  We are looking forward to talking with parents, teachers and Western Washington students (grades 4-12).  It is our big, annual outreach event that we always look forward to doing.
I just got a huge box from Medtronic and a package from the National Hydrocphalus Foundation (NHF).  Thanks in advance to Leanne, Carli & Dave at Medtronic for their assistance.  Medtronic has been part of our booth in years past, unfortunately, they won't have a rep there this year, but looking forward to 2015 already!  Thanks, in advance, too to Debbi Fields at NHF for sending back issues of the newsletter & the pamphlets.  Thanks, also, to Sports Legacy Institute (SLI) for their literature to include in our exhibit.

Still lots of work left to do, although I'm already getting things started for next year.  I'm hoping that our 'surprise' will come through for this year's booth.  If not, we'll plan on it for 2015.  I'm hoping that we'll also have pictures from the event to post here.
We're looking for corporate sponsorship to make some ideas for 2015's event happen.  If anyone knows of any companies or individuals with an interest in brain issues, generally and hydrocephalus, specifically, please email me & let us know.  As always, I do encourage those with an interest to also attend one of our monthly meetings.  Drop ins & kids are welcome.  We welcome anyone with an interest in brain issues and hydrocephalus.
We will be spending part of the March meeting reviewing the open house event, but otherwise, we have open discussions.

Sunday, February 16, 2014

February Meeting


We discussed our plans for the UW's Brain Awareness Open House event on March 4th.  We will be meeting several hundred students from Western Washington schools, which often includes some home schooled kids, to talk about the brain.  Our exhibit is focused, of course, on hydrocephalus.  We also tend to talk about acquired hydrocephalus through brain injury.  What little most people know of hydrocephalus rarely includes the realities of brain injury and acquired hydrocephalus.  In coming years I'm hoping that we are able to have literature about CTE, which right now is talked about mostly as it relates to concussions and sports--specifically football, however it is increasingly being found in cheerleaders and others who have participated in youth sports & who suffered even one concussive event.  That can also apply to veterans.

We talked among ourselves about CTE and acquired hydrocephalus--mostly as it relates to young folks.  We often talk among ourselves about the older population acquiring what used to be referred to as the spontaneous form of hydrocephalus, where a head injury or concussion wasn't involved.  Now it is referred to as Normal Pressure Hydrocephalus (NPH).

Unfortunately, as I've mentioned here before, NPH is all too often mistakenly diagnosed as Alzheimer's, Parkinson's or some other form of dimentia, which only delays critical treatment that can minimize the damage caused.  But that needs to happen in a timely manner to be most effective.  We've talked at meetings about people we've seen who have many of the indicators of NPH, but who have been diagnosed with Alzheimer's, Parkinson's or a "Parkinson's-like" syndrome.  The shuffling walk, downward look, along with signs of memory loss can all indicate NPH.

We also talked about members who live far away and are unable to make many meetings & often don't attend the Brain Awareness event, but who have in the past.  We would love to see them on a more regular basis & see them at the event in March.  Personally, I'd like to see some articles in area publications profiling a few of our members, in general, as part of our outreach and because these are folks who have very compelling stories to tell about overcoming obstacles.

I sent out notices to the media about our involvement with the Brain Awareness event, hopefully we'll be seeing some of them there or at least hear from them in the coming weeks.  Again, a few of our members have said they would be willing and interested in telling their stories as a way to generate awareness of the condition, as well as the group.

We had the pleasure of a conference call with one of the group's friends who lives on the east coast.  It is always great to talk to friends and members of the group who are far away, but who still want to participate.

I did hear from Medtronic, the shunt folks.  We will have a rep at our booth next month.  It will be great to have Dave back for another year.  He shows the kids how a shunt works and explains why it is used.  Our members can talk about the history of the shunt and Dave can talk about the most up to date technology in treating hydrocephalus.

Hopefully, our surprise for the exhibit will happen.  I'm crossing my fingers.

Looking forward to the March meeting where we can talk about the event and start planning for 2015!  I'm also hoping that we'll have pictures to post here & on our members' Facebook pages.

Monday, February 10, 2014



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.

Monday, January 27, 2014



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.

Tuesday, January 21, 2014


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!!

Wednesday, January 15, 2014


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!