November Meeting: Happy Thanksgiving!

As always, it seems like only yesterday we were looking at the October meeting coming up.  Doesn't seem like November is here already!  This month's meeting will be held on the 21st, from 12:45 pm to 3:00 pm in the Casey Conference Room at Swedish Hospital's Cherry Hill campus (17th & Jefferson, Seattle).

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

Hope everyone has a great Thanksgiving.

October, 2015 Meeting

The October meeting was small, but very productive.  We had one conference call with Kim--she was out of state this month.

We did talk about 'Stir' and that led to talking about making adjustments to life when things suddenly change.  I really hope that more people read this book and that it opens a dialog with families about sudden changes in life and how we deal with it.  I do think that I came to this book with a very different experience than, say, my mother.  She had a whole different experience as the single parent dealing with the 'professionals' and a young child with challenges.

We also discussed ways to increase visibility in the community, as well as increase membership.  Unfortunately, we know that there are still people who keep hydrocephalus a secret or who feel alone in their experience.  It is far more common than they may have been led to believe.  One thing all of us do is remind folks that we meet on the third Saturday of each month from 12:45pm - 3:00 pm in the Casey Conference Room.  No reservations are required and kids are welcome to attend.

We are, as always, also looking for more 'stuff' to include in our booth at Brain Awareness Week's open house, usually held in March.  The date and time are to be announced.  But, again, as always, I'm planning the next one even before the present one is under way! 

CTE also came up as a topic of discussion, as it often does.  Hydrocephalus never seems to be part of the CTE discussion, in a general sense.  But it is often discussed at our meetings, because one way of acquiring the condition is through traumatic brain injury (TBI).  With the recent deaths of some high school students in Washington state and the definitive report on the cause of former NFL player, Adrian Robinson, Jr., it was bound to be discussed by us again.

Looking forward to the November meeting.  Hoping to see both new and familiar faces.

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). 

JULY MEETING

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.

DISCUSSION(S) FROM JUNE 2014 MEETING

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.

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.  

KOMO4 NEWS STORY ABOUT CLUSTER OF ANANCEPHALY

KOMO 4's COVERAGE OF CLUSTER OF ANANCEPHALY IN WASHINGTON STATE

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.