Tuesday, September 24, 2013

September Meeting

September Meeting 

September's meeting was great!  We were small and had hoped that some new faces would come, but they didn't.  We still had a great meeting.  We had a conference call with a member on the east coast, which is always nice.

Among the things we talked about was how everyone has been doing and some topical news items, as they relate to hydrocephalus.  So many associate hydrocephalus only with spina bifida or as a neural tube defect on its own.  There are many causes and it can be acquired at any age.  We are, as far as I can find, the only hydrocephalus support group in Western Washington that offers moral support and information to families, friends, caregivers and those OF ALL AGES living with the condition.  The adult populations get left out, most of the time.

I notice that there is another big push for those research dollars, rather than for advocacy.  If only some of those expressing an interest in research would advocate for living the best life possible, rather than trying to 'fix' us.  There is a place for research, but not at the expense of those who DO live with the condition daily.  For some that is more of struggle than for others, but as we are always saying, every case is unique. It is a real shame that we're still seeing medical professionals giving new parents the old doom and gloom predictions for the unborn, advocating for termination, rather than focusing on the positive.  There is no way to know what potential the unborn with hydrocephalus have before birth.  None.  If someone looked at my brain scans, they might think that I was at death's door.  Yet, I'm not, far from it.  I'm very much a functioning person with lots of potential left in a very full life.  I'm not saying that the road has been easy, it hasn't, but the challenges have worth overcoming.

My mother was told all sorts of horror stories about how my life would be.  She was encouraged to turn me over to the state and "forget (she) ever had a child (me)."  Like that would ever have happened!  She was threatened with being denied access to me in the hospital when she went to the hospital's library to find out what she could about my condition.  She was also threatened with being denied access to me because she was (gasp) holding other babies in the nursery.  Back in 1961 they didn't appreciate the importance of holding infants.  It was also 'suggested' that she not visit me so much in the hospital, because I cried when she left.  Thank goodness I was doing something normal!!

My mother was told I would be a vegetable and die by the time I was 13 yrs old.  Left in the care of the state, that prognosis would probably have been the case.  I recently celebrated my 52nd birthday.  I drive, I cook and shop for the family.  I'm far from being that vegetable that they predicted I would be and I'm living a very full and active life.  Everyone with hydro that I've met has overcome those stereotypes and is living the best life they can, for them.

I was reading where someone posted that there has been no significant improvement on the shunt in the last fifty years.  So untrue!  There have been MANY improvements.  We've gone from being manually drained (over draining was always a possibility with this method) to having programmable shunts that make invasive surgeries less common.  Not eliminating them, but greatly reducing the need for them.  There are cases of hydrocephalus that can be diagnosed before birth and in some cases, shunt surgery can be done before birth, also greatly reducing brain damage possibilities.  But again, we don't know for sure what areas of the brain are effected or to what degree that will dictate someone's potential, until they are born and be allowed to develop into who they are.

My original shunt(s) were primative by today's standards, but after I was 2 yrs old I went 13 years without a shunt surgery, or surgery of any kind.  After my revision in 1977 (which I found out later was unnecessary) I went 6 years without a shunt surgery.  In 1983 I had a staph infection in the tubing, probably caused by an unrelated, elective surgery I had in 1982.  In 1983 I had the infected tubing removed and haven't had any tubing for over 30 years.  I also haven't had a hydrocephalus related surgery in that time.  I'm not saying that is the case for everyone, but having a surgery every 18 mths isn't everyone's story either.  Again, every case is unique.

I realize that without research and the efforts of many scientists, the improvements on the shunt wouldn't have happened.  I also agree that research is needed.  However, the objection I have is to the idea that we need to be 'fixed' and can't live productive, full lives (whatever that is to each person) without that 'cure'.  There are so many causes that a one-size-fits-all 'cure' is truly impossible.  What IS possible is lessening the need for shunts, appreciating the real dangers in concussive incidents at any age, finding cures for tumors that impact the flow of csf (cerebral spinal fluid) and changing the mindset that no damage can happen to the brain when it is shaken or kicked.  We never hear people, like Dr. Oz, or The Doctors talking about what a neural tube defect actually IS, or the importance of women of child bearing age knowing their folic acid levels and how that can play a significant role in prevention of both spina bifida and hydrocephalus.  What we DO hear is how bad fortified flours are, when one of the things that fortified flours were created for was to increase the folic acid in foods because so many women were deficiant in it.  The cases of hydroephalus and spina bifida DID go down.  The neural tube is developed before most women know they are pregnant, so increasing consumption of foods high in folic acid after finding out they are pregnant is too late.

As part of National Hydrocephalus Awareness Month, I spent a lot of time sending out a number of emails to local public relations firms, hoping that some of them would have some clients interested in doing some tie-in advertising with us.  One responded, but said that his clients are Internet and social media based, as well as being based in places other than Washington state.  So short sighted!  A tie in with social media would be great for both them and us.  Where they are based shouldn't really be of concern, since we are talking about an online presence, plus tapping into the potential of reaching many more through social media!  I just keep thinking of all those folks thinking that they are alone in their hydrocephalus experience, when that is SO not the case.

Two of our members are going to be taking a video production class series.  I'm hoping that this could be another area of outreach that we could utilize.  My mind is racing with ideas.  I'm already thinking about next September and efforts to increase our visibility for National Hydrocephalus Awareness Month 2014.  I'm also working on the Brain Awareness Open House event for 2014.

Look forward to seeing more new faces at the October meeting.

Tuesday, September 17, 2013



It is always sad to lose someone, especially someone so young.  Add the element of the unnecessary, illegal helmet to helmet hit and its avoidability and the tragedy reaches a new level.

So many remain unaware of the very real dangers of concussions and traumatic brain injury (TBIs).  We are coming to the end of National Hydrocephalus Awareness Month and I couldn't find one word from the sports reporters about it or the avoidability of acquiring hydrocephalus through contact sports, like football.  In the coming weeks we will hear about the promising life of Damon Janes, but little or nothing about how avoidable this was.  Helmets are, honestly, a false sense of safety.

More than what goes on inside the helmet is what goes on with the brain inside the skull, which is rough and jagged, not smooth or soft.  In small children it used to be known as Shaken Baby Syndrome.  In teens & adults it is simply a traumatic brain injury (TBI) and that is as far as most reporters take it, falsely believing that the audience "wouldn't understand" if it was explained.  A bruise to the brain or a brain bleed can/does lead to increased pressure on the brain, which can be caused by altering the flow of the fluid that bathes the brain & spine.  You don't "walk off" the effects of a hit to the head, period.  The person who received the blow may not know that they are danger.  The potential patient can think they are fine, especially if they don't have any reference point to go by.  Just looking at them isn't going to tell you what you need to know.

A couple of years ago I spoke with a police representative locally who was amazed that someone could have a brain bleed, or bruise, think they were fine, go to bed and never wake up.  That is the reality of a TBI, especially a closed head injury.

Not just coaches, but parents and players need to be more aware of the potential dangers in having their kids playing contact sports.  I'm not saying never play, just to be very aware of the downsides, as well as the positives.  Rules about what hits are legal and not also needs to be taken more seriously.  It isn't about chickening out or not being a member of the team, it is about long term care and a life away from the field.

Shunts have come a long way, but they are a treatment, not a cure.  The only cure is prevention.  In this case, making sure that hits like the one Mr. Janes took, are appreciated for what they are--dangerous & potentially deadly.

Looking forward to Saturday's meeting.  We will be meeting in the Casey Conference Room at Swedish Hospital's Cherry Hill Campus (17th & Jefferson, Seattle) from 12:45 pm to 3:00 pm.  Drop ins & kids are welcome, as well as anyone wanting information about hydrocephalus.

Friday, September 6, 2013


The September meeting will be 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).  Can't believe that September is here already!!  As always, we welcome drop ins and kids to our meeting.
I've been making a lot of outreach contacts, via email, the last week or so, with mixed results which I expected.  It is always disappointing to find so many not realizing that hydrocephalus is not 'just' a kids' illnes/condition.  Those kids grow up and live full lives--hello!!  Not to mention the families, caregivers and friends of those kids and the adults they become.
As I've said before, our focus is on living a full, rewarding life with hydrocephalus, not searching for 'the cure'.  There are simply so many causes that a one-size-fits-all 'cure' is never going to happen.  In a lot of cases, the key is prevention.  Even that isn't reasonable.  We are always going to have kids, and adults, taking chances and seeing concussions as 'no big deal', when it IS.  Those of us living with the condition know what a big deal it can be!  It isn't going to be reasonable to expect contact sports to not have head injuries/TBIs/concussions being a part of it.
I have a difficult time believing that those retired professional atheletes would have appreciated the potential problems/issues of their decision to be involved in their contact sports of choice.  For years now, we've been hearing brain researchers and those doctors dealing with the brain on a daily basis expressing concerns about 'heading the ball' in soccer.  Even if players hit the sweet spot, deficits in brain funtion have been found, however short or long term.
I'm not against kids taking part in sports and being active, but coaches and parents need to be aware of the negatives, as well as the positives.  In some states (like Washington) kids playing contact sports aren't allowed to re-enter the game if they've taken a shot to the head, until they have been cleared by a team physician.  That means more than a simple 'look 'em over', it means really testing them, to be sure that there isn't any subtle, like a brain bleed that can't be detected simply by looking at the kid.  Or expecting the kid to know whether he/she is healthy enough to play.  A person may not know they have a brain bleed or bruising of their brain.
We are also starting work on our table(s) for the UW's Brain Awareness Open House for 2014.  This year's event was a great success and, as always, we are on the lookout for 'stuff' to top last year's event.  Sponsorships for give away items (reuseable bags, caps, tee-shirts, etc.) are always something we are looking for.  We are a 501(c)(3) organization and have been for sometime, so donations are tax deductable.
I've also been looking at some possible fundraising ideas.  I'll be talking about them at the September meeting.  Most of what I've been doing for the last week is looking for resource lists to be added to.  Even those that don't list us on their websites are often willing to keep our information for future use or give to their members moving to the Washington state area.
Looking forward to the 21st!