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.