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.

SEPTEMBER MEETING--REMINDER

 

 

SEPTEMBER MEETING REMINDER

 

 

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!

 



SHUNT HISTORY

SHUNT HISTORY

In reading various posts online, primarily from newer parents, I felt that I needed to put things in perspective.  There is never going to be a one-size-fits-all 'cure' for hydrocephalus, simply because there are many causes.  Prevention is the best 'cure' out there, avoiding the condition all together, but that isn't realistic.

To say that there hasn't been any new development in shunts is simply not true.  When I was shunted in 1961, there had been a lot of progress made over the previous decade or so.  What was state of the art then is primitive by today's standards.  There was a lot, certainly not enough, research and development that went into improving shunts over the last fifty years.  Today there are many types of shunts, including programmables, that vastly improve the lives of those of us living with hydrocephalus.  Note:  We aren't suffering with hydrocephalus, we are living with it.  It is also a condition, not a disease.

While the statistics may be accurate, that sixty percent of us will always have some degree of dependance on others, that dismisses the forty percent that ARE independant and productive members of society.  Even those on full disability from the government can still be living productive lives, whether that is volunteering in their communities or working a few hours a week for money, if they are able.

We aren't just sitting around, waiting for death to overtake us.  A diagnosis of hydrocephalus isn't a death sentence.  It shouldn't be seen as such.  My mother was told by doctors to turn me over to the state, to be warehoused and it was 'suggested' that she forget all about me because I was going to be a vegetable and dead by the age of 13.  I'm about to turn 52 in a few days.  I never attended a 'special school', I went to regular, public school from K-12 and went to college.  I majored in culinary arts, so their prediction of me never being able to feed myself was proven untrue, along with a lot of other 'definite ideas' from the early 60's.

I certainly understand and appreciate parents' concerns about their children and the type of life they will lead, but that is true for every parent.  No child totally lives up to the expectations their parents had for them when they were born.

I'm not against research, in general.  I want to know as much as possible about my hydrocephalus, just as many of us do.  What I don't need is to be 'fixed' or underappreciated for what I have to offer because of some myths that persist about my condition.  I've met quite a few others, in my age group, who have had periods of time where their hydrocephalus was 'arrested'.  That doesn't mean it doesn't exist, only that it isn't active.  Mine has been 'arrested' for almost 30 years.  But it could become active again an hour from now, or never.  I have been without a shunt, which is rare, for over 30 years.  That too could change, but it doesn't dictate how I live my life.  My family and I focus on what I CAN do, rather than what I can't.

Today's new parents to hydrocephalus have access to lots of information, support groups and a much more accessible medical profession than my mother did in 1961.  She was told that she would be forbidden to see me in the hospital if she insisted on going to the medical library and finding out as much as she could.  She was also told that she shouldn't visit me in the hospital because when she left I would cry.  Thank goodness I did something NORMAL!  She was also told that she shouldn't touch or hold any of the other babies in the nursery.  Today, hospitals can't get enough volunteers to hold sick babies!!

We have people living productive lives in our group, who have been living with hydro for over 50 yrs.  We also have parents and family members who have been around us throughout our lives.  It is a challenge to live with hydro, but it is also a blessing rather than a curse.  It is scary for those who are new to it and sometimes it is scary for us as well, but it is definitely worth the fight to live.