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.

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.

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.
  

August Meeting--8/17

Just a quick reminder, the August meeting is this coming Saturday, from 12:45 pm to 3:00 pm in the Casey Conference Room at Swedish Hospital's Cherry Hill Campus (17th & Jefferson) in Seattle.  Drop ins & kids are welcome.  There is street parking, as well as two parking garages and direct bus service (#3 & #4).

We look forward to seeing new and familiar faces, as always.

Hard to believe that Hydrocephalus Awareness Month is in less than a month!  As always, we are looking for as many ways to reach out in the community, especially in September, to shed more light on this important issue.

July Meeting Round Up

The July meeting was a great succcess!  We had a new face this month, which was great.  Hopefully there will be more in the coming months.  We answered a lot of questions and had a great dialog.  It was also great to see a friend of the group attending this month, it was a very pleasant surprise!

It is always great to answer questions and make dealing with hydro a bit less daunting for family, friends, caregivers and those living with the condition.  As often happens, we got around to one of our pet peeves, the issue of labeling those of us living with hydro as being 'hopeless' and living less than fulfilling lives.  I mentioned one incident that, even years later, bothers me because it was so public and was one of the few times hydro was mentioned on a mainstream medical drama.  The doctor came to a couple and said, "Your child has hydrocephalus.  Your only option is to terminate the pregnancy, because the child will have no life."  Not only was this offensive, and untrue, in general, but the creator/exec. producer/writer of the show has a seizure disorder IRL--so even more so does HOW DARE HE! apply.  He had a platform that could have been used to both entertain and inform, but he chose to take the low road.  Thankfully, Gray's Anatomy has chosen the high, rather than the low, depicting a child living with hydro as being an active, functional person and the parents as leading normal lives, rather than constantly hovering, waiting for the next 'disaster'.

I was looking for some hydro related bumper stickers to possibly put on the new car, but kept finding these 'Find A Cure For Hydrocephalus' bumper stickers.  The opposite message from what I want.

We did mention, during our discussion, the research that had been done decades ago in terms of growing a shunt in the lab with the patient's own cells.  I can only imagine how far that could have progressed with the new knowledge of this kind of thing, generally speaking.  It would be great if the shunt tubing now used could be replaced with something grown from the patient's own cells.  But that isn't about 'The Cure' it is about improving treatment.

Honestly, the only Cure is really prevention.  Women of childbearing age making sure that they have healthy levels of folic acid in their system before getting pregnant (afterwards the barn door is closed) and knowing their family histories.  From there it is a matter of preventing post birth brain bleeds in preemies, preventing head injuries in sports & other activities.  Prevention also includes wearing helmets when bicycling or riding motorcycles, ATVs, snow mobiles, etc.  Lots of kids avoid wearing helmets while playing sports, but that is also necessary to prevent concussion as well as acquiring hydrocephalus--but these aspects of hydrocephalus are rarely, if ever, talked about.  Prevention also includes how our soldiers are treated when they are placed in harms way.  Ignoring or being unaware of the long range aspects of head injury (particularly closed head injuries) is dangerous and leads to undiagnosed hydro, or even misdiagnosed hydro later on.

I saw an interview with Sanjay Gupta a couple of weeks ago and I'm always waiting for him to discuss this issue, but he never does.  Someday it would be great to hear him talk about prevention and treatment, as well as what living with hydro involves.  But too many of the interviewers (including folks like Dr. Oz) dismiss hydro as being 'too complicated for the audience to understand', which I disagree with.  It also isn't nearly as 'rare' as the medical community would like us to believe.

This month's meeting was great!  Hope to see more new faces in the months to come.

JUNE MEETING

It was great seeing familiar faces!  We discussed a wide array of topics, from attitudes (from others) about living with hydrocephalus and misperceptions (again, from others) about what it means to have a hydro diagnosis to having a conference to call with a friend of the group who lives on the east coast.  It was all great!

Part of our mission is to overcome the myths and misperceptions of hydro, one major one being that those of us with the condition (not a disease) cannot live full lives.  We aren't always having surgeries or living limited lives in wait for something to happen.  It is one of my pet peeves, that it is assumed that we 'need' to be 'fixed' or 'cured' and that the only REAL focus should be on finding THE Cure, that one size fits all solution to 'fix' us.  Difficult to do when the causes are many and it can be acquired at any age!

As we often do, we discussed the history of the shunt and how far things have come since many of us adults were born, in the 50's and early 60's.  The idea of the programmable shunt was, at best, a dream of neuroscientists, but hardly what would have been considered within the realm of reality.  As far as research goes, I'm all for it, but not with the sole goal being to 'fix' us.  My journey has been an interesting one that I wouldn't change for anything.  I would be interested in finding out if mine is genetic, since I was a congenital (born with it), for instance.

I find it facinating that my brain can see scans of itself and learn about itself.  I would love to find out about what did and didn't develop in my brain during gestation (sp) but not with the goal being to 'fix' me or others like me.

It has been great seeing Dr. Richard Ellenbogen, a neurosurgeon at Seattle Children's and the UW/Harborview, on local tv talking about concussions.  So many folks just don't appreciate the seriousness of head injury, at any age.  Many simply don't know the symptoms of a concussion or a closed head injury.  Dr. Ellenbogen has also been an advisor to the NFL on the subject.

I recall talking with a Seattle Police Captain about closed head injuries and how it shouldn't be optional for someone they deal with to refuse being checked out before being allowed to go home.  He was stunned to find out that someone could have a brain bleed or bruising, NOT know it and not be capable of determining the signs or of acting in their own best interest, going to bed (sleepiness is a symptom) and simply never waking up, or waking up with a life altering situation.  The Captain had been one of those who wasn't aware of the symptoms or the seriousness of a head injury.

We also talked about continuing to reach out to folks we haven't seen, or heard from in awhile.  Even if just through Facebook or email, we would love to hear from those who haven't been reachable.  We like to keep in touch and hear what folks are up to.  We also have the ability to have conference calls for the meeting, as we did this month.  Those are great, especially for those who are far away or who don't have transportation.

We look forward to seeing everyone at the July 20th meeting.  We welcome drop ins, children and those with an interest in hydrocephalus.

December 2012 Meeting

Hard to believe that this was our final meeting for 2012!  As always, we had a great discussion about aspects of living with hydrocephalus, as well as a small holiday celebration.

In the last month I've been doing a bit of research about hydro research and spoke with a very interesting researcher.  It is always great talking to someone about our perspective, of living with the condition.  Then there is the issue of condition vs disease.  The neuro-science folks may use the terms interchangeably, but many of us see a HUGE difference between the two!  It is one of the reasons why I am always saying in my emails about our group that we are there for families, friends, caregivers & those (of all ages) living with the condition of hydrocephalus, because we aren't 'diseased' we are living with a condition & all the complexities that go along with that.

Some of the research being done is great & very interesting.  I am most interested in the possibility of science being able to 'grow' shunt tubing in the lab, using the patient's own cells.  What I'm NOT a fan of is the idea that there is one 'magic pill' that will 'cure' us.  There are simply too many variables with hydro to have one 'cure'.  There is effective treatment that is improving all the time--shunts.  The cause of hydro from a brain bleed is very different from hydro caused by a neural tube defect.  There are also those accidents and injuries during contact sports or car accidents.  The only way to 'cure' those causes is prevention.  Explaining what neural tube defects are & how women of child bearing age can prevent them is the only way to prevent, or lessen the risk of congenital hydro & spina bifida.  Finding ways to lessen, or eliminate, brain bleeds in preemies is another way to prevent the hydro complication.  Gaining a healthy respect for head injury & the potential damage is all about prevention of life altering conditions like hydro.  Along those same lines, we are continuing to see veterans return from being in harm's way far too often with acquired hydro, sometimes undiagnosed.

Not everyone with a shunt has horrible complications either.  While I know many who have had complications, I also know those who have overcome those complications and live very full lives.  It will be 30 yrs ago in January since I had any hydro related surgery!  I know that isn't true for everyone, but it also isn't true for everyone that we have complications every 18 mths or so either.  There are challenges, but it is SO worth overcoming those challenges & living the best life possible, without perpetuating the myth that we are all somehow suffering or living less than productive lives!

I will be posting the article that appeared in Parade magazine several weeks ago, about Normal Pressure Hydrocephalus (NPH).  It has generated calls to us with loved ones asking a lot of questions about how they can make sure that their loved one has the proper diagnosis.  It has surprised others that there is a 5-10% rate of misdiagnosis, with NPH being misdiagnosed as Alzheimers or Parkinsons.  Treated early, with a shunt, outcomes can be quite positive, with less potential brain damage than those left untreated.  Some patients with Alzheimers or Parkinsons have also been found to benefit from a treatment of shunt.

I will also be posting the 2013 meeting schedule shortly.  The schedule is going to remain the same--the third Saturday of each month, at Swedish Hospital's Cherry Hill campus (17th & Jefferson, Seattle), in the Casey conference room from 12:45 to 3:00 pm.  We welcome families, friends, caregivers & those (of all ages) living with hydrocephalus.  Drop ins & kids are welcome to attend.

As always, this time of year, we're looking for volunteers and donations for the Brain Awareness Open House event at the University of Washington.  It is a one day event reaching several hundred students from Western Washington state, parents & teachers.  It is a great outreach project for us.  It is part of the Brain Awareness Week program.  Hopefully, we will have a lot of 'stuff', in addition to our informational material and members to talk about living with the condition, as we did last year.

Fortunately, 2012 has been good to our members.  We haven't had problems with our hydro this year & hopefully, 2013 will be the same!

Happy holidays!  Happy New Year!

 

Correction For December Meeting

So sorry about giving the wrong date for the December, 2012 meeting.  We WILL be meeting this Saturday (not Monday) from 12:45 pm to 3:00 pm in the Casey Room at Swedish Hospital's Cherry Hill Campus.  Look forward to seeing everyone this Saturday!

July 2012 Meeting Reminder

Just a quick reminder that this Saturday is the July meeting at Swedish Hospital's Cherry Hill Campus (17th & Jefferson) in Seattle.  We meet from 12:45 pm to 3:00 pm in the Casey Room.  We welcome drop ins & children. 

I should have included that we discussed folic acid and the lack of media attention given to its importance in lessening the incidents of neural tube defects, which spina bifida & congenital hydrocephalus are just two examples.  Every women, of childbearing age, should know her folic acid levels and consult her physician (GP, OB/GYN) about what level should be maintained.

One of the main reasons for 'enriched' flour being used in so many of our prepared foods and ingredients like flour, is so that ALL women get additional folic acid.  There are also a variety of whole foods that are easily accessible in the produce section that are higher in folate (folic acid) than other foods.  I'll include a list later.