SEPTEMBER IS NATIONAL HYDROCEPHALUS AWARENESS MONTH

This month's meeting I want to discuss ideas for  September's National Hydrocephalus Awareness Month.  I've sent out some feelers, but got no responses, for some ideas.  I was hoping to have heard back from some of them, either way.

I would like to see some of our members doing some radio and print interviews, if they are more comfortable doing that.  I had hoped that one of our members, who is a professional writer and reporter, would have been able to write something about living with the condition.

There should be some community events that we could take part in.  I've tried, for a couple of years now, to generate some interest in some of the area's magazines and online sites.  Unfortunately, people think of hydrocephalus as 'just' a birth defect and nothing more.  They also assume that we all have spina bifida and that we are all living lives of suffering.  I see Awareness Month as having the potential to defy those assumptions and stereotypes.

I know that articles aren't going to be a magical answer to this, but they could contribute to enlightening people about the facts of hydrocephalus.  Particularly that it can be acquired at any time in life.  Unfortunately, I haven't been able to find some answers to my own questions--like the numbers for acquired hydrocephalus in various age groups, excluding congenital.  That includes finding out the numbers for hydrocephalus acquired after a concussion, or several.  When it comes to the latter, research is still being done that could answer some of those questions.

September feels a long way off still, but 2014 is going by so fast!  Doesn't seem like it is July and Seafair time again, already.

As always, this month's meeting will be on the third Saturday of the month, from 12:45 pm to 3:00 pm in the Casey Conference Room at Swedish's Cherry Hill campus (17th & Jefferson). 

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.

JUNE MEETING

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.

INTERIM POLICE CHIEF (SEATTLE POLICE DEPT) REVERSES DISCIPLINE OF OFFICER

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.

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.  

May 2014 Meeting Summary

This month's meeting was interesting.  We discussed hydrocephalus history and plans to do more research on various aspects of the subject.  The topic brought up the issue of the 'cure' that so many newer parents seem to have an obsession of.  I've brought this up before, along with my views, which are often shared by others with the condition.  It isn't that we are against research into hydrocephalus, just that the idea that we all need to be 'fixed' or that we are all 'suffering' and need some one-size-fits-all approach to ending the condition isn't where we feel all energies need to be trained on.

To see where hydrocephalus, and its treatment, have been and where we are today, it is why we are grateful for the strides that have been made.  I recall one of my neurologists saying that if the math portion of my brain hadn't been damaged by the hydrocephalus, I would have made a good doctor.  However, if I didn't have hydrocephalus, then I wouldn't have the hyper-awareness of my brain, or my interest in how the brain works!  I also wouldn't have any interest in the possible genetic aspect of my hydrocephalus.  As I've said before, if I didn't have this condition (it isn't a disease) I would think of my brain the way most people think of their big toe.  I wouldn't think of it, unless I injured it or had on a tight fitting pair of shoes.

I also remember being told, by a new parent to the hydrocephalus experience, that he couldn't understand why "you people get so upset about research".  Actually, he also said that I was against research and implied (many times) that we adults with hydrocephalus are incapable of understanding the complex issues around the condition.  As though those of us, adults, who have had a lifetime of experience in dealing with various aspects of the condition don't know what we are talking about!!  Then again, he and his wife said that they didn't need to hear from parents with over fifty years of experience of having 'kids' with hydrocephalus.

Exploring various aspects of hydrocephalus history is going to be interesting.  I'm looking forward to it.

Another subject, which I want to bring up at next month's meeting, is this discussion of Ms. Clinton's head injury several months ago and Karl Rove's opinions about it.  He seems to conveniently forget that Ronald Reagan had a head injury after falling from a horse.  He also was in the early stages of Alzheimer's when in office.  No one said 'boo' about that then.  He wasn't saying that the President had no business being in office.  Sorry, to those who don't believe that President Reagan didn't have Alzheimer's until after he left the White House, but the medical profession has stated in more than one source, that people with Alzheimer's have the disease for a decade or more prior to definitive diagnosis.  That would have put President Reagan smack in the middle of his time in office.  There are those who also question whether the fall from the horse and subsequent head injury didn't leave him with possible hydrocephalus, not as a result of the Alzheimer's, but because of the fall.

The idea that because someone has had a head injury that they are suddenly incapable of decision making is not based on fact.  People go on after head injury to have full lives, with the ability to make decisions remaining in tact.  In fact, most people with head injuries go on to drive, raise families and enjoy their lives without having their mental health or abilities being in question.

An Apology

My Apology For Spelling Error

My apology for the spelling error in the previous post.  I misspelled anencephaly.

Changing subjects a bit, I have been contacted with a question about support groups (specifically in eastern Washington state) for parents of anencephaly babies.  We couldn't find anything in our searches.  Anyone knowing of an existing group, or interested in starting one can contact us.