Preparation For Brain Awareness

The booth for Brain Awareness is coming together.  It promises to be another rewarding year.  We got a box from the Hydrocephalus Association (HA), which is always helpful.  We have at least one rep from the shunt manufacturer, Medtronic attending, plus members of the support group.

The estimate is 700 or so kids (grades 4-12), plus parents and teachers.  Our exhibit should be full of information and lots of information from those of us living with the condition.

I'm also bringing the educational doll along.  This year the doll has a whole new wardrobe and a stroller, so transporting it will be much easier than previous years.  It is always a great conversation starter, wherever it goes.  We've started dialog with police officers, social workers and lots of others seeing it.  It DOES look very real and has been mistaken for an actual baby!

We will be having our monthly meeting on the third Saturday of March, which is the Saturday after Brain Awareness, which will be nice.  I'm sure that we will have a lot to talk about.

February Update

We wanted to thank the Hydrocephalus Association for sending us material(s) for the March event.  Brain Awareness Open House at the UW will be March 17th, from 9:30 am to 1:30 pm and we are expecting several hundred kids (grades 4-12) during the one day gathering.  There have been so many new brain oriented stories and ideas in the news over the last year, there is a lot to talk to them about!  Zika is just one of those.

We would also like to thank, in advance, Medtronic, for their annual participation.  It is always a pleasure to work with them on our table.

I would personally like to thank our members who come every year to talk with the kids and adults about living with the condition of hydrocephalus.  It is always great to see faces we don't always see because of distance, on a monthly basis.

As always, we are constantly looking for ideas for this year's, as well as the 2017, event(s).  I've seen a lot of great things online, but our budget wouldn't cover them.  The brain version of popular games, cups, mugs, tee shirts, etc.  All fun ways of opening up discussion about something most people don't give a second thought to.

'Stir': A great read!!

I spent last night reading one of the best books I've read in ages!  'Stir', by Jessica Fechtor (author of the 'Sweet Amandine' blog) is a great book, but those of us in the world of TBIs and other great brain journeys, can identify with her memoir about suddenly going from one life to another, unexpectedly.

I started it last night at 9pm and didn't look at the clock again until 1 am!!  I swore I'd read just a chapter more when I got up this morning, but four chapters later I was rushing to get out the door on time.

I immediately emailed members of the group about it.  Everyone needs to read this, whether they are new to the experience, a seasoned veteran or anyone around us--friends, family, etc.  Can't say enough about this.

Here We Go Again!

Let me begin by saying that I appreciate the dangers and challenges of the job(s) of first responders.  I understand that they are in a high stress job with lots of variables and that every situation presented to them has challenges, but that IS the job.

Just saw the video of the CHP officer using a citizen's head as a punching bag.  This seems to be the go-to place for officers to target, with little or no regard for the potential damage they can inflict.  Most probably don't even KNOW that they can be inflicting trauma to the brain that can cause many injuries, hydrocephalus being one of the many.  The victim isn't always capable of self-diagnosis in these situations.  Someone with no history of hydrocephalus wouldn't have the words to convey to a doctor anyway.

Apparently, this particular victim WAS taken to hospital and evaluated, medically and mentally.  I know of a couple local incidents where that wasn't the case.  In one instance the same officers who did the kicking about the head also thought he could "walk it off" and let him go home after declining medical assistance.  The police department rep I spoke with was obviously shocked when I told him that the victim could have had a brain bleed and been unaware of it, which could have led to brain damage or death.  He could have gone home, crawled into bed and never awoke the next morning.

I don't particularly care why the officer felt that this was necessary.  The point is, the risk is there and it is too great to justify in ANY situation I've seen documented.  The potential damage isn't the same as a bruised ego or a sprained ankle.

I also realize that most people aren't aware that hydrocephalus can be acquired at any age.  It isn't 'just' a birth defect.  It can be caused by any assault on the brain--intentional or not.  It can be caused by accident, brain tumor, concussive event(s), a brain bleed or anything that alters the production or flow of the cerebral spinal fluid surrounding the brain and spinal cord.  Slamming someone's head into sidewalks, highways or a building's exterior wall all put someone else's life at risk, somehow I don't see that as being justified in any of the situations I've seen documented. None.

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.

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.

FEBRUARY MEETING REMINDER

MEETING REMINDER--FEBRUARY

Hard to believe that it is February already!  This Saturday will be our second for 2014 and hopefully there will be a lot of new & familiar faces around the table.  It will also be our final meeting before the UW's Brain Awareness open house event, March 4th.

I'm looking forward to this year's Brain Awareness event.  Our booth should be very interesting & we will be meeting lots of Western Washington state kids (grades 4-12) during the four hour event, as well as parents & teachers.  It is always a fun event for us.  I'm hoping that a surprise I've been working on for awhile will happen at the event this year.  Crossing my fingers.

As always, I'm trying to get the meeting & the group listed as a resource on a number of fronts.  Not hearing back from a lot of people, but what else is new?!  It would also be great to find some funding for some aspects of events, like Brain Awareness, to help us do more every year with our booth.

It seems that with every new development in the CTE & brain injury stories, we find a connection to hydrocephalus.  Adding to that, the Normal Pressure Hydrocephalus (NPH) issues and we are finding more & more that includes hydrocephalus.

I am still shocked that there is even talk out there (some supposed scientists included) saying that Shaken Baby Syndrome isn't real.  Huh?!  The basic facts are pretty clear, the brain & spine of a child aren't developed yet & aren't strong enough to endure shaking.  Add to that the fact that the interior of the skull is rough & jagged, not rounded & smooth like the exterior & it is a disaster ready to happen.  The soft brain tissue was never meant to bang against the interior of the skull.  Even slight bruising or bleeding can cause serious, long term damage--particularly in children.

CTE is, in so many ways, the same thing.  The brain was never meant to make contact with the skull's interior--ever.  While someone may be functional after a blow to the head, it doesn't mean that there hasn't been any damage.  Some of that damage may not show up immediately, or even for years.  While helmets are giving a false sense of security to parents, coaches & players--of all ages, there is a sad reality that is increasingly difficult to ignore.

I will admit that it is a bit frustrating to see stories being done on the news about Alzheimer's & Parkinson's, with no mention of NPH--which is all too often missed because medical professionals mistakenly diagnose 5-15% cases of NPH as either Alzheimer's or Parkinson's.  NPH is treatable, especially if found early!  

I recently saw a tv interview with a victim of abuse.  As a child she had been slammed, head first, into a floor on several (?) occasions.  The interviewer attributed tremors & physical 'ticks' to the emotions in telling her story, but I was curious about the possible damage done to her head & spine with this abuse.  I noticed some of those tremors & ticks when she wasn't talking about the abuse as well, just more subtle ones.  Just an observation.

Hope to see everyone on Saturday.  For potential newcomers, we meet from 12:45 pm to 3:00 pm in the Casey Conference Room at Swedish Hospital's Cherry Hill campus (17th & E. Jefferson, Seattle).  Drop ins & kids are welcome.  We also welcome parents, families, caregivers & those wanting information about the condition of hydrocephalus, as well as those (of all ages) living with the condition.

DECEMBER MEETING

Happy Holidays!  This will be the final meeting of 2013--the year went by SO fast.  I'll be posting the 2014 schedule shortly.  December 21st, from 12:45 pm to 3:00 pm in the Casey Conference Room at Swedish Hospital's Cherry Hill campus will be our meeting this month.  As always, drop ins are welcome, as well as children & anyone wanting information about hydrocephalus.

I also want to take the opportunity to thank Swedish Hospital for their generous assistance in providing us with meeting space for the last several years.  It has been great having the space and being available to those in need of moral support in living with hydrocephalus.  We look forward to many more years of service to the community and the assistance of Swedish in that effort.

I would also like to thank the many friends of the group, and family members, worldwide, who have helped make the group a success.

I'm looking forward to 2014 with great anticipation.  Look forward to seeing new and familiar faces in the coming year.

The 'Knockout Game'

 

 

 

THE 'KNOCKOUT GAME'

 

 

How disturbing is this?!  Obviously, those participating in this 'game' haven't got a clue about the potential damage they can do with this.  Today's national news addressed a few of the deaths that were caused by these careless 'kids' who seem to think that it is 'fun' to knock someone out on the street.

 

As usual, I look at it from the hydrocephalus perspective.  This is one of the many ways that someone can acquire hydrocephalus--through a traumatic brain injury (TBI).  Hitting one's head against a sidewalk, curb or wall can/does cause such injuries.  I'm sure that this will be a subject of conversation at the December meeting of the Hydrocephalus Support Group, Inc.

 

I have no idea how this started or how to stop it.  I guess that until something happens to those who think this is a game, entertainment or funny it will continue.  As I've said before, someone who isn't hyper-aware of their brain isn't going to appreciate that precious cargo the same way as those of us who are living their lives very aware of their brain.  While I'm concerned about this in general, specifically, some stranger who isn't aware that someone already has a condition, like hydrocephalus or a TBI already, could SO easily prey on them, causing irreparable damage, or even death.  From everything I've seen/heard about this 'game', it is inflicted on complete strangers, so it is quite possible that someone with a pre-existing brain issue could be killed by these kids 'having fun'.

 

The November meeting was very productive.  We discussed ways of increasing our presence online and in Western Washington.  I'm looking at ways that we can get involved in more community events, as well as increasing the awareness of the condition with the general public, as well as first responders.

 

Also wanted to say Thank You to NINDS for sending us the newest hydrocephalus pamphlets to include in our media kits.  Looking forward to the Hydrocephalus Association's (HA) contribution of literature to include in the kits.

 

I'm also hoping that Seattle's new Mayor and his staff will include hydrocephalus awareness throughout the year, but especially during September (Hydrocephalus Awareness Month).

 

The Allen Institute, here in Seattle, is going to be expanding its brain research to covering CTE, which is great.  Founded by Microsoft's Paul Allen, the Institute has already done the brain mapping, which is available online.

 

I'll be posting the 2014 Schedule in the coming weeks.

 



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.