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.

May Meeting Discussion

The May meeting was interesting. We are going to be discussing more ideas for the 2015 Hydrocephalus Awareness Month in September, at the June meeting. We briefly talked about joining forces with some other groups, with brain issue interests/focus, to come up with some ideas for increasing visibility of the month. Hard to believe that September is only months away! Kim brought the Hydrocephalus Doll (Medikin) back from Olympia, along with a new wardrobe and a stroller. It is now a lot easier to take the doll from place to place. We had another double take in the elevator on the way to the meeting--someone thinking that the doll was a real baby, then realizing that it wasn't. That never gets old! I'll be looking for more clothing & 'shoes' for the doll in the coming weeks at thrift stores. The health fair Kim took the doll to was a success. We, as always, talked about possible ways to generate more interest in the meetings. It would be great to get our meeting numbers up again. I'm always encouraging people with an interest in brain issues, specifically hydrocephalus, to attend. So are the other members. We were also talking about re-introducing the summer picnic. We used to have an annual summer picnic, but for a variety of reasons, that fell by the wayside. We had donations made by some local stores and rented space in a couple of local parks. We always tried reserving a picnic shelter, so we had cooking space, picnic tables and running water. with more participation, it would be nice to bring the picnic back. I have a CT and neurosurgeon appt. scheduled for June.

Upcoming May Meeting

Hard to believe that we are already looking at the fifth meeting of the year! May 16th is the next meeting of the Hydrocephalus Support Group, Inc. As usual, we will be meeting in the Casey Room at Swedish Hospital's Cherry Hill campus (17th & E. Jefferson, Seattle) from 1:00 pm to 3:00 pm. We welcome anyone with an interest in hydrocephalus, no reservations needed.

March Meeting

Just a quick reminder that this Saturday is our monthly meeting.  As usual, we will be in the Casey Conference Room at Swedish Hospital's Cherry Hill campus (17th & E. Jefferson, Seattle) from 1-3 pm.  Anyone with an interest in hydrocephalus or brain issues is welcome.  No reservations required.

We will be talking about the Brain Awareness event from earlier this month.  Otherwise the discussion will be open.  We also will be discussing the opportunities to take our presentation to classrooms in the coming months.

Looking forward to seeing everyone!

Happy St. Patrick's Day

MAY Meeting Reminder

Just a quick reminder that the May meeting is coming up on the 17th.  As usual, we will be meeting in the Casey Conference Room at Swedish Hospital, Cherry Hill Campus (17th & Jefferson) in Seattle from 12:45 pm to 3:00pm.  Anyone wanting to share their hydrocephalus experience or wanting information about living with the condition is welcome to attend.  Drop ins are welcome.

Our group focuses on overcoming the odds and living the best life possible with the condition of hydrocephalus.  We offer moral support and information to families, friends, caregivers & those living with the condition, at any age.  Our core members have a cumulative 100+ years of experience living with the condition, which includes overcoming a lot of negative assumptions and stereotypes about living with hydrocephalus.  Sadly, there are still those who believe that we are incapable of having productive, fulfilling lives because of hydrocephalus, which short-changes everyone.

I brought the hydrocephalus doll to last month's meeting.  It is going to be a great teaching tool/visual aid.  I've already found that it has broken the ice with a lot of people, opening up a dialog that is welcome.  I'd much rather answer questions about it than live in silence.  I also like to encourage anyone wanting more information about the condition to attend our monthly meeting, or email us through the blog.

I'm already looking at the possibilities of showcasing the subject in September, for Hydrocephalus Awareness Month.  Part of that awareness needs to be that this condition is more than 'just a birth defect' it can, and does, happen at any age.  It can happen because of a brain injury or as a result of a tumor and even the spontaneous form--Normal Pressure Hydrocephalus (NPH), which most often occurs in older folks.  NPH can present to doctors with many of the same symptoms as Alzheimer's or Parkinson's, which is why it is estimated that it is misdiagnosed in 5-15% of cases.  Diagnosed early, treatment and management of NPH is very effective & can limit the damage done.  Untreated, the pressure builds and it can be fatal.

As Doctor Richard Ellenbogen (Seattle Children's Hospital; UW Medical Center/Harborview) has said in interviews, a child or young adult has a greater chance of acquiring a brain injury (including hydrocephalus) from a fall from a bicycle than on the football or soccer field.  However, that doesn't mean that concussions and brain injuries from sports shouldn't be taken seriously--far from it!

One of my areas of interest is in the training of first responders, who should know the signs and symptoms.  They should also be aware of the damage that can be done to the brain by using the head as a punching bag.
I just had my first appt. with a doc on my new insurance plan.  Wish I was able to keep my naturopath, but that wasn't an option.  However, I'm really hoping to get a real team in place, one that includes a neurologist and neurosurgeon.  I would also like to do as much research as possible into my own hydrocephalus.  I find it facinating, how the brain works and how my hydrocephalus impacts my life.  There are so many unanswered questions!  Some of them don't have answers--yet.

I'm also glad that I'm with the teaching clinic so Residents are exposed to hydrocephalus in the real world, rather than just from textbooks.  We are each unique, no case is exactly like another.  My congenital case isn't the same as someone who had a brain bleed (as a preemie or an adult).  My case is also not exactly the same as someone else with congenital hydrocephalus either.


We look forward to seeing everyone at May's meeting!

Take care.

THOUGHTS & PRAYERS TO OSO LANDSLIDE SURVIVORS

Just wanted to add our heartfelt thoughts and prayers to the survivors of the Oso, Washington landslide.   It has been such a shock to everyone.

I also wanted to add our group's thanks to the first responders and the subsequent folks who are helping to search for survivors and clean up after this horrific disaster.

My mother's family is from a small town in Iowa, about the same size as Oso.  I totally understand the connections of the community members.

The Schulte Family: One Year Anniversary of DUI Accident

I can't believe that it has been a year since the tragic accident,  caused by a repeat drunk driver, that took the lives of Dan Schulte's parents & forever altered the lives of Karina (Dan's wife) & their son, who was just weeks old at the time.  The news has, somewhat, addressed the damage done to the survivors, but not enough attention, in my opinion, has been focused enough on the lasting impact left by the careless, senseless, selfish act of, yet another, drunk driver.

For Dan's young wife to have to relearn to walk, talk and live again after receiving a severe TBI, then having a stroke, is a challenge no one should have to endure.  Again, at the hands of someone who has demonstrated, time & time again, what little regard they have for others, is SO wrong.

Our members have been talking about this case for a year now.  As our group is so aware, traumatic brain injury (TBI) can happen to anyone, at any age, through no fault of their own.  In this case it was a family taking a walk with their newborn baby, just walking down the sidewalk.  Our thoughts and prayers have always been with the family. 

October Meeting Update

The October meeting was very productive.  We had a conference call with a member who was out of state, which was great.  We discussed several topics.

I am still trying to get more literature and 'stuff' for our booth/display at the UW's Brain Awareness Open House event, tentatively scheduled for early March, 2014.  I want to include information on concussions and brain injury.  Still waiting for literature from HA.

We are going to be making informational packets to some of the first responders in the area, since many aren't aware of acquired hydrocephalus.  I'd also like to see us work with some other groups to create an informational resource/event that would be an educational effort.  As always, we are open to anyone who wants to find out about, or ask questions about hydrocephalus.  Generally, so many don't know about any area of hydrocephalus other than congenital or newborn brain bleed cases, or what it means to LIVE with hydrocephalus.

We also talked about the current focus on concussions & CTE.  There is so much more to find out in the coming years with this and how it impacts kids of today when they become older.  They may not see the results of concussions/closed head injury until their 40's or 50's, which most kids aren't thinking about.  It would also be interesting to see just how acquired hydrocephalus could play a part in some cases.  It isn't just about the encephalopathy (sp)--CTE--it is about countless other aspects not being talked about, like brain bruising and swelling of the brain after being knocked around into the sharp bone of the inner skull.

The brain IS precious cargo.

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.
  

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!

 



NFL Settlement

The issue of the NFL settlement touches a nerve, in terms of those who have acquired this and other conditions through concussion and other head trauma, specifically related to sports.  I saw one interview where a former player was saying that if he had been warned, or at least told of the possible injuries he might have rethought playing.  I seriously doubt it.  Kids in pee-wee leagues and school programs simply don't appreciate the potential dangers of what they are doing.  They just want to play the game, pure and simple.  Even if you told them all of the dangers, they wouldn't think twice about suiting up and jumping into the frey.

Frankly, that applies to parents and doctors as well.  Both groups of adults sign off on having kids playing contact sports, with the dangers being perceived as not being as relivant to their kids as it really is.  They also don't think about what could happen decades down the road.

I've spoken out about research into the 'cure' for hydro,  I'm one of 'those people' who don't feel that I need fixing.  However, I DO think that there is a HUGE place for research into acquired hydrocephalus and understanding the impact of concussive injuries on the brain, in general as well as it relates to hydro.  Personally, I would have liked to have seen some $$ required to be dedicated to brain research and awareness for the kids, parents, doctors and coaches.

It was a big deal when it became illegal to keep a kid in play after a possible head injury in school contact sports.  It was a step in the right direction.  The only 'cure' for acquired cases of hydro is PREVENTION.  Doing everything possible to prevent hydro is going to lessen the number of cases--be that acquired through a brain bleed or through head trauma--be that in sports or on the battlefield.