RERUN: FRONTLINE'S REPORT ON CTE

PBS ran part one of Frontline's report on CTE and the history of its discovery.  It is really a great report, one that pulls no punches.  Worth seeing again (and again)!

This is definitely something to have in one's personal collection/library.  As always I would like to see the connection made between head injuries and acquired hydrocephalus.

I'm sure that this is being shown again since the movie based on Dr. Omalu's work is coming out soon.  It wasn't lost on me that Dr. Omalu did an interview on GMA around the same time.

I disagree that football is going to be killed off by the publicity/awareness.  There will always be those who don't believe that CTE is a real risk for themselves or their children--no matter what.  Just as there will always be those parents who don't believe that there is an increased risk for their 4 year olds in playing pee-wee football.  There will also be those cheerleaders, soccer players, etc. who won't believe that any of this would/could ever happen to them.

November Meeting: Happy Thanksgiving!

As always, it seems like only yesterday we were looking at the October meeting coming up.  Doesn't seem like November is here already!  This month's meeting will be held 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, Seattle).

Friends, family members, caregivers and those, of all ages, living with the condition of hydrocephalus are welcome to attend.  Drop ins and kids are welcome.  We will be having one or two members calling in during the meeting.

Hope everyone has a great Thanksgiving.

October, 2015 Meeting

The October meeting was small, but very productive.  We had one conference call with Kim--she was out of state this month.

We did talk about 'Stir' and that led to talking about making adjustments to life when things suddenly change.  I really hope that more people read this book and that it opens a dialog with families about sudden changes in life and how we deal with it.  I do think that I came to this book with a very different experience than, say, my mother.  She had a whole different experience as the single parent dealing with the 'professionals' and a young child with challenges.

We also discussed ways to increase visibility in the community, as well as increase membership.  Unfortunately, we know that there are still people who keep hydrocephalus a secret or who feel alone in their experience.  It is far more common than they may have been led to believe.  One thing all of us do is remind folks that we meet on the third Saturday of each month from 12:45pm - 3:00 pm in the Casey Conference Room.  No reservations are required and kids are welcome to attend.

We are, as always, also looking for more 'stuff' to include in our booth at Brain Awareness Week's open house, usually held in March.  The date and time are to be announced.  But, again, as always, I'm planning the next one even before the present one is under way! 

CTE also came up as a topic of discussion, as it often does.  Hydrocephalus never seems to be part of the CTE discussion, in a general sense.  But it is often discussed at our meetings, because one way of acquiring the condition is through traumatic brain injury (TBI).  With the recent deaths of some high school students in Washington state and the definitive report on the cause of former NFL player, Adrian Robinson, Jr., it was bound to be discussed by us again.

Looking forward to the November meeting.  Hoping to see both new and familiar faces.

FOX NEWS (CHANNEL 11/13, SEATTLE) AIRING BRAIN FEATURE @ 10 PM ON 10/7/15

I saw the Fox News piece on last night's news and they spoke about a special they will be airing tonight about the inner workings of the brain.  If their previous work is any indication, this should be excellent.

Last night they had a teaser where they interviewed two prominant docs from the University of Washington--one was neurosurgeon Richard Ellenbogen and the other was a sports medicine specialist.

A big part of the reason for the special and the smaller segments devoted to brain injury is because Washington state has already had something like four TBIs with high school football players.  As much as the high school football gets the attention, other sports (LaCrosse, soccer, softball, etc.) are also impacted.  Statistically, more brain injuries occur from bicycle accidents than sports.

There is also the added attention to the Lystadt Law, which requires any high school coaches/trainers to remove a kid from play if a concussion is even suspected.  Kids aren't allowed back in the game until they have been evaluated by a medical professional.  I believe they said that now all states have some form of the Lystadt Law in place to protect kids in sports.

I'm looking forward to watching tonight.

OUR HEARTS & PRAYERS GO OUT TO THOSE IN ROSEBURG, OR

Our group's hearts and prayers go out to those impacted by the shooting at UCC in Roseburg, Oregon last week.  If we can be of any help to those facing survival with brain injury know that we are here.

Our October meeting will be on October 17th, from 12:45 pm to 3:00 pm in the Casey Conference Room at Swedish Hospital's Cherry Hill campus (17th & Jefferson, Seattle).  Drop ins & kids are welcome to attend, as well as anyone with an interest in hydrocephalus.  We offer moral support and information to families, friends, caregivers & those, of all ages, living with the condition.

September 2015 Meeting

I'd like to start by thanking the group for my belated birthday present.  I love the book.

It was great talking to Liz in a conference call.  Sorry my phone wasn't able to be used this time around.

We discussed many topics during the meeting.  Among them was the issue of finding "A Cure", which so many are seeking.  I've found that most of these folks are parents who are new to the hydrocephalus experience and still believe that we all 'suffer' with hydrocephalus, when that isn't the case.  As we agreed about at the meeting.  No single cure is ever going to be achieved because there are simply so many causes.  Focusing on the various causes and working from there for one of MANY 'cures', for lack of a better word, should be much more of where the focus should be.

The cause of a preemie brain bleed and resolving or peventing them would be the answer to one segment of the hydrocephalus population.  We already know that congenital hydrocephalus can be greatly reduced when women maintain a healthy level of folic acid throughout their childbearing years.  There is also a genetic link for some hydrocephalus.  Both men and women should know their family's medical histories.

Prevention is key for a lot of hydrocephalus.  Preventing brain bleeds is just one area.  Preventing accidents that lead to traumatic brain injury (TBI) is another key.  Making sure that as much prevention as possible is part of every bike ride and sport is another great preventative step.  However, it isn't a 'cure' it is about prevention to reduce risk.

Hydrocephalus is a manageable, treatable condition.  It isn't a disease, although many unfortunately use the terms condition and disease interchangeably.  We aren't all 'suffering', most of us are living our best lives with a condition that is simply part of our daily lives.  We are realizing our true value in beinig true to ourselves and the lives we've been privileged to live.  While hydrocephalus is part of life, it isn't the ONLY thing in our lives.

What many have brought up is the reality that most of the focus has been on children with hydrocephalus, with very little dedicated time put to adults living with the condition.  Those kids grow up and become adults.  Those adults go to college, get married, have kids & careers.  We are rarely shut away from the public or institutionalized simply for having a condition.  What also gets ignored are those who acquire hydrocephalus as adults--be it through accident or spontaneously, a condition now called normal pressure hydrocephalus (nph).

NPH is often misdiagnosed as Parkinson's, Alzheimers or some other form of dimentia, delaying or preventing treatment.  It is estimated that misdiagnosis occurs in 10-15% of cases before a diagnosis of NPH is made.  Unfortunately, a lot of the brain damage done is irreversable.

For those who think that shunts are 'barbaric' and 'primitive', I suggest doing research on how hydrocephalus was treated in the past, before the mid-1950's & 60's.  Even since then, shunts have been evolving, to the point where progammable shunts make invasive procedures less frequent.   At one time there was research being done on growing shunts from a patient's own tissues, to eliminate the risk of rejection and other complications.  We've come a long way in tissue harvesting and issues surrounding it, since the 70's when some of the literature was published.

We are all unique and the secret is to embrace those unique qualities, living life to its fullest.

July Meeting Update

The July meeting was a success.  Very rewarding.

We brainstormed ideas for generating more interest in the group, in general & we talked about ways (new & old) for September's National Brain Awareness Month.  We will be talking about this on social media in the coming month or so and look into scheduling this year's awareness projects that we've done previously.  Still looking for more ways to bring in more members.

Lots to bring to the table for the August meeting!  The August meeting will be on the 15th, from 1-3 pm in the Casey Conference Room at Swedish Hospital's Cherry Hill campus (17th & Jefferson, Seattle).

2015 is going by SO fast!!

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

December Meeting

Looking forward to the December meeting on the 20th.  As usual, we will be meeting from 12:45 pm to 3:00 pm in the Casey Conference Room at Swedish Hospital's Cherry Hill campus (17th & Jefferson, Seattle).  Drop ins & kids are welcome.

Starting in January, our meeting time will be from 1:00 pm to 3:00 pm on the third Saturday of each month, in the same conference room. 

2015 Meeting Schedule

In 2015 we will be meeting, as usual, on the third Saturday of each month, in the Casey Conference Room located in the cafeteria/dining area of Swedish Hospital's Cherry Hill campus (17th & Jefferson, Seattle).  We will be meeting from 1:00 pm to 3:00 pm.

As always, we welcome families, friends, caregivers and those (of all ages) living with the condition of hydrocephalus.  Drop ins & kids are welcome to attend.

The 2015 meeting dates are:

January 17th
February 21st
March 21st
April 18th
May 16th
June 20th
July 18th
August 15th
September 19th
October 17th
November 21st
December 19th (Happy Birthday Kim!)

Our November meeting for 2014 will be November 15th from 12:45 pm to 3:00 pm.

OCTOBER MEETING

The October meeting was small, although we did have a conference call during the meeting with a member who wasn't able to attend in person.  Overall the meeting was a good one.  Caught up on everyone's life since the September meeting.  Everyone is doing well.

I will be posting the 2015 meeting schedule shortly.  Thanks to Jennifer, at Swedish (Cherry Hill campus), we have our schedule already!

Again, a deeply felt thanks to the Great Wheel for showing their support of September's National Hydrocephalus Awareness Month by lighting up the wheel on September 29th.  As well as mentioning both the Hydrocephalus Support Group, Inc. & The Hydrocephalus Association on their Facebook page.

I had thought about bringing the Hydrocephalus Doll with me to this month's meeting, but decided not to.  May bring it to November's meeting.

July Meeting Update

We discussed ways to increase awareness of the group, our mission and hydrocephalus in general.  There are some tentative plans in the works for National Hydrocephalus Awareness Month in September, which is fast approaching.

We also have discussed more plans for the more distant future, including the 2015 September awareness month possibilities.

There is a possibility that we could do a Crowd Funding campaign to raise funds for an awareness campaign as well.  Specifics aren't firmed up, but a September campaign would be great--this year or next.

Lots of potential.

JULY MEETING

The July meeting is on July 19th, from 12:45 pm to 3:00 pm in the Casey Conference Room at Swedish Hospital's Cherry Hill campus (17th & Jefferson, Seattle).  As always, everyone with an interest in hydrocephalus is welcome to attend.

We do have a few things on the agenda.  I've been working on some promotional/marketing ideas for September--a few look like they are going to happen!  Very excited.

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.

April Meeting

APRIL MEETING

Hard to believe that we are already looking at the April meeting!  It will be this Saturday, April 19th, from 12:45 pm to 3:00 pm in the Casey Conference Room at Swedish Hospital's Cherry Hill campus.  Drop ins & kids are welcome to attend.  We love seeing new faces!

We'll be talking about last month's Brain Awareness event at the UW and I'll be bringing the new hydrocephalus doll that was generously donated by Medtronic.  I've been thinking of a lot of projects where we could use the doll to help in explaining hydrocephalus to others.

Plans are also in the works for Brain Awareness 2015.

I'm hoping to post photos from the event shortly.

Looking forward to seeing everyone!

March Meeting

MARCH 2014 MEETING

 

 

 

As always, it was great seeing familiar faces at the meeting.  Also always look forward to new faces at each meeting.

 

We reviewed how the Brain Awareness open house event went.  While there were a few less kids, parents and teachers there this year, we all agreed that it was very successful.  As I've said before, we did miss the regulars that were unable to attend this year's event.  We are already looking forward to next year!

 

 

We  talked a bit about other issues, like CTE.  It seems that there is something new discovered about CTE almost daily!   It was great having some hand out materials from the Sports Legacy Institute (SLI) at our table this year.  The hand out materials were taken by almost everyone--especially parents and teachers.  There were a few coaches in attendance, so we had a tie-in with the CTE issue.

 

 

The Sunday Seattle Times (March 16th) had a very compelling article about a former Seahawk who was found to have died from complications from CTE.  I'm hoping to be able to reprint the article or at least have a link in the future.

 

One of the tv stations, locally, also did an interview with a former Olympic soccer player who had to leave the sport because of complications from her one and only concussion.  She still has complications years later!

 

Looking forward to April's meeting.  2014 is going by so fast!

 

 



MARCH MEETING--THE HYDROCEPHALUS SUPPORT GROUP, INC

MARCH MEETING, THE HYDROCEPHALUS SUPPORT GROUP

 

 

 

Hard to believe that we are already looking at the March meeting for 2014!  It will be held this Saturday (March 15) from 12:45 pm to 3:00 pm in the Casey Conference Room at Swedish Hospital's Cherry Hill campus (17th & E. Jefferson).

 

 

We will be discussing this month's Brain Awareness event, plans for the 2015 event & our class presentation later this month, as well as what we are doing personally.

 

 

As always, we are looking forward to new faces.  Drop ins & kids are welcome.