2016 Meeting Schedule

2016 Meeting Schedule

All meetings are from 12:45 pm to 3:00 pm in the Casey Conference Room at Swedish Medical Center's Cherry Hill campus (17th & E. Jefferson).  There is limited street parking, in addition to a parking garage.

We offer moral support and information to families, friends, caregivers and those (of all ages) living with the condition of hydrocephalus.  Drop ins are welcome.

January 16
February 20
March 19
April 16
May 21
June 18
July 16
August 20
September 17
October 15
November 19
December 17

March 17th we will be participating in the UW's 2016 Brain Awareness Open House at the HUB Ballroom on the University of Washington campus from 9:30 am to 1:30 pm.  We will, as always, be seeing several hundred school age kids, along with their parents and teachers, to talk about brain health and living with hydrocephalus.  We also let participants know that hydrocephalus can be acquired at any age.

Happy 2016!!

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.

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.

Monthly Meeting Reminder

Just a quick reminder that the September meeting will be held at Swedish Hospital's Cherry Hill campus, in the Casey Conference Room from 1pm to 3 pm on September 19th.  We look forward to seeing everyone.  Remember, drop ins and kids are welcome.

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

SEPTEMBER: NATIONAL HYDROCEPHALUS AWARENESS MONTH

Sorry I haven't posted for awhile.  Medical stuff going on & lots of conflicting opinions on what to do.  Went to see my neurosurgeon and GP resident disagrees with his findings.  So I'm caught in the middle.  Complicated story that could/should have been so much simpler!

Looking forward to this month's meeting on the 20th.  Hoping to see new & curious faces at this one & in the coming months.  Got started on social media this month & made lots of connections.  I've made our desire to build on our membership known, so hoping that we see some interested folks coming to the meetings, as well as those with their own hydrocephalus experiences to share.

As always, we will be meeting in the Casey Conference Room at Swedish Hospital's Cherry Hill campus from 12:45 pm to 3:00 pm.  The campus is located at 17th & Jefferson on First Hill in Seattle.  We welcome drop ins and kids.  Our focus is on living the best life possible with hydrocephalus.

I haven't yet got confirmation of the date & time of our publicity effort for the month.  I said that it would be great if it would happen the week of the meeting.  When I have confirmation everyone will be hearing about it!

AUGUST MEETING REMINDER

Hard to believe that the August meeting is coming up next Saturday, the 16th.  As always, we will be meeting in the Casey Conference Room at Swedish Hospital's Cherry Hill campus from 12:45 pm to 3:00 pm.  Anyone with an interest in hydrocephalus is welcome to drop by.

Also, hard to believe that next month is already National Hydrocephalus Awareness Month!  Still hoping to get some awareness projects done throughout the month.  But I have some medical 'stuff'--some hydrocephalus related--that I need to deal with.  I'm always hoping, every year, that awareness month gets more attention than it does.

This is also my birthday month!  How quickly they seem to come now, like it or not.

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.

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.

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!

 

 



JUNE MEETING

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

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

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

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

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

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

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

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

REMINDER: May Meeting on May 18th

REMINDER FOR MAY MEETING

This month's meeting will be May 18th from 12:45 pm to 3:00 pm in the Casey Room at Swedish Hospital's Cherry Hill Campus.  As always we welcome drop ins and anyone interested in the condition of hydrocephalus.  We also welcome children, as well as adults and those, of any age, living with hydrocephalus.

We look forward to seeing everyone!

The April meeting was very good.  As always, we had some lively discussions about aspects of living with hydrocephalus and caught up with everyone who attended.  We missed those who couldn't attend.  Maybe this month...

Unfortunately, my car was broken into during the meeting.  No one was hurt, just some minor (replaceable) items were taken.  The thieves even locked the car back up when they left!  This has never happened before and the car was parked in the parking garage!  Hoping it won't happen again.

I've changed my contact email, from hydropr61@hotmail.com to hydropr61@gmail.com.  Too many 'issues' in getting my hotmail account back, for the second time this year.  So I can be reached either by either gmail.com account (gf4lyfe@gmail.com or hydropr61@gmail.com). 

Locally, one of the tv stations aired a piece about a Swedish study on elderly adults and falls.  They talked about the increase in traumatic brain injury (TBI) to seniors who fall.  Very interesting study.

Hope to see everyone on the 18th!

AUGUST MEETING

This was a wonderfully productive meeting!  We discussed Hydrocephalus Awareness Month (Sept) & how to promote it & the group.  We brainstormed some ideas.  Unfortunately, the state of Washington doesn't do anything to promote Hydrocephalus Awareness Month, or hydrocephalus in general.  I tried generating some interest in it several months ago, hoping for a more supportive response.  Disappointing, but only proves that there is a need for more public awareness!

We also discussed aspects of shunts--in terms of pain, itching & post-surgical responses we've had.  Very interesting.

We also discussed Kathi Goertzen's passing & her courageous fight against her agressive (benign) tumors for the last 14 years.  Our group's thoughts & prayers go out to her & her family.  Her public memorial will be August 19th at 1 pm, at Fisher Pavillion near the Seattle Center.  Specifics can be found at KOMO TV's website.

Along the same lines, we talked about how some tumors can cause hydrocephalus.

We also discussed different types of seizures some of us have.

Again, it was a very interesting, productive meeting.  We look forward to the Sept. meeting!

July 2012 Meeting Reminder

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

JUNE 2012 MEETING

As always, it was great seeing our group again.  Time went by so fast.

Among other things, we discussed the upcoming Hydrocephalus Awareness Month in September and ways we can bring awareness to the condition & to the group.  We had a promising lead with a local radio personality who expressed support for the group & our mission.  However, that seems to have fallen through.  Hopefully things will change before Sept.  It would be great to do one or two radio interviews, talking about various aspects of hydrocephalus.

I got an email from an unknown person, who was asking about shunts.  In general, there are SO many of them and so much research going on at any given time that it is impossible to tell what type of shunt or even if it is specifically for hydro.

I'm looking forward to the next meeting, on July 21st, from 12:45 to 3:00 pm.  As always, we welcome drop ins & kids, as well as families, friends, caregivers & those of us living with the condition.  The Casey Room at Swedish Cherry Hill Campus has been a great meeting room for us.  It is located inside the dining room, just down the hall from Starbucks!

Brain Injury--Adults

We've been seeing and hearing quite a bit in the local Seattle press lately about adults with head injuries.  Specifically, James Foster, a young man from Puyallup who was beaten after complimenting a man on his car.  The brain damage is apparently permanent, although no reports specifically say anything one way or the other about hydrocephalus.  We would like to extend our moral support to the Foster family and let them know that if they would like to come to our meeting (June 16th is our next meeting, from 12:45 pm to 3:00 pm at Swedish Hospital's Cherry Hill Campus, 17th & Jefferson, in the Casey Room), they are more than welcome.

We've also been hearing the latest in the story of Christopher Harris, who was slammed against a wall a couple of years ago, by a Sheriff's deputy.  Like Mr. Foster, Mr. Harris' life was forever changed because of his head injury.  Not only were these men's lives changed, so were those of their families and friends.  These were preventable injuries, recieved through no fault of their own, except being someone else's victim.

These are just two cases getting attention right now.  Again, families, friends & caregivers are welcome to attend our meetings, although we do specifically talk about living with hydrocephalus.