July 2015 Meeting

We will be meeting in the Casey Conference Room on July 18th, from 1pm - 3 pm at Swedish Hospital's Cherry Hill campus (17th & Jefferson, Seattle). As always, no reservations are required & kids are welcome. The meeting is open to anyone wanting information about hydrocephalus and living with the condition.

The Final Countdown To 2015 Brain Awareness Open House!

Can't believe that we are almost there already!  I have the Hydro Doll packed up and ready to go.  Wish I had a stroller and wardrobe for it, but it will work with the scrubs.  Wonder how many people will mistake it for a real baby.

I always want more 'stuff' for the kids to see and take with them.  I'm already planning for 2016.

I do want to thank everyone who will be helping out at the booth this year, in advance.  Your help is so very appreciated.  It will be great to see everyone again.

I just can't believe that this is our 20th year doing this.  Seems like only yesterday we were getting ready for our first one.

Hoping to get photos to post here this year.  Can't wait till I get a good camera and can take some myself to post.

The Doctors TV Show & Spina Bifida

THE DOCTORS TV SHOW & SPINA BIFIDA--HYDROCEPHALUS (?)

Today (April 11, 2014) The Doctors aired a segment on spina bifida and actually explained what a neural tube defect is!  They spoke with a young mother from Eastern Washington state about her experience, finding out her unborn daughter had spina bifida (the show didn't address hydrocephalus). 

Andrea (the young mother) spoke of receiving the diagnosis and the doctor giving her the option to terminate the pregnancy, after telling her all the horrible things that were going to be her daughter's future.  Hard to believe that in 2014 we still have doctors who don't see the potential of positives for us, but the negatives and that they see termination as a viable option.  When the reality is that we are often quite capapble, despite the challenges we face, of doing great things.

Andrea went on to talk about a rare 'cluster' of neural tube defect births in a three county area of Eastern Washington state that the CDC has no explanation for.  She spoke of drinking well water, living near an apple orchard where pesticides are used and living near the Handford Nuclear Reservation.  The latter has had several cases of workers on the clean up project coming down with unknown illnesses.  This tri-county area has had four times the statistical number of neural tube defect cases than anywhere else.  This state also has an unusually high number of cases of MS and breast cancer.  Connected?  Who knows!

What has been consistant is Hanford telling the public one thing and the facts later turning out to be something else.

I've spoken about research here.  I'm not against research, especially in these kinds of cases.  Finding out causes and prevention for this is important.  However, this is one aspect of the spina bifida and hydrocephalus issue.  It is about preventing congenital hydrocephalus, not 'fixing us' with some one-size-fits-all 'cure.  Finding a solution to this issue isn't the same as dealing with hydrocephalus that is acquired through brain bleeds in preemies, head injury, accident or concussive incident(s).

I'm still glad that The Doctors addressed this issue in some way, though.

SHOULD I STAY OR SHOULD I GO?

SHOULD I STAY OR SHOULD I GO?

 

 

 

A very interesting, provocative article is on the brainline.org site.  It addresses the issue of spouses who face the changes in their relationship with their partner after a TBI (or any other disability, really).  This is a rarely discussed issue, but a very important one.  It can/does change the tone of a relationship, with a spouse becoming caregiver, overshadowing the spousal relationship.

 

 

This site (http://brainline.org) is great.  They have a lot of valuable information for those living with brain injury and their families, friends, caregivers.  Respite care is very important and also rarely addressed.  Arranging for respite care is an important way for families and those around the injured person, as well as the injured person themselves, to take a break from the stresses of living day to day with the newfound limitations and changes to life.

 

 

The same site has an interesting article addressing children, education and brain injury.  In general, this is a wonderful tool for families, friends, caregivers and those who are living with brain injury.

 

 



December 2013 Meeting

THE DECEMBER 2013 MEETING

The final meeting for 2013 was small, but successful.  We discussed several hydrocephalus and brain injury topics.  I am still trying to round up informational pamphlets to put into packets for the Seattle Police and other first responders.  NINDS sent me a pamphlet on hydrocephalus, which we appreciate.  I may include some of them in our exhibit/booth at Brain Awareness in March, as well as the informational packets.

We also discussed how the Affordable Care Act (ACA) is impacting us.  I'm still trying to find something that is affordable for me and will allow me to keep my current primary physician.  I really don't want to change, but may have to.  It is a real disappointment that the Washington state Medicaid program denied the facility my doctor is affiliated with in their coverage.

We also caught up with what has been going on with members since last month's meeting.  Great to hear that Brian's health is improving.  We miss him at meetings, but it is a long trek to get to Seattle.  Our thoughts and prayers are, as always, with him.

I'm still hoping to get more 'stuff' for the Brain Awareness booth this year, as always.  I'm also interested in finding other people in the community who have brain issue awareness and would be interested in spending even an hour or two of the four hour event, to help discuss the issue with the kids, parents and teachers attending.

HYDROCEPHALUS SUPPORT GROUP, INC. 2014 MEETING SCHEDULE

HYDROCEPHALUS SUPPORT GROUP INC MEETING SCHEDULE 2014

 

 

 

We meet on the third Saturday of each month, from 12:45 pm to 3:00 pm in the Casey Conference Room at Swedish Hospital's Cherry Hill campus (17th & Jefferson, Seattle).  We welcome anyone wanting information/moral support in living with the condition of hydrocephalus.  Drop ins are welcome.

 

 

Our meeting was founded by parents and those (of all ages) living with hydrocephalus over 20 years ago.  Every story is unique, just as we are.

 

 

January 18th

February 15th

March 15th

April 19th

May 17th

June 21st

July 19th

August 16th

September 20th

October 18th

November 16th

 

The 2014 Brain Awareness Open House at the UW will be March 4th.  We look forward to seeing Western Washington students (grades 4-12) at the event, along with parents & teachers.  If any teachers would like to have us speak to their classes about hydrocephalus & living with the condition, feel free to contact us.

 



SHAKEN BABY SYNDROME & HYDROCEPHALUS

SHAKEN BABY SYNDROME & HYDROCEPHALUS

Last night one of our local tv stations aired a piece about a string of sites online that promote shaking babies as a positive thing.  The reporter & the anchor mentioned that someone might think of this as a joke, but no one here is laughing.  Neither is the mother who went to the media when she saw one of these sites.  Her son was shaken a few years ago & sustained a severe brain injury that has changed many lives, forever.  He will never able to live to what was once his full potential, because someone, for whatever 'reason' lost control & inflicted unimaginable damage to a young child.

No one who understands what happens inside the skull during one of these shaking episodes can think there is any humor in this.  The inside of the skull is rough & jagged, not intended for the soft brain tissue to come in contact with it.  Cuts, brain bleeds and bruising can easily result.  These can lead to swelling & pressure being put on the brain, impacting a child in many ways, depending on the areas of the brain impacted.

Frankly, this is also what happens inside the skull when a concussion happens to someone older than a small child.  While it isn't called the same thing when it happens to an older child or adult, the results can be the same.  This is what happens when heads collide, be it on the football field or a car accident.

Unfortunately, there doesn't seem to be any information about the statistics of what damages take place, or how many cases of acquired hydrocephalus result from such impacts, but given that there is often significant brain bruising, bleeds, swelling & pressure (whether temporary or permanent) on the precious cargo, the brain, we know that it is a very real possibility of being one of many causes of acquired hydrocephalus.

Brain bleeds can be slow & unknown to the person or those around him/her.  Someone with an undiagnosed brain bleed can think that everything is fine, when it definitely is NOT.  Anyone with a brain bleed, adult or child, can think that nothing is wrong, go to bed & never wake up!  It is also not something those around the injured person would know about by just looking at the person either.  There can be some signs, but most of those aren't going to be picked up on by others.  Personality changes, thinking that they are doing one thing when they are doing something else, disorientation, getting beligerant, throwing up or having a headache can be present, but not always.  Taken out of context, these could all be attributed to someone coming down with a 'bug', being impossible to deal with or simply being 'a brat' (or in the case of an adult, they could be drunk).

Babies may be fussy or sleepy.  Not things that most caregivers are going to necessarily associate with a brain injury.

There is NOTHING funny or positive about brain damage.  While some can overcome the challenges resulting from the damage left by brain injury, it is hardly something to put a positive spin to.  It alters many aspects of the person's life, & those around him/her.  I can only hope that ignorance is what is behind someone thinking that there is anything 'funny' about this.

OCTOBER MEETING--REMINDER

OCTOBER MEETING--REMINDER

October 19th (Saturday) will be this month's meeting.  As always, 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).  Anyone with an interest or questions about hydrocephalus is welcome to attend.  We welcome drop ins & kids.  We look forward to seeing new & familiar faces.

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.

SHUNT HISTORY

SHUNT HISTORY

In reading various posts online, primarily from newer parents, I felt that I needed to put things in perspective.  There is never going to be a one-size-fits-all 'cure' for hydrocephalus, simply because there are many causes.  Prevention is the best 'cure' out there, avoiding the condition all together, but that isn't realistic.

To say that there hasn't been any new development in shunts is simply not true.  When I was shunted in 1961, there had been a lot of progress made over the previous decade or so.  What was state of the art then is primitive by today's standards.  There was a lot, certainly not enough, research and development that went into improving shunts over the last fifty years.  Today there are many types of shunts, including programmables, that vastly improve the lives of those of us living with hydrocephalus.  Note:  We aren't suffering with hydrocephalus, we are living with it.  It is also a condition, not a disease.

While the statistics may be accurate, that sixty percent of us will always have some degree of dependance on others, that dismisses the forty percent that ARE independant and productive members of society.  Even those on full disability from the government can still be living productive lives, whether that is volunteering in their communities or working a few hours a week for money, if they are able.

We aren't just sitting around, waiting for death to overtake us.  A diagnosis of hydrocephalus isn't a death sentence.  It shouldn't be seen as such.  My mother was told by doctors to turn me over to the state, to be warehoused and it was 'suggested' that she forget all about me because I was going to be a vegetable and dead by the age of 13.  I'm about to turn 52 in a few days.  I never attended a 'special school', I went to regular, public school from K-12 and went to college.  I majored in culinary arts, so their prediction of me never being able to feed myself was proven untrue, along with a lot of other 'definite ideas' from the early 60's.

I certainly understand and appreciate parents' concerns about their children and the type of life they will lead, but that is true for every parent.  No child totally lives up to the expectations their parents had for them when they were born.

I'm not against research, in general.  I want to know as much as possible about my hydrocephalus, just as many of us do.  What I don't need is to be 'fixed' or underappreciated for what I have to offer because of some myths that persist about my condition.  I've met quite a few others, in my age group, who have had periods of time where their hydrocephalus was 'arrested'.  That doesn't mean it doesn't exist, only that it isn't active.  Mine has been 'arrested' for almost 30 years.  But it could become active again an hour from now, or never.  I have been without a shunt, which is rare, for over 30 years.  That too could change, but it doesn't dictate how I live my life.  My family and I focus on what I CAN do, rather than what I can't.

Today's new parents to hydrocephalus have access to lots of information, support groups and a much more accessible medical profession than my mother did in 1961.  She was told that she would be forbidden to see me in the hospital if she insisted on going to the medical library and finding out as much as she could.  She was also told that she shouldn't visit me in the hospital because when she left I would cry.  Thank goodness I did something NORMAL!  She was also told that she shouldn't touch or hold any of the other babies in the nursery.  Today, hospitals can't get enough volunteers to hold sick babies!!

We have people living productive lives in our group, who have been living with hydro for over 50 yrs.  We also have parents and family members who have been around us throughout our lives.  It is a challenge to live with hydro, but it is also a blessing rather than a curse.  It is scary for those who are new to it and sometimes it is scary for us as well, but it is definitely worth the fight to live.

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.

February 2011 Meeting

Very productive meeting.  We discussed plans for the March 1, 2011 Brain Awareness open house even at MOHAI.  We have LOTS of literature to hand out, from various sources.  We are expecting at least one representative from Medtronic, one of the shunt manufacturers.  At last count there will be 650-700 middle & high school kids at the event.  Sign up for the event closed a few days ago.  Really looking forward to it.