JANUARY 2014 MEETING REMINDER

JANUARY 2014 MEETING REMINDER

 

 

 

 

This Saturday (January 18th) is our first meeting of the new year!  Looking forward to seeing faces, old and new.  The meeting will be in the Casey Conference Room, from 12:45 pm to 3:00 pm.  Drop ins and kids are welcome to attend.

 

 

Planning for the UW Brain Awareness Open House event in March continues.  I'm waiting for more materials and hand outs to be delivered.  The open house event should be as interesting as in years past.  We should be seeing around 700 (give or take) kids from grades 4-12 at the event, as well as parents and teachers.  As a group, we are looking forward to being able to do some outreach and generate some interest in the brain, in general and in hydrocephalus specifically.

 

 

I've also been sending emails to every possible resource, to let those new to the hydrocephalus experience, of all ages, know about us.  I've gotten lots of positive feedback.

 

 

Conversations at this month's meeting should be interesting!

 

 



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.

 



DECEMBER MEETING

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

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

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

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

The 'Knockout Game'

 

 

 

THE 'KNOCKOUT GAME'

 

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 



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.

VETERANS DAY

VETERANS DAY 2013

First, thank you to all service members, past and present, for their tireless service.  It IS greatly appreciated.

As always, it gets me back to thinking about those who have had to adjust to a 'new normal' after a head injury, particularly one that caused an acquired case of hydrocephalus.  My heart goes out to those having to make the adjustment personally, as well as family members, caregivers & friends, who also must make the many adjustments to incorporating hydrocephalus, or any resulting conditions, into life.

The support group has been trying, for quite sometime, to get the word out about our meetings for all those impacted by the fallout after a hydrocephalus diagnosis.  This month's meeting will be on November 16th, from 12:45 pm til 3:00 pm, in the Casey Conference Room at Swedish Hospital's Cherry Hill campus (17th & Jefferson, Seattle).  As always, drop ins are welcome, as well as kids.

I'm also getting ready for the transition now that Seattle has a new Mayor, Ed Murray.  I'm hoping that Mayor Murray will be open to expanding the conversation and education of the police, and other first responders, to acquired hydrocephalus and its prevention.  We are in the process of putting together a packet of information for the police department about acquired hydrocephalus, which is a first step in the right direction.

Looking forward to this month's meeting!