Upcoming August Meeting

The last summer meeting for 2015!  How fast time has gone this summer.

As always, we will be meeting on Saturday, from 1-3 pm in the Casey Conference Room at Swedish Hospital's Cherry Hill campus.  Drop ins are welcome.

This will be our last opportunity to brainstorm ideas for bringing attention to hydrocephalus & the group, especially for September, as well as the rest of the year.  A reminder, September is National Hydrocephalus Awareness Month, so any ways to get the word out about the condition is welcome.

If we can generate enough interest, we may be able to bring back the annual picnic.  In years past we would have a picnic at one of the Seattle parks.  It was a fun activity and a chance for people to meet.

September: National Hydrocephalus Awareness Month

I'm looking at several options for September, to help raise awareness of hydrocephalus in Washington state.  September is going to be here before we know it!  Many of the ideas I've had would need to be planned out further in advance.  Maybe for 2015!

Ideally, I would love to have an event a week during the month for raising awareness.  I've contacted some people who are interested in including their businesses in this.  One thing I would like to do is a dinner or brunch type of event.  I'm looking for more ideas.

I've had a PSA idea in my head for awhile too.  It would be great to see that happen.

It IS Seafair time right now.  Someday I would like to see us have a place in the festivities.

While I know that many want to focus on raising funds for 'The Cure', our focus is on awareness of the many aspects of hydrocephalus and living the best lives possible with the condition.  There is still SO much to be done in this area.  There are aspects of research that are very compelling and we want to get the word out about those findings as well, we are simply not focused on funding research.

NATIONAL HYDROCEPHALUS AWARENESS MONTH--SEPTEMBER

September is coming fast!  This is National Hydrocephalus Awareness Month and we are, as always, looking for ways to bring awareness to the issue of living with hydrocephalus.  For us, obviously, this is a daily issue and while it is great that we have a national movement of awareness, we need to keep that concept alive twelve months out of the year.

I have been looking for ways to combine that with fundraising ideas for the group.  We have a few programs in the Seattle area that the group needs to be looking at participating in, that would both raise awareness and funds for us, as a 501(c)3 nonprofit organization.

I've also been looking at various events (fairs, health fairs, etc.) that we might be able to include in our outreach projects.  Right now, our biggest event is the UW's Brain Awareness Open House, which is a great event--we love taking part every year, but we need to find some additional events to participate in throughout the year.

It would also be great if we could find some sponsors to help us with participating in some of the events that require money for booth participation.

Admittedly, I should have been trying harder to get some articles in local and regional papers and magazines for September's awareness month.  Awareness is about much more than looking for research dollars.  It is about informing the public about ALL that hydrocephalus is (and isn't), not just focusing on one aspect, that of finding research dollars.

Another aspect of awareness is about letting those living with the condition know that they aren't alone and that groups, like the Hydrocephalus Support Group, Inc., are out here for them to participate in.  That includes family members, friends, caregivers and those in the medical community as well.  All too often, we (and those close to us) are left feeling isolated with this condition.

As I always say, we look forward to seeing new faces at the monthly meetings and increasing our membership.  The next meeting is on September 21st, from 12:45 pm to 3:00 pm in the Casey Conference Room at Swedish Medical Center's Cherry Hill Campus (17th & Jefferson) in Seattle.  We welcome anyone with an interest in hydrocephalus.  Drop ins and children are welcome as well. 

August Meeting

A small but mighty August meeting.  We had one participant call in, so we had a conference call which was nice.

We discussed ideas for Brain Awareness Month, which is coming up in September.  Lots of ideas, but too little time.  Planning for 2014 is in the works.  I promptly came home and did some research into various health fairs and other ideas of expanding our outreach.  Next year I would love to see us have some articles in mainstream, local and regional newspapers and magazines.  I would also like to see us getting involved in some discussion groups on the topic of brain health and development.

I also sent out a bunch of emails to various producers of events in Western Washington to explore the idea of having booths at events in Summer, 2014.

We also touched on the issues parents have in dealing with having a child with challenges, not limited to hydrocephalus.

Thanks to Frank for bringing me a birthday card.  It was great!

Hope to see new faces, as well as the regulars at the September Meeting (9/21/13).

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.

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!

FEBRUARY MEETING

 This month's meeting was our last before March 5th's Brain Awareness Open House Event.  We are still getting 'stuff' together for the exhibit, including searching for a tv/dvd combo unit (small) so we can show a couple of dvds.

I'm still hoping to get some donated items from KING5, our local NBC affiliate.  They have donated things, like reusable bags, in the past.  The reusable bags were a big hit with the kids at the event.

We are looking forward to having Medtronic being a part of the exhibit again this year too.  Another aspect of our exhibit that has gone over well with the kids, as well as parents and teachers.

As always, I'm hoping for more than we get for each year's exhibit.  Some day I would love to have some neuro researchers with a focus on hydrocephalus at our booth.  I'd also like to have a 'wall' of brain scans to show kids how every one is unique.  While I found some online, I'm not sure how good the quality of them would be after being reproduced.

I'm also hoping to get a new charger for my camera and be able to post pictures from BAW.

At the February meeting we had a new person join us, which was great.  We got to hear his story and he got to hear our's.  Hope to see him at future meetings!

I was sorry to hear that Dr. Ben Carson, neurosurgeon, will be retiring later this year.  He is one of the country's premiere pediatric neurosurgeons.  He spoke at last week's Prayer Breakfast in Washington DC.  He was also on ABC's This Week.

Looking forward to the March meeting where we will be discussing BAW.

January Meeting Cancelled

Unfortunately, we are having to cancel the January meeting due to illness.  Several of us have this 'bug' going around and don't want to infect others.  We WILL have the February meeting, as scheduled.

Hope to see everyone in February!