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.

2014 BRAIN AWARENESS OPEN HOUSE EVENT--COMING SOON!

Brain Awareness 2014 Event

Hard to believe that the UW's Brain Awareness (BAW) Open House event is just a week away!  We will be having a booth there with lots of information and 'stuff' relating to hydrocephalus--including members of our group.  We are looking forward to talking with parents, teachers and Western Washington students (grades 4-12).  It is our big, annual outreach event that we always look forward to doing.

I just got a huge box from Medtronic and a package from the National Hydrocphalus Foundation (NHF).  Thanks in advance to Leanne, Carli & Dave at Medtronic for their assistance.  Medtronic has been part of our booth in years past, unfortunately, they won't have a rep there this year, but looking forward to 2015 already!  Thanks, in advance, too to Debbi Fields at NHF for sending back issues of the newsletter & the pamphlets.  Thanks, also, to Sports Legacy Institute (SLI) for their literature to include in our exhibit.

Still lots of work left to do, although I'm already getting things started for next year.  I'm hoping that our 'surprise' will come through for this year's booth.  If not, we'll plan on it for 2015.  I'm hoping that we'll also have pictures from the event to post here.

We're looking for corporate sponsorship to make some ideas for 2015's event happen.  If anyone knows of any companies or individuals with an interest in brain issues, generally and hydrocephalus, specifically, please email me & let us know.  As always, I do encourage those with an interest to also attend one of our monthly meetings.  Drop ins & kids are welcome.  We welcome anyone with an interest in brain issues and hydrocephalus.

We will be spending part of the March meeting reviewing the open house event, but otherwise, we have open discussions.



February Meeting

FEBRUARY 2014 MEETING

We discussed our plans for the UW's Brain Awareness Open House event on March 4th.  We will be meeting several hundred students from Western Washington schools, which often includes some home schooled kids, to talk about the brain.  Our exhibit is focused, of course, on hydrocephalus.  We also tend to talk about acquired hydrocephalus through brain injury.  What little most people know of hydrocephalus rarely includes the realities of brain injury and acquired hydrocephalus.  In coming years I'm hoping that we are able to have literature about CTE, which right now is talked about mostly as it relates to concussions and sports--specifically football, however it is increasingly being found in cheerleaders and others who have participated in youth sports & who suffered even one concussive event.  That can also apply to veterans.

We talked among ourselves about CTE and acquired hydrocephalus--mostly as it relates to young folks.  We often talk among ourselves about the older population acquiring what used to be referred to as the spontaneous form of hydrocephalus, where a head injury or concussion wasn't involved.  Now it is referred to as Normal Pressure Hydrocephalus (NPH).

Unfortunately, as I've mentioned here before, NPH is all too often mistakenly diagnosed as Alzheimer's, Parkinson's or some other form of dimentia, which only delays critical treatment that can minimize the damage caused.  But that needs to happen in a timely manner to be most effective.  We've talked at meetings about people we've seen who have many of the indicators of NPH, but who have been diagnosed with Alzheimer's, Parkinson's or a "Parkinson's-like" syndrome.  The shuffling walk, downward look, along with signs of memory loss can all indicate NPH.

We also talked about members who live far away and are unable to make many meetings & often don't attend the Brain Awareness event, but who have in the past.  We would love to see them on a more regular basis & see them at the event in March.  Personally, I'd like to see some articles in area publications profiling a few of our members, in general, as part of our outreach and because these are folks who have very compelling stories to tell about overcoming obstacles.

I sent out notices to the media about our involvement with the Brain Awareness event, hopefully we'll be seeing some of them there or at least hear from them in the coming weeks.  Again, a few of our members have said they would be willing and interested in telling their stories as a way to generate awareness of the condition, as well as the group.

We had the pleasure of a conference call with one of the group's friends who lives on the east coast.  It is always great to talk to friends and members of the group who are far away, but who still want to participate.

I did hear from Medtronic, the shunt folks.  We will have a rep at our booth next month.  It will be great to have Dave back for another year.  He shows the kids how a shunt works and explains why it is used.  Our members can talk about the history of the shunt and Dave can talk about the most up to date technology in treating hydrocephalus.

Hopefully, our surprise for the exhibit will happen.  I'm crossing my fingers.

Looking forward to the March meeting where we can talk about the event and start planning for 2015!  I'm also hoping that we'll have pictures to post here & on our members' Facebook pages.

NAT GEO MAGAZINE BRAIN ARTICLE

NATIONAL GEOGRAPHIC MAGAZINE ARTICLE ON BRAIN

The February, 2014 issue has a great cover article on the brain and scientific research.  Definitely worth the read.  They talk about upcoming possibilities, as well as recent developments.  Didn't see anything about hydrocephalus specifically, but still it was very interesting.

I know that I've been accused of being against brain research, which is NOT true.  I'm just frustrated by this 'need' some have to 'fix' hydro and who see all of us with it as needing to be 'fixed'.  There are so many breakthroughs yet to come, generally, in neuro-research, I find it facinating.  There was a time when the medical community knew nothing of folic acid or its role in congenital hydrocephalus.  Knowing about it has greatly reduced the number of congenital hydrocephalus.  If only those in the media would define what 'neural tube defect' is, it would be more clearly understood.

No matter what the breakthroughs in neuroscience research are when it comes to the brain in general and hydrocephalus specifically, there are so many causes (accident, concussion, TBI, spontaneous--NPH...) that there can never be one definitive, one-size-fits-all 'cure' out there.  Prevention is the best option, which means education and knowledge.  I've mentioned to a researcher about my theory that my family may have (on my mother's side) a particularly low folic acid lcvel.  Back in 1901, when my great-uncle died of hydrocephalus at a month of age, folic acid wasn't known about.  His hydro 'just happened".  Maybe it was just a statistical occurance, but the theory could actually be fact, but that doesn't appear to be an area of interest for many researchers or their funders.

Education and being the living examples of living well with hydrocephalus is why the support group takes part in the annual Brain Awareness Open House event at the University of Washington.  We don't all 'suffer' with hydrocephalus, we live with it and have productive lives.

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.