October Meeting

The October meeting will be held on the 15th (the third Saturday of the month) from 12:45 pm to 3:00 pm in the Casey Conference Rm at Swedish Hospital's Cherry Hill campus.  We offer moral support and information to families, friends, caregivers and those (of all ages) living with the condition of hydrocephalus.  Feel free to drop in!  Kids are also welcome.

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.

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.