April Meeting Announcement

Hard to believe that we are already looking at the April meeting already!!  It will be on the 16th, from 12:45 pm to 3:00 pm, in the Casey Conference Room at Swedish Hospital's Cherry Hill campus (17th & Jefferson, Seattle).  Drop ins are welcome.

We offer moral support and information to families, friends, caregivers and those (of all ages) living with the condition of hydrocephalus.

Looking forward to seeing everyone!

New Day NW/King5

How disappointing, on Wellness Wed. of New Day NW, their 'expert' on aging and brain health failed to mention Normal Pressure Hydrocephalus (NPH).  Since treatment is too often delayed because of misdiagnosis, commonly mistakenly diagnosed as Alzheimer's or Parkinson's.  Hydrocephalus, while not curable, IS manageable and treatable.  It isn't an automatic death sentence.

I've been hoping that a show, like New Day NW, would embrace hydrocephalus and showcase some of our members who have overcome great odds to live very full lives with their condition.  Unfortunately, hydrocephalus remains one of those conditions (not a disease) that is kept shrouded in mystery and secrecy.  We are constantly having to blow myths and stereotypes out of the water.  One of them being that we automatically have less productive lives.

Thank You, Dick Wolf & Chicago Med!!

Loved the November 24th episode of Chicago Med!  They had a story about an older woman, believed to have dimentia, who turned out to have Normal Pressure Hydrocephalus (NPH).  In addition, they got the facts right!  Sadly, it is true that eighty percent of NPH cases aren't diagnosed.  They are most often written off as having Parkinson's, Alzheimer's or some form of dimentia, so they go untreated.  No need to create drama where it naturally exists.  Only wish they had shown the installation of the shunt.  No one is perfect.

Another aspect of the story I loved was showing the woman on her way to living a full life afterwards.  It was also great showing the spouse's side of things.

The only other show that has done an excellent job with telling a hydrocephalus story has been Gray's Anatomy (Thanks, Shonda Rhimes!).  Showing us not 'suffering' with our condition, but living full lives is always something to be embraced and celebrated.

Last Saturday's meeting was great.  It was small, with some members being out of town early for the holiday.  We talked about what is going on with us this month.  We also had a conference call with one out of town member.  Another topic of discussion was ideas for the 2016 Brain Awareness event.  That is tentitively going to be in March, 2016.

April Meeting

The April meeting was very productive.  It was great having one of our out of state members being part of a conference call for part of the meeting.  Always a lot of great discussion and input.

I brought the hydrocephalus doll along so Kim & her mother could take it to a health fair today in the Lacey/Olympia area.  As always, there were a few second looks & a comment or two.  One said that it was a cute baby!  Another double take was from one of the neuro staff.  Fingers crossed that the health fair goes well.

At least I'm not alone in taking issue with the Durst letter and comment about having "full blown hydrocephalus".  In some of the footage I saw of him, it is quite possible he has NPH, but that has no bearing on his mental health as it relates to the possibility of him being a murderer and using it as part of some 'insanity' defense.  We all agreed that the implication is a very negative one that needs to be cleared up.

We talked a bit about issues with doctors, GPs as well as specialists.  A common topic for us.

I brought up a speaker I saw last Friday.  My mother & I went to a lecture at one of the Assisted Living facilities in town.  The speaker was a neurologist who specializes in tremors.  The lecture was quite interesting.  It would be great if we could find a way to have him speak at a meeting or at a symposium sometime.  The other nice thing was seeing how educated many of the attendees were on brain health!

April Meeting/Durst "I Have Full Blown Hydrocephalus"

Looking forward to the April meeting on Saturday, April 18th, from 1:00 pm to 3:00 pm in the Casey Room at Swedish Hospital's Cherry Hill campus (17th & E. Jefferson, Seattle).

One topic we will be discussing will be this week's 'revelation' about Robert Durst having (in his words) "...full blown hydrocephalus" Whether his defense team is going to try spinning this as part of an insanity defense isn't clear.  I'm hoping that isn't the case, since hydrocephalus isn't relevant to any aspect of murdering people.  Insanity and hydrocephalus aren't related.  Hydrocephalus isn't 'insanity' and what a great disservice to the hydrocephalus community if they are even entertaining such a notion.

I will also be bringing along the hydrocephalus doll this month.  It will be used the following week at a health fair in the Olympia area.

October Meeting!

Hi!  Can't believe that we are already coming up on the October, 2014 meeting already.  We will be meeting on October 18th, as always, we will be meeting from 12:45 pm to 3:00 pm in the Casey Conference Room at Swedish's Cherry Hill campus (17th & Jefferson, Seattle).  We welcome anyone with an interest in hydrocephalus.  Drop ins are encouraged.  Kids are welcome.

Looking forward to seeing familiar & new faces.  I will be bringing the hydrocephalus doll.

Smithsonian Article: Turbo-Charging Your Brain

The May, 2014 issue of Smithsonian magazine has a very interesting article, 'Turbo-Charging Your Brain' or 'Mindcraft' by David Noonan is very interesting.  The article talks about the colaborative work of neurosurgeon Kelly Foote and neurologist Dr. Michael Okun in furthering the development, and use, of deep brain stimulation (DBS) to solve or improve many movement disorders.  DBS can also be used to help with tremors associated with Parkinson's.

Everything about the brain interests me, but especially some of the movement disorders, some of which have a connection to hydrocephalus.  Specifically Normal Pressure Hydrocephalus (NPH), which is all too often misdiagnosed as Parkinson's, Alzheimer's or other conditions that involve dimensia and/or gait issues.  A shuffling gait and a downcast gaze are also signs of NPH.  Found early, treatment can be very effective in a patient maintaining a good quality of life.  However, early treatment is vital to meeting that goal.  NPH gets very little discussion in the mainstream media.  Just as hydrocephalus in general does.

While many in the hydrocephalus community look down on neurologists, I find it promising to see a neurosurgeon (Foote) and neurologist (Okun) working TOGETHER to find answers about what DBS can do to improve the lives of their patients.  It was Okun talking in the article about a movement issue with a "shuffling gait" that caught my eye, since that is one of the key signs of NPH.

This is definitely an article to read and these are definitely some doctors to watch.

New Article About Normal Pressure Hydrocephalus (NPH)

NEW ARTICLE ABOUT NPH

I just got an email, via MedLine, that was published on alz.org (The Alzheimers Association), about Normal Pressure Hydrocephalus (NPH).  Very informative and, IMO, critical for everyone with older parents.  Sadly, an estimated 5-15% of cases of Alzheimer's (& Parkinson's) are found to have been NPH that was misdiagnosed, because many of the symptoms are similar & most of NPH patients are older, fitting into the age range when medical professionals see those with Alzheimer's & Parkinson's.

Unlike Alzheimer's & Parkinson's, NPH (particuarly when found & treated early) has a successful treatment.  When shunted early, damage/impairment can be minimal.  However, some damage/impairment can be permanent.  The downcast gaze, shuffling gate and other gait issues are all signs of NPH.  It is still possible for someone with NPH to live a long life after being shunted.

As always, we welcome those adjusting to life with NPH, as well as family members, caregivers & friends at our monthly meetings, as well as connecting with us through the blog and email.

Our next meeting will be November 16th, from 12:45 pm to 3:00 pm in the Casey Conference Room at Swedish Medical Center's Cherry Hill Campus (17th & Jefferson, Seattle).