Summary of September Meeting

As usual, we were a small meeting but got a lot accomplished.  We discussed ways to increase our visibility during the rest of National Hydrocephalus Awareness Month.  There are so many good ideas, but they take more money and prep than we have.

We also discussed shunts and the history of shunts.  Actually, the history is very interesting and only makes us appreciate even more the time(s) we were born in.  As 'barbaric' as some feel today's shunts are, they were much more so hundreds of years ago.  Today's doctors have scans and imaging that weren't available until the last 40 yrs or so.  Previous to that surgeons were working 'blind'.  Prior to those days, there were all sorts of methods tried for managing hydrocephalus that WERE barbaric and risky.

We talked about the different generations of hydro survivors.  Those of us born before the shunts developed by people like Roald Dahl (yes, the author & former husband of Patricia Neal), in the 1950's being 'first generation'.  Then those who were born after the CT scan became an available tool being second generation, those born after the MRI and now those born after the programmable shunt.
As we've discovered the evolution of hydro treatment and management, we've really come to appreciate the research and development that has taken us this far.  It isn't perfect, but nothing is.  It gives families and patients options though, as well as neurosurgeons.  There is far less over draining and under draining.  We can recline and not have to worry about whether the shunt is going to continue working or not.

I've said this before, but I would love to know what happened to the research being done on using a patient's own DNA to grow their own shunt tubing in a lab, potentially reducing the opportunity of infection or rejection of a synthetic tube.  I saw a paper on it published in the 1970's, but nothing more.

We also discussed Zika and some information that was talked about on Doctor Oz.  While so much is NOT known about the long range ramifications of the disease, it has been around since the 1940's!  It has similarities to Denge Fever.  I'm interested in how it might be a cause of hydrocephalus.  That is a whole topic unto itself!

Looking forward to October's meeting.  Hope to see faces, new and old there.  As always, it will be on the third Saturday, from 12:45 pm to 3 pm in the Casey Conference Rm at Swedish Hospital's Cherry Hill campus (16th & E. Jefferson, Seattle).  We offer moral support and information to families, friends, caregivers and those (of all ages) living with the condition of hydrocephalus.  We welcome drop ins and those with an interest in brain issues, particularly hydrocephalus.

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.

December Meeting

Looking forward to the December meeting on the 20th.  As usual, we will be meeting 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 & kids are welcome.

Starting in January, our meeting time will be from 1:00 pm to 3:00 pm on the third Saturday of each month, in the same conference room. 

HAPPY THANKSGIVING!

Hope everyone had a wonderful Thanksgiving.  We did, despite having the oven die on us even before getting started!  Had to run out and buy a new countertop oven.  Everything turned out fine in the end.

I love this time of year!  Christmas is next.

Hope everyone has a wonderful holiday season and a happy 2015.

JUNE MEETING

Hard to believe that we are at the halfway point of 2014!  This Saturday will be the June meeting.  As always, we will be meeting in the Casey Conference Room from 12:45 pm to 3:00 pm.  Anyone with an interest in hydrocephalus is welcome to attend.  Drop ins and kids are welcome.

We serve families, friends, caregivers and those (of all ages) living with the condition of hydrocephalus.  Hydrocephalus can impact anyone, at any age--be it through accident, a congenital situation or spontaneously (Normal Pressure Hydrocephalus--NPH).  Unfortunately, the latter is often misdiagnosed as Alzheimer's, Parkinson's or some other form of dimentia before being diagnosed as NPH.  NPH is very treatable and manageable, especially if found early.

I'm sure that we will discuss the stresses on family & friends that are caregivers, given the loss of Casey Kasem and the high profile situation surrounding his final months.  While we don't often talk about elder abuse, or abuse of the disabled in general, that may also be a point of discussion.  Many of our members are very functional and don't require constant care, but we've all known folks with hydrocephalus who required constant care for some period of time.  It can take a toll on ANY caregiver, especially family and friends.  Respite care and sharing the responsibility can be difficult for some families.

Those of us who are highly functioning now, always have it in the back of our minds that we may be the ones needing constant care.  Spouses have a tendency to lose themselves in caregiving, taking on a very different role than spouse.

Most families will look at the Kasem's situation and think that could never happen to them, but it is all too common.  Most families don't garner the kind of publicity/media attention that Mr. Kasem or his family did.

As always, we look forward to seeing familiar faces, as well as new ones at the meeting.

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.

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!

 

 



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).

FRONTLINE: The Concussion Issue

FRONTLINE:  THE CONCUSSION ISSUE

I'm going to be watching Frontline tonight with great interest.  The concussion issue is a real concern when it comes to acquired brain damage, particularly as it relates to hydrocephalus.  I realize that everything isn't hydrocephalus related, but it IS one of the conditions that can be acquired by head trauma (TBI).  From the interviews about this particular episode that I've seen so far, there should be an interest in seeing if there is a connection, especially since two of the conditions that are frequently mentioned in conjunction with this issue are Alzheimer's and Parkinson's--which 5-15% of the time are the first diagnosis that someone with NPH (Normal Pressure Hydrocephalus) receive, possibly delaying prompt treatment, which is critical to a patient having the best outcome possible.

I do think that it is over-reacting for people to say that this is potentially the end of football.  Denial doesn't address the very real issue of brain damage and permanently altering players' lives so profoundly.  Trying to project that denial onto researchers who have devoted their careers to finding answers to brain issues is incredibly insulting to everyone.  There are always going to be those who, when told of the potential risks, will still jump into the fray.  There are also people who have no experience with brain injury, who honestly, can't appreciate just what that brain damage will cost them.  I've seen people who acquired hydrocephalus as adults, who DO see a big difference between life before their brain injury and life after. I'm not saying that they can't overcome some, or most, of the challenges, or that the fight isn't worth the effort, but it is a life changing experience.

I can't say, from a personal perspective, what it is to go from that before and after experience.  I was born with hydrocephalus and know nothing else.  I didn't have a life before hydrocephalus and after, although I do have the before and after of having my hydrocephalus arrested (not active).  That could change at any time, without notice.  I've had to find a way to not constantly think about it and to live the best life possible.

In talking with a friend yesterday, I posed the question if CTE (what the researchers are calling the football head injury related to concussive events) is, in some way, related to hydrocephalus.  Again, I realize that not everything head injury involves hydrocephalus, but it should still be part of the discussion.  So many unanswered questions!  This is where brain research is vital and interesting.

As I've said before, I'm not against brain research, I'm just not fixated on finding that 'cure' for hydrocephalus.  I'm sure that there is a lot more research and development to do to improve the shunt for the future and that could potentially improve a lot of lives.  Perxonally, I have always been interested in the research into growing one's own shunt, using the patient's own skin cells/dna to grow a shunt that wouldn't be seen by the body as a foreign object.