Thursday, October 31, 2013

New Article About Normal Pressure Hydrocephalus (NPH)


I just got an email, via MedLine, that was published on (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).

Sunday, October 20, 2013

October Meeting Update

The October meeting was very productive.  We had a conference call with a member who was out of state, which was great.  We discussed several topics.

I am still trying to get more literature and 'stuff' for our booth/display at the UW's Brain Awareness Open House event, tentatively scheduled for early March, 2014.  I want to include information on concussions and brain injury.  Still waiting for literature from HA.

We are going to be making informational packets to some of the first responders in the area, since many aren't aware of acquired hydrocephalus.  I'd also like to see us work with some other groups to create an informational resource/event that would be an educational effort.  As always, we are open to anyone who wants to find out about, or ask questions about hydrocephalus.  Generally, so many don't know about any area of hydrocephalus other than congenital or newborn brain bleed cases, or what it means to LIVE with hydrocephalus.

We also talked about the current focus on concussions & CTE.  There is so much more to find out in the coming years with this and how it impacts kids of today when they become older.  They may not see the results of concussions/closed head injury until their 40's or 50's, which most kids aren't thinking about.  It would also be interesting to see just how acquired hydrocephalus could play a part in some cases.  It isn't just about the encephalopathy (sp)--CTE--it is about countless other aspects not being talked about, like brain bruising and swelling of the brain after being knocked around into the sharp bone of the inner skull.

The brain IS precious cargo.

Tuesday, October 15, 2013



October 19th (Saturday) will be this month's meeting.  As always, 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).  Anyone with an interest or questions about hydrocephalus is welcome to attend.  We welcome drop ins & kids.  We look forward to seeing new & familiar faces.

Wednesday, October 9, 2013

FRONTLINE: CTE/Concussion Issue 8/8/13

FRONTLINE:  CTE/Concussion Issue
The Brain Is Precious Cargo

What an interesting piece!  While the NFL, and football, has been the main focus in the media, CTE & the concussion issue applies to so many areas of life and sports.  Denial isn't, and has never been, the way to look at things that are unpleasant or that mean change.  Change is part of life.

"The brain is precious cargo" was a quote that resonated with me.  I've always felt that way, but then, I have had a lifelong awareness of my brain, and that of others, that wasn't like most people's.  That awareness comes from a life of having to be hyper aware of my brain, it isn't something most people give a second thought to.  That is why I don't think that a lot of parents, coaches and kids appreciate the potential damage that can be caused by these sports that have become such a part of communities--like football, soccer, etc.  Even if a soccer player 'heads' the ball on the 'sweet spot' of the head, it is known to cause temporary (& potentially permanent) brain damage.

Those doctors who commit themselves to brain research are great heroes.  Everything about the brain is unique and facinating, IMO.  I'm not talking about finding a 'cure' for hydrocephalus research, I'm talking about finding out about how the brain works and how damaged brains got that way.  It is pretty obvious that the 'cure' here is simply not putting the brain into these situations, although we all know that there are going to be those who are insistant upon doing it, no matter what.  I don't think that, as I said before, prior to the damage that they would truly appreciate what was being told to them by those who have been through it first hand, or as a parent, child or spouse.

These two hours just scratched the surface of this story.  There is SO much more to be discovered in the future through research, like Dr. Ann McKee & the Boston University CTE Center are doing.  Personally, I've thought seriously about leaving my brain and spine to science so they can find out more about my type of hydrocephalus.  Wish I could be there for the results!

I was also taken by the mistaken diagnosis of Alzheimer's and Parkinson's with CTE, which has also been the case for Normal Pressure Hydrocephalus (NPH).  NPH can be treated successfully if there is an early diagnosis. 

Tuesday, October 8, 2013

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.

Thursday, October 3, 2013


September came and went with hardly a word spoken about National Hydrocephalus Awareness Month.  Frankly, little was said about National Alzheimers Awareness Month either.  Now we are into October and you can't swing a cat (as they say) without hitting on something pink or entire panels of talk shows talking about breast cancer.  Even there, men with breast cancer is barely mentioned.  Although I was pleasantly surprised to hear a local reporter talking about male breast cancer screening at the Mammography mobile.

Back to hydrocephalus, it is a shame that so little is said about it when the subject has so many angles to explore.  Tying it in with Alzheimers awareness, brain injury awareness, etc.  Talking about how it can be acquired at ANY age.  Bringing up NPH (Normal Pressure Hydrocephalus) and the 5-15% of cases of NPH that are first mistakenly thought to be Alzheimers or Parkinsons.  Found early, NPH is SO treatable!

I was hoping that some of actor Boris Kojo's interviews the last month or so would have included a discussion (or mention) of hydrocephalus, since it hits close to home for him.  But nothing.  It also would have been a great time for Shonda Rhimes (sp) of Grey's Anatomy to mention it, since the character of Zola has hydrocephalus.  I LOVE the fact that Zola is shown as an active child who happens to have hydrocephalus, not as a child who is always having surgeries & fulfilling that doom & gloom picture that so many paint of those of us living with hydrocephalus.

I was really hoping that some of the former football players and others with high profiles might do some PSAs for National Hydrocephalus Awareness Month, but nothing.

I'm waiting for the pamphlets and fact sheets to come in so we can put together the packets for the Seattle Police Dept.  I want to get as many of those packets out to the members of the police force so that they, as first responders, have a bit more knowledge about hydrocephalus, its causes and head injuries in general.  I'd also like to see some tie-ins with our group in raising awareness in Washington state, particularly Western Washington.  It really is important for those of us in the brain oriented community (be it hydrocephalus, brain injury, Alzheimers, Parkinsons, etc.) to come together & be part of the public discussion on brain injury, TBIs in terms of prevention, not just focusing on research and 'cures'.

It really is frightening to look at how much research, in general, is being halted because of the Government Shutdown.  Not to mention the support services that are suspended because of this.  It isn't just those with hydrocephalus living with a sense of isolation and a need to reach out to others living with the same condition.  Potentially, there are literally lives hanging in the balance because of this.  It isn't just adult lives either.  We know the importance of nutrition and brain health, yet programs like WIC (Women Infants & Children) is having to deny access to food and services (including education) to the most vulnerable among us--children.  No child left behind?!  Nutritional impoverishment can have lifelong consequences that leave them VERY far behind.  Of course, our focus is on children with already compromised brain health.

What a month!