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).

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.

OCTOBER MEETING--REMINDER

OCTOBER MEETING--REMINDER

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.

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. 

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.

HOW FRUSTRATING!!

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!

September Meeting

September Meeting 

September's meeting was great!  We were small and had hoped that some new faces would come, but they didn't.  We still had a great meeting.  We had a conference call with a member on the east coast, which is always nice.

Among the things we talked about was how everyone has been doing and some topical news items, as they relate to hydrocephalus.  So many associate hydrocephalus only with spina bifida or as a neural tube defect on its own.  There are many causes and it can be acquired at any age.  We are, as far as I can find, the only hydrocephalus support group in Western Washington that offers moral support and information to families, friends, caregivers and those OF ALL AGES living with the condition.  The adult populations get left out, most of the time.

I notice that there is another big push for those research dollars, rather than for advocacy.  If only some of those expressing an interest in research would advocate for living the best life possible, rather than trying to 'fix' us.  There is a place for research, but not at the expense of those who DO live with the condition daily.  For some that is more of struggle than for others, but as we are always saying, every case is unique. It is a real shame that we're still seeing medical professionals giving new parents the old doom and gloom predictions for the unborn, advocating for termination, rather than focusing on the positive.  There is no way to know what potential the unborn with hydrocephalus have before birth.  None.  If someone looked at my brain scans, they might think that I was at death's door.  Yet, I'm not, far from it.  I'm very much a functioning person with lots of potential left in a very full life.  I'm not saying that the road has been easy, it hasn't, but the challenges have worth overcoming.

My mother was told all sorts of horror stories about how my life would be.  She was encouraged to turn me over to the state and "forget (she) ever had a child (me)."  Like that would ever have happened!  She was threatened with being denied access to me in the hospital when she went to the hospital's library to find out what she could about my condition.  She was also threatened with being denied access to me because she was (gasp) holding other babies in the nursery.  Back in 1961 they didn't appreciate the importance of holding infants.  It was also 'suggested' that she not visit me so much in the hospital, because I cried when she left.  Thank goodness I was doing something normal!!

My mother was told I would be a vegetable and die by the time I was 13 yrs old.  Left in the care of the state, that prognosis would probably have been the case.  I recently celebrated my 52nd birthday.  I drive, I cook and shop for the family.  I'm far from being that vegetable that they predicted I would be and I'm living a very full and active life.  Everyone with hydro that I've met has overcome those stereotypes and is living the best life they can, for them.

I was reading where someone posted that there has been no significant improvement on the shunt in the last fifty years.  So untrue!  There have been MANY improvements.  We've gone from being manually drained (over draining was always a possibility with this method) to having programmable shunts that make invasive surgeries less common.  Not eliminating them, but greatly reducing the need for them.  There are cases of hydrocephalus that can be diagnosed before birth and in some cases, shunt surgery can be done before birth, also greatly reducing brain damage possibilities.  But again, we don't know for sure what areas of the brain are effected or to what degree that will dictate someone's potential, until they are born and be allowed to develop into who they are.

My original shunt(s) were primative by today's standards, but after I was 2 yrs old I went 13 years without a shunt surgery, or surgery of any kind.  After my revision in 1977 (which I found out later was unnecessary) I went 6 years without a shunt surgery.  In 1983 I had a staph infection in the tubing, probably caused by an unrelated, elective surgery I had in 1982.  In 1983 I had the infected tubing removed and haven't had any tubing for over 30 years.  I also haven't had a hydrocephalus related surgery in that time.  I'm not saying that is the case for everyone, but having a surgery every 18 mths isn't everyone's story either.  Again, every case is unique.

I realize that without research and the efforts of many scientists, the improvements on the shunt wouldn't have happened.  I also agree that research is needed.  However, the objection I have is to the idea that we need to be 'fixed' and can't live productive, full lives (whatever that is to each person) without that 'cure'.  There are so many causes that a one-size-fits-all 'cure' is truly impossible.  What IS possible is lessening the need for shunts, appreciating the real dangers in concussive incidents at any age, finding cures for tumors that impact the flow of csf (cerebral spinal fluid) and changing the mindset that no damage can happen to the brain when it is shaken or kicked.  We never hear people, like Dr. Oz, or The Doctors talking about what a neural tube defect actually IS, or the importance of women of child bearing age knowing their folic acid levels and how that can play a significant role in prevention of both spina bifida and hydrocephalus.  What we DO hear is how bad fortified flours are, when one of the things that fortified flours were created for was to increase the folic acid in foods because so many women were deficiant in it.  The cases of hydroephalus and spina bifida DID go down.  The neural tube is developed before most women know they are pregnant, so increasing consumption of foods high in folic acid after finding out they are pregnant is too late.

As part of National Hydrocephalus Awareness Month, I spent a lot of time sending out a number of emails to local public relations firms, hoping that some of them would have some clients interested in doing some tie-in advertising with us.  One responded, but said that his clients are Internet and social media based, as well as being based in places other than Washington state.  So short sighted!  A tie in with social media would be great for both them and us.  Where they are based shouldn't really be of concern, since we are talking about an online presence, plus tapping into the potential of reaching many more through social media!  I just keep thinking of all those folks thinking that they are alone in their hydrocephalus experience, when that is SO not the case.

Two of our members are going to be taking a video production class series.  I'm hoping that this could be another area of outreach that we could utilize.  My mind is racing with ideas.  I'm already thinking about next September and efforts to increase our visibility for National Hydrocephalus Awareness Month 2014.  I'm also working on the Brain Awareness Open House event for 2014.

Look forward to seeing more new faces at the October meeting.