ANOTHER DIAGNOSIS OF CTE AFTER EX-NFL PLAYER SUICIDE--SO SAD

Just saw the news online about Adrian Robinson, Jr.'s post-mortem diagnosis of CTE at only 25 yrs old!  So sad.  So avoidable.  Such a tragedy.

With every article we see the same general information.  Players who played hurt and decisionmakers who failed to take concussions seriously.

I'm sure that this will be a topic of discussion at the meeting on Saturday.

FOX NEWS (CHANNEL 11/13, SEATTLE) AIRING BRAIN FEATURE @ 10 PM ON 10/7/15

I saw the Fox News piece on last night's news and they spoke about a special they will be airing tonight about the inner workings of the brain.  If their previous work is any indication, this should be excellent.

Last night they had a teaser where they interviewed two prominant docs from the University of Washington--one was neurosurgeon Richard Ellenbogen and the other was a sports medicine specialist.

A big part of the reason for the special and the smaller segments devoted to brain injury is because Washington state has already had something like four TBIs with high school football players.  As much as the high school football gets the attention, other sports (LaCrosse, soccer, softball, etc.) are also impacted.  Statistically, more brain injuries occur from bicycle accidents than sports.

There is also the added attention to the Lystadt Law, which requires any high school coaches/trainers to remove a kid from play if a concussion is even suspected.  Kids aren't allowed back in the game until they have been evaluated by a medical professional.  I believe they said that now all states have some form of the Lystadt Law in place to protect kids in sports.

I'm looking forward to watching tonight.

'Inside The Brain' Viewing

'Inside The Brain' can be viewed on YouTube.  It is well worth the time to watch.  Lots of really great information about the brain & what research is being done. 

'Inside The Brain'

I watched most of 'Inside The Brain' on KOMO TV (Channel 4, Seattle) last night.  Very interesting.  It was produced in conjunction with Seattle Children's Hospital.

They spoke with a couple of the neurosurgeons at Children's, one of them is doing extensive research and development of a safer helmet for sports.  It was hard for me to watch even the dummy head being slammed, but well worth the emotional discomfort.

They also discussed a variety of areas of brain research that was quite interesting.  To think, this is still in the early stages & what will be found out in just the next few years!

Overall, it was time well spent.  Hoping for a follow up in the future.

It also provides a springboard for conversation at this month's meeting on the 19th.

KOMO/4 & CHILDREN'S HOSPITAL, SEATTLE SPECIAL 'INSIDE THE BRAIN'

KOMO/4, Seattle area's ABC affiliate, will be airing a special called 'Inside The Brain' on Sunday evening.  From the previews it looks like a facinating program.  For those unable to watch on channel 4 in the Seattle market, it can be found on KOMO's website.

May 2014 Meeting Summary

This month's meeting was interesting.  We discussed hydrocephalus history and plans to do more research on various aspects of the subject.  The topic brought up the issue of the 'cure' that so many newer parents seem to have an obsession of.  I've brought this up before, along with my views, which are often shared by others with the condition.  It isn't that we are against research into hydrocephalus, just that the idea that we all need to be 'fixed' or that we are all 'suffering' and need some one-size-fits-all approach to ending the condition isn't where we feel all energies need to be trained on.

To see where hydrocephalus, and its treatment, have been and where we are today, it is why we are grateful for the strides that have been made.  I recall one of my neurologists saying that if the math portion of my brain hadn't been damaged by the hydrocephalus, I would have made a good doctor.  However, if I didn't have hydrocephalus, then I wouldn't have the hyper-awareness of my brain, or my interest in how the brain works!  I also wouldn't have any interest in the possible genetic aspect of my hydrocephalus.  As I've said before, if I didn't have this condition (it isn't a disease) I would think of my brain the way most people think of their big toe.  I wouldn't think of it, unless I injured it or had on a tight fitting pair of shoes.

I also remember being told, by a new parent to the hydrocephalus experience, that he couldn't understand why "you people get so upset about research".  Actually, he also said that I was against research and implied (many times) that we adults with hydrocephalus are incapable of understanding the complex issues around the condition.  As though those of us, adults, who have had a lifetime of experience in dealing with various aspects of the condition don't know what we are talking about!!  Then again, he and his wife said that they didn't need to hear from parents with over fifty years of experience of having 'kids' with hydrocephalus.

Exploring various aspects of hydrocephalus history is going to be interesting.  I'm looking forward to it.

Another subject, which I want to bring up at next month's meeting, is this discussion of Ms. Clinton's head injury several months ago and Karl Rove's opinions about it.  He seems to conveniently forget that Ronald Reagan had a head injury after falling from a horse.  He also was in the early stages of Alzheimer's when in office.  No one said 'boo' about that then.  He wasn't saying that the President had no business being in office.  Sorry, to those who don't believe that President Reagan didn't have Alzheimer's until after he left the White House, but the medical profession has stated in more than one source, that people with Alzheimer's have the disease for a decade or more prior to definitive diagnosis.  That would have put President Reagan smack in the middle of his time in office.  There are those who also question whether the fall from the horse and subsequent head injury didn't leave him with possible hydrocephalus, not as a result of the Alzheimer's, but because of the fall.

The idea that because someone has had a head injury that they are suddenly incapable of decision making is not based on fact.  People go on after head injury to have full lives, with the ability to make decisions remaining in tact.  In fact, most people with head injuries go on to drive, raise families and enjoy their lives without having their mental health or abilities being in question.

The 'Knockout Game'

 

 

 

THE 'KNOCKOUT GAME'

 

 

How disturbing is this?!  Obviously, those participating in this 'game' haven't got a clue about the potential damage they can do with this.  Today's national news addressed a few of the deaths that were caused by these careless 'kids' who seem to think that it is 'fun' to knock someone out on the street.

 

As usual, I look at it from the hydrocephalus perspective.  This is one of the many ways that someone can acquire hydrocephalus--through a traumatic brain injury (TBI).  Hitting one's head against a sidewalk, curb or wall can/does cause such injuries.  I'm sure that this will be a subject of conversation at the December meeting of the Hydrocephalus Support Group, Inc.

 

I have no idea how this started or how to stop it.  I guess that until something happens to those who think this is a game, entertainment or funny it will continue.  As I've said before, someone who isn't hyper-aware of their brain isn't going to appreciate that precious cargo the same way as those of us who are living their lives very aware of their brain.  While I'm concerned about this in general, specifically, some stranger who isn't aware that someone already has a condition, like hydrocephalus or a TBI already, could SO easily prey on them, causing irreparable damage, or even death.  From everything I've seen/heard about this 'game', it is inflicted on complete strangers, so it is quite possible that someone with a pre-existing brain issue could be killed by these kids 'having fun'.

 

The November meeting was very productive.  We discussed ways of increasing our presence online and in Western Washington.  I'm looking at ways that we can get involved in more community events, as well as increasing the awareness of the condition with the general public, as well as first responders.

 

Also wanted to say Thank You to NINDS for sending us the newest hydrocephalus pamphlets to include in our media kits.  Looking forward to the Hydrocephalus Association's (HA) contribution of literature to include in the kits.

 

I'm also hoping that Seattle's new Mayor and his staff will include hydrocephalus awareness throughout the year, but especially during September (Hydrocephalus Awareness Month).

 

The Allen Institute, here in Seattle, is going to be expanding its brain research to covering CTE, which is great.  Founded by Microsoft's Paul Allen, the Institute has already done the brain mapping, which is available online.

 

I'll be posting the 2014 Schedule in the coming weeks.

 



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.