Here We Go Again...Part 2

I will start by saying that I DO support the police and appreciate the difficult job they have. However, last night's news only proves that there is a real problem with training, in general. The job is about much more than target shooting. It is about dealing with a WHOLE community. That community includes those who have a variety of impairments. Head injuries and the post-trauma issues around that, especially with a closed head/spine injury, shouldn't be an unknown to ANY first responder. The more that comes out about what happened after Freddy Gray was injured, however that happened, the more I see a traumatic head/spine injury (TBI) with neuro complications. The flow of the cerebral spinal fluid impacts the pressure on the brain and anything that impacts that flow can cause pressure to build up. That would cause incredible pain and for someone with no experience with it, they wouldn't be able to articulate what was going on. In addition, as I said before, not imobilizing the neck and spine would have only increased the injury, if there was an internal decapitation going on. There is a reason that EMTs secure a patient's neck and spine before transporting them to the ER. Those officers didn't call for appropriate assistance, even when the victim was asking for that assistance. It didn't help Mr. Gray to NOT secure him in the van in the first place. Now we are hearing that a second person in the van, along with the driver, heard banging and noises coming from where Mr. Gray was seated. They didn't see him and it only lasted "a few seconds". With ANY TBI, there is a high risk of the patient having a grand mal seizure. That wouldn't last minutes, necessarily, but seconds. It also speaks to the severity of Mr. Gray's injury. From what has been reported, the assumption was that he (Mr. Gray) was doing this on purpose. That he was trying to hurt himself. A seizure, of any type (there are over 100 types) is involuntary. It is a short circuiting of the brain and should be a sign to go to the nearest ER, rather than dragging the patient/victim out of the van and putting them in restraints. All of that could easily have contributed to furthering Mr. Gray's injuries. I realize that it is popular right now blame police for excessive force. IMO, if all of this is accurate, it is all about lack of training and awareness of head injury, as well as a lack of common sense. What also concerns me is the report that stated that while the DA will look at the final report on what happened to Mr. Gray, none of the facts will be made public. All that leaves is speculation and keeps the 'exessive force' issue for the public to consider. It certainly doesn't clear anything up or inform the public about what probably DID happen.

Here We Go Again...

Here we go again, with first responders having no clue about spinal cord or head injuries.  The Baltimore PD now faces hot water, as they should, for the internal decapitation death of one of their citizens because of a total disregard or awareness of such a condition.  Frankly, even EMTs have a difficult time determining an internal decapitation, but the fact is, nothing was done to prevent such an injury and looking at the video, the officers on the scene don't seem to be aware of the possibility of such an injury.

I appreciate the difficulty of their job, but first responders need to have a healthy respect for the spine and brain.  They need to appreciate that injuries to these areas are potentially fatal or could be life altering.  Prevention is the only way to stop the kinds of life altering injuries that take someone from being able to pursue their dreams to someone who's dreams have to be altered to fit a 'new normal' that simply didn't have to happen.

I've seen accounts of two incidents in the last week alone where severe, closed head injury (TBI) has been ignored and first responders have only gone by someone's actions on the surface.  The man who was walking down a Texas highway naked (except for his cowboy hat) had been in a car accident.  It isn't unusual for someone with a traumatic brain injury, particularly a closed head injury, to do things like strip off their clothes.  Or, as apparently happened with the young man in Baltimore, he became agressive.  Both are not uncommon responses to a head injury.  Taking these actions as conscious decisions on the part of the victim(s) only shows how little these folks have, in terms of training.  Piling on top of someone with such an injury can also just make the injury worse.

Here We Go Again!

Let me begin by saying that I appreciate the dangers and challenges of the job(s) of first responders.  I understand that they are in a high stress job with lots of variables and that every situation presented to them has challenges, but that IS the job.

Just saw the video of the CHP officer using a citizen's head as a punching bag.  This seems to be the go-to place for officers to target, with little or no regard for the potential damage they can inflict.  Most probably don't even KNOW that they can be inflicting trauma to the brain that can cause many injuries, hydrocephalus being one of the many.  The victim isn't always capable of self-diagnosis in these situations.  Someone with no history of hydrocephalus wouldn't have the words to convey to a doctor anyway.

Apparently, this particular victim WAS taken to hospital and evaluated, medically and mentally.  I know of a couple local incidents where that wasn't the case.  In one instance the same officers who did the kicking about the head also thought he could "walk it off" and let him go home after declining medical assistance.  The police department rep I spoke with was obviously shocked when I told him that the victim could have had a brain bleed and been unaware of it, which could have led to brain damage or death.  He could have gone home, crawled into bed and never awoke the next morning.

I don't particularly care why the officer felt that this was necessary.  The point is, the risk is there and it is too great to justify in ANY situation I've seen documented.  The potential damage isn't the same as a bruised ego or a sprained ankle.

I also realize that most people aren't aware that hydrocephalus can be acquired at any age.  It isn't 'just' a birth defect.  It can be caused by any assault on the brain--intentional or not.  It can be caused by accident, brain tumor, concussive event(s), a brain bleed or anything that alters the production or flow of the cerebral spinal fluid surrounding the brain and spinal cord.  Slamming someone's head into sidewalks, highways or a building's exterior wall all put someone else's life at risk, somehow I don't see that as being justified in any of the situations I've seen documented. None.

DISCUSSION(S) FROM JUNE 2014 MEETING

First, what a chore to get to the meeting!  Several major roads were closed, causing HUGE traffic tie-ups.  Combine that with the Rock N Roll Marathon/Half Marathon and construction projects--it was one HUGE mess!  I was originally concerned about finding a new route from the train station to the hospital, but that turned out to be minor!  My trip was nothing compared to a member (I was going to pick up at the train station), who ended up having to take the bus.  That trip took over 90 minutes!  It usually takes less than ten to go from the train to the hospital.

I did, inadvertently, find the new way to the hospital from Pioneer Square, which takes less than five minutes!  We went back that way, when I dropped her off at the train for the return trip.  It was still a mess at the Pike Place Market & the heart of downtown, but finally got home.

The meeting itself was great, as usual.  We had the regulars and a conference call with a member from the east coast.  Always love having those conference calls and including folks who otherwise wouldn't be able to attend.

We discussed progressive issues we each have, some hydrocephalus related, some not.  Part of it just comes with age, unfortunately.  At least SOMETHING is normal about us! :)  One of us is having physical therapy and another has just finished his sessions of occupational therapy.  I will only speak to mine right now.  My shoulder feels better than it has in years.  I have soft tissue damage from a car accident a few years ago that is finally getting dealt with now that I have health insurance that covers such things.  This does tie in with my hydrocephalus, since my old shunt scar/pathway has been a literal pain for the last 31 years, ever since the shunt tubing was removed in 1983.  In addition to the shoulder issue, this will also be able to be examined thoroughly.

Next on my medical agenda (other than losing more weight) is to get back to having a neuro team and really digging deep into my hydrocephalus.  I want to do some serious examination and research into my case.  As we always remind each other, every case is unique.

I've been diagnosed with scoleosis, which I guess I always had.  I've been told that as long as I remain active and mobile it shouldn't be more of a problem than it has been for the last 50+ years.  I was never told about scoleosis, ever, until about a year ago.  All these little boxes of surprises...

Back to the meeting, we discussed history of hydrocephalus treatment a bit more.  One member reminded us that his first neurosurgeon was very involved in early lobotomies, which shocked him.  Looking back at how hydrocephalus was treated before the 1950's and looking at today's treatments, it makes us even more grateful for what we have in our lives now.  It also drives home the concept of making lemonade out of lemons.  We have very full, rewarding lives!  Frankly, we all agreed that we appreciate what we have in a very special way.

It also brings up the whole concept of a one-size-fits-all 'cure' that so many new parents, new to hydrocephalus, seem to be fixated on.  They seem to think that their children's lives will be forever horrible and without joy, success or fulfillment.  Nothing could be further from the truth!  Shame on the medical professionals who assume that because they detect hydrocephalus that a fetus' life is over before it has begun.  There is no way of knowing what that child will achieve.  Assuming can deprive everyone of the benefits that every life has to offer.  We are much more than our brain scans.

A few years ago a couple, new to the hydrocephalus experience, proceeded to tell me what my life was like and what I could/couldn't do in life.  The husband even said "I don't get you people, you are so against research."  We aren't against research into hydrocephalus, we tend to be against this idea that we need to be 'fixed' and that our lives are horrible without their 'cure'.  Hydrocephalus is treatable, manageable and liveable.  This couple routinely presumes to make these grand pronouncements about what hydrocephalus is like, when it isn't anything like what they are saying!  The majority of us 'dinosauers' had parents who refused to have us being defined as cripples or a homogenous group.  Hydrocephalus isn't WHO we are, but it is a part of us.

As far as a 'cure', the only real universal 'cure' is prevention.  Even then, it isn't going to ever be completely eliminated.  Instead of looking for the hydrocephalus 'cure', they need to look at preemies, brain bleeds, preventing accidents (particularly with teens and young adults), find answers to international concerns rather than sending healthy men and women into war zones where they can be damaged in so many ways--including TBIs/brain injury.

We talked about the fact that some parents get their kids involved in contact sports at a very early age, when their necks and brain aren't close to being mature enough to handle the blows.  Even adult brains can't handle everything that contact sports throws at them.  Concussions need to be taken more seriously.  It is getting better, but awareness and appreciation of them have a long way to go.  Heading balls in soccer, for example, is not good, it still damages the brain, even if they hit the sweet spot.  There is nothing funny or lighthearted about being beaned in baseball either.  We still have coaches and parents who's theory is 'walk it off', 'shake it off' and 'don't be a wuss'.  It isn't being a wuss to take the brain and potential damage of it seriously.

Research into causes and prevention of acquired hydrocephalus, as well as congenital hydrocephalus is important.  But it isn't as glamorous or 'sexy' as talking about a 'cure' and 'the evils of the shunt'.  I'm grateful for the shunt and where management of my condition has come.  There are even procedures that can be done before birth with some congenital cases.

We want to also get more involvement in the community with the group.  Awareness is great, but we want to reach more families and adults living with the condition.

THOUGHTS & PRAYERS TO OSO LANDSLIDE SURVIVORS

Just wanted to add our heartfelt thoughts and prayers to the survivors of the Oso, Washington landslide.   It has been such a shock to everyone.

I also wanted to add our group's thanks to the first responders and the subsequent folks who are helping to search for survivors and clean up after this horrific disaster.

My mother's family is from a small town in Iowa, about the same size as Oso.  I totally understand the connections of the community members.