May Meeting Discussion

The May meeting was interesting. We are going to be discussing more ideas for the 2015 Hydrocephalus Awareness Month in September, at the June meeting. We briefly talked about joining forces with some other groups, with brain issue interests/focus, to come up with some ideas for increasing visibility of the month. Hard to believe that September is only months away! Kim brought the Hydrocephalus Doll (Medikin) back from Olympia, along with a new wardrobe and a stroller. It is now a lot easier to take the doll from place to place. We had another double take in the elevator on the way to the meeting--someone thinking that the doll was a real baby, then realizing that it wasn't. That never gets old! I'll be looking for more clothing & 'shoes' for the doll in the coming weeks at thrift stores. The health fair Kim took the doll to was a success. We, as always, talked about possible ways to generate more interest in the meetings. It would be great to get our meeting numbers up again. I'm always encouraging people with an interest in brain issues, specifically hydrocephalus, to attend. So are the other members. We were also talking about re-introducing the summer picnic. We used to have an annual summer picnic, but for a variety of reasons, that fell by the wayside. We had donations made by some local stores and rented space in a couple of local parks. We always tried reserving a picnic shelter, so we had cooking space, picnic tables and running water. with more participation, it would be nice to bring the picnic back. I have a CT and neurosurgeon appt. scheduled for June.

Upcoming May Meeting

Hard to believe that we are already looking at the fifth meeting of the year! May 16th is the next meeting of the Hydrocephalus Support Group, Inc. As usual, we will be meeting in the Casey Room at Swedish Hospital's Cherry Hill campus (17th & E. Jefferson, Seattle) from 1:00 pm to 3:00 pm. We welcome anyone with an interest in hydrocephalus, no reservations needed.

Update To 'Here We Go Again Part 2'

While I'm glad to see attorney Mosley taking a strong stand against what happened, the nitty gritty details of what happened still haven't been revealed; they need to be. It is nice to see that someone has decided to hold those involved accountable, but it goes much further than that. What happened in Baltimore isn't an 'isolated incident' and the WHOLE problem has to be dealt with. That means including training for police and other, non-medical, first responders who often arrive before EMTs. There also needs to be a lot more education about what happens with traumatic head injury (TBI) after an accident/incident. The brain doesn't distinguish between the foot of a cop or the foot of some random person on the street. Just as it doesn't make distinction between someone on or off duty or their rank. Aiming for the head or spine areas is simply not acceptable. I still can't believe that someone couldn't tell the difference between a seizure and intentional harm to themselves. A seizure can last only seconds. If someone goes into status (having numerous seizures, one after the other) they will, at best have brain damage as a result of not having medical intervention, or they will die. Ignoring it won't make it better or improve the person's situation. As much as the officers are being held accountable, TPTB need to take a serious look at what their people know and DON'T know, then change it so that they DO have the information and can do the right thing.

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.

April Meeting

The April meeting was very productive.  It was great having one of our out of state members being part of a conference call for part of the meeting.  Always a lot of great discussion and input.

I brought the hydrocephalus doll along so Kim & her mother could take it to a health fair today in the Lacey/Olympia area.  As always, there were a few second looks & a comment or two.  One said that it was a cute baby!  Another double take was from one of the neuro staff.  Fingers crossed that the health fair goes well.

At least I'm not alone in taking issue with the Durst letter and comment about having "full blown hydrocephalus".  In some of the footage I saw of him, it is quite possible he has NPH, but that has no bearing on his mental health as it relates to the possibility of him being a murderer and using it as part of some 'insanity' defense.  We all agreed that the implication is a very negative one that needs to be cleared up.

We talked a bit about issues with doctors, GPs as well as specialists.  A common topic for us.

I brought up a speaker I saw last Friday.  My mother & I went to a lecture at one of the Assisted Living facilities in town.  The speaker was a neurologist who specializes in tremors.  The lecture was quite interesting.  It would be great if we could find a way to have him speak at a meeting or at a symposium sometime.  The other nice thing was seeing how educated many of the attendees were on brain health!

April Meeting/Durst "I Have Full Blown Hydrocephalus"

Looking forward to the April meeting on Saturday, April 18th, from 1:00 pm to 3:00 pm in the Casey Room at Swedish Hospital's Cherry Hill campus (17th & E. Jefferson, Seattle).

One topic we will be discussing will be this week's 'revelation' about Robert Durst having (in his words) "...full blown hydrocephalus" Whether his defense team is going to try spinning this as part of an insanity defense isn't clear.  I'm hoping that isn't the case, since hydrocephalus isn't relevant to any aspect of murdering people.  Insanity and hydrocephalus aren't related.  Hydrocephalus isn't 'insanity' and what a great disservice to the hydrocephalus community if they are even entertaining such a notion.

I will also be bringing along the hydrocephalus doll this month.  It will be used the following week at a health fair in the Olympia area.