Happy Thanksgiving!!

Hope that everyone has a Happy Thanksgiving on Thursday.  I'm always thankful to be alive & well.

We got the official notice/invitation to participate in the UW's Brain Awareness Open House for 2015.  It will be held on March 3rd.  I'll be filling out the form shortly.  Looking forward to participating again.

I've already posted the meeting schedule for 2015.

We look forward to seeing everyone at the next meeting, on December 20th, from 12:45 pm to 3:00 pm in the Casey Conference Room.  Hard to believe that it is almost the end of 2014!!

MARCH MEETING--THE HYDROCEPHALUS SUPPORT GROUP, INC

MARCH MEETING, THE HYDROCEPHALUS SUPPORT GROUP

 

 

 

Hard to believe that we are already looking at the March meeting for 2014!  It will be held this Saturday (March 15) from 12:45 pm to 3:00 pm in the Casey Conference Room at Swedish Hospital's Cherry Hill campus (17th & E. Jefferson).

 

 

We will be discussing this month's Brain Awareness event, plans for the 2015 event & our class presentation later this month, as well as what we are doing personally.

 

 

As always, we are looking forward to new faces.  Drop ins & kids are welcome.

 



PLANNING FOR BRAIN AWARENESS EVENT

PLANNING FOR THE BRAIN AWARENESS EVENT IN MARCH

 

 

Plans for our exhibit are underway.  As always, we have the dream list of what we would like to have at the event and the more realistic plan.  This year we have a couple of opportunities to have some giveaway items and some personal appearances.  Unfortunately, both require money.

 

 

My dream is to have our own reusable bags to give away to the kids, as well as 'stuff' to have in the bags that are brain and/or hydrocephalus oriented.  In years past we have had donated bags, which we still might have, but they always promote businesses, without our group name on them.  It would be nice to add that to the offering.

 

 

I just got an email letting me know that one of the personal appearances is possible!  Even if it would be for 1-2 hours of the event, not necessarily the whole event, it would be great to have.  Now the real challenge begins, raising the funds in a short amount of time.

 

 

I've been wanting to have this appearance at the booth for a long time and we are so close to making it happen!!

 

 



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.