National Hydrocephalus Awareness Month--Is Here!

Hard to believe it is already National Hydrocephalus Awareness Month!  We have been talking about an array of possible ways to attract attention the cause this month.  A couple of them involve getting group tickets so we can showcase hydrocephalus.  So we are looking for supporters and those living with hydrocephalus to help in the efforts to raise awareness.

This month's meeting will be on the 19th, from 1-3 pm in the Casey Conference Room at Swedish Hospital's Cherry Hill campus.  Drop ins are welcome, as well as families and anyone with an interest in finding out more about the condition of hydrocephalus.

Many aren't aware that hydrocephalus can be acquired at any age, through numerous causes.  This includes traumatic head injury (TBI), brain tumors, car/bike accident or even spontaneous (normal pressure hydrocephalus) which is often misdiagnosed as Parkinson's or Alzheimer's.  So it isn't limited to congenital hydrocephalus, which is often part of spina bifida.  Because there are so many causes, there can never be a one-size-fits-all 'cure' for the condition (it isn't a disease, although condition & disease are often used interchangeably).

The journey of life with hydrocephalus can be a bumpy one, but the majority of us still see our lives as productive, interesting & welcome the challenges that it provides.

Looking for volunteers for National Hydrocephalus Awareness Month in September

We have a couple of ideas to help in raising awareness of hydrocephalus in September and are looking for volunteers to help out. 

Upcoming August Meeting

The last summer meeting for 2015!  How fast time has gone this summer.

As always, we will be meeting on Saturday, from 1-3 pm in the Casey Conference Room at Swedish Hospital's Cherry Hill campus.  Drop ins are welcome.

This will be our last opportunity to brainstorm ideas for bringing attention to hydrocephalus & the group, especially for September, as well as the rest of the year.  A reminder, September is National Hydrocephalus Awareness Month, so any ways to get the word out about the condition is welcome.

If we can generate enough interest, we may be able to bring back the annual picnic.  In years past we would have a picnic at one of the Seattle parks.  It was a fun activity and a chance for people to meet.

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.

THANK YOU, GREAT WHEEL--Seattle!

The Hydrocephalus Support Group, Inc. would like to thank the Great Wheel, Seattle, for lighting up the ferris wheel for National Hydrocephalus Awareness Month.  We truly appreciate the effort & assistance in bringing public awareness to this issue.  We encourage viewers of our blog to visit The Great Wheel Seattle's Facebook page.

SEPTEMBER: NATIONAL HYDROCEPHALUS AWARENESS MONTH

Sorry I haven't posted for awhile.  Medical stuff going on & lots of conflicting opinions on what to do.  Went to see my neurosurgeon and GP resident disagrees with his findings.  So I'm caught in the middle.  Complicated story that could/should have been so much simpler!

Looking forward to this month's meeting on the 20th.  Hoping to see new & curious faces at this one & in the coming months.  Got started on social media this month & made lots of connections.  I've made our desire to build on our membership known, so hoping that we see some interested folks coming to the meetings, as well as those with their own hydrocephalus experiences to share.

As always, we will be meeting in the Casey Conference Room at Swedish Hospital's Cherry Hill campus from 12:45 pm to 3:00 pm.  The campus is located at 17th & Jefferson on First Hill in Seattle.  We welcome drop ins and kids.  Our focus is on living the best life possible with hydrocephalus.

I haven't yet got confirmation of the date & time of our publicity effort for the month.  I said that it would be great if it would happen the week of the meeting.  When I have confirmation everyone will be hearing about it!

AUGUST MEETING REMINDER

Hard to believe that the August meeting is coming up next Saturday, the 16th.  As always, we will be meeting in the Casey Conference Room at Swedish Hospital's Cherry Hill campus from 12:45 pm to 3:00 pm.  Anyone with an interest in hydrocephalus is welcome to drop by.

Also, hard to believe that next month is already National Hydrocephalus Awareness Month!  Still hoping to get some awareness projects done throughout the month.  But I have some medical 'stuff'--some hydrocephalus related--that I need to deal with.  I'm always hoping, every year, that awareness month gets more attention than it does.

This is also my birthday month!  How quickly they seem to come now, like it or not.

July Meeting Update

We discussed ways to increase awareness of the group, our mission and hydrocephalus in general.  There are some tentative plans in the works for National Hydrocephalus Awareness Month in September, which is fast approaching.

We also have discussed more plans for the more distant future, including the 2015 September awareness month possibilities.

There is a possibility that we could do a Crowd Funding campaign to raise funds for an awareness campaign as well.  Specifics aren't firmed up, but a September campaign would be great--this year or next.

Lots of potential.

SEPTEMBER IS NATIONAL HYDROCEPHALUS AWARENESS MONTH

This month's meeting I want to discuss ideas for  September's National Hydrocephalus Awareness Month.  I've sent out some feelers, but got no responses, for some ideas.  I was hoping to have heard back from some of them, either way.

I would like to see some of our members doing some radio and print interviews, if they are more comfortable doing that.  I had hoped that one of our members, who is a professional writer and reporter, would have been able to write something about living with the condition.

There should be some community events that we could take part in.  I've tried, for a couple of years now, to generate some interest in some of the area's magazines and online sites.  Unfortunately, people think of hydrocephalus as 'just' a birth defect and nothing more.  They also assume that we all have spina bifida and that we are all living lives of suffering.  I see Awareness Month as having the potential to defy those assumptions and stereotypes.

I know that articles aren't going to be a magical answer to this, but they could contribute to enlightening people about the facts of hydrocephalus.  Particularly that it can be acquired at any time in life.  Unfortunately, I haven't been able to find some answers to my own questions--like the numbers for acquired hydrocephalus in various age groups, excluding congenital.  That includes finding out the numbers for hydrocephalus acquired after a concussion, or several.  When it comes to the latter, research is still being done that could answer some of those questions.

September feels a long way off still, but 2014 is going by so fast!  Doesn't seem like it is July and Seafair time again, already.

As always, this month's meeting will be on the third Saturday of the month, from 12:45 pm to 3:00 pm in the Casey Conference Room at Swedish's Cherry Hill campus (17th & Jefferson). 

OUR THOUGHTS & PRAYERS GO OUT TO THE FAMILY & FRIENDS OF DAMON JANES

OUR THOUGHTS & PRAYERS GO OUT TO THE FAMILY & FRIENDS OF DAMON JANES

It is always sad to lose someone, especially someone so young.  Add the element of the unnecessary, illegal helmet to helmet hit and its avoidability and the tragedy reaches a new level.

So many remain unaware of the very real dangers of concussions and traumatic brain injury (TBIs).  We are coming to the end of National Hydrocephalus Awareness Month and I couldn't find one word from the sports reporters about it or the avoidability of acquiring hydrocephalus through contact sports, like football.  In the coming weeks we will hear about the promising life of Damon Janes, but little or nothing about how avoidable this was.  Helmets are, honestly, a false sense of safety.

More than what goes on inside the helmet is what goes on with the brain inside the skull, which is rough and jagged, not smooth or soft.  In small children it used to be known as Shaken Baby Syndrome.  In teens & adults it is simply a traumatic brain injury (TBI) and that is as far as most reporters take it, falsely believing that the audience "wouldn't understand" if it was explained.  A bruise to the brain or a brain bleed can/does lead to increased pressure on the brain, which can be caused by altering the flow of the fluid that bathes the brain & spine.  You don't "walk off" the effects of a hit to the head, period.  The person who received the blow may not know that they are danger.  The potential patient can think they are fine, especially if they don't have any reference point to go by.  Just looking at them isn't going to tell you what you need to know.

A couple of years ago I spoke with a police representative locally who was amazed that someone could have a brain bleed, or bruise, think they were fine, go to bed and never wake up.  That is the reality of a TBI, especially a closed head injury.

Not just coaches, but parents and players need to be more aware of the potential dangers in having their kids playing contact sports.  I'm not saying never play, just to be very aware of the downsides, as well as the positives.  Rules about what hits are legal and not also needs to be taken more seriously.  It isn't about chickening out or not being a member of the team, it is about long term care and a life away from the field.

Shunts have come a long way, but they are a treatment, not a cure.  The only cure is prevention.  In this case, making sure that hits like the one Mr. Janes took, are appreciated for what they are--dangerous & potentially deadly.

Looking forward to Saturday's meeting.  We will be meeting in the Casey Conference Room at Swedish Hospital's Cherry Hill Campus (17th & Jefferson, Seattle) from 12:45 pm to 3:00 pm.  Drop ins & kids are welcome, as well as anyone wanting information about hydrocephalus.