Wednesday, October 12, 2016
The October meeting will be held on the 15th (the third Saturday of the month) from 12:45 pm to 3:00 pm in the Casey Conference Rm at Swedish Hospital's Cherry Hill campus. We offer moral support and information to families, friends, caregivers and those (of all ages) living with the condition of hydrocephalus. Feel free to drop in! Kids are also welcome.
Monday, September 19, 2016
As usual, we were a small meeting but got a lot accomplished. We discussed ways to increase our visibility during the rest of National Hydrocephalus Awareness Month. There are so many good ideas, but they take more money and prep than we have.
We also discussed shunts and the history of shunts. Actually, the history is very interesting and only makes us appreciate even more the time(s) we were born in. As 'barbaric' as some feel today's shunts are, they were much more so hundreds of years ago. Today's doctors have scans and imaging that weren't available until the last 40 yrs or so. Previous to that surgeons were working 'blind'. Prior to those days, there were all sorts of methods tried for managing hydrocephalus that WERE barbaric and risky.
We talked about the different generations of hydro survivors. Those of us born before the shunts developed by people like Roald Dahl (yes, the author & former husband of Patricia Neal), in the 1950's being 'first generation'. Then those who were born after the CT scan became an available tool being second generation, those born after the MRI and now those born after the programmable shunt.
As we've discovered the evolution of hydro treatment and management, we've really come to appreciate the research and development that has taken us this far. It isn't perfect, but nothing is. It gives families and patients options though, as well as neurosurgeons. There is far less over draining and under draining. We can recline and not have to worry about whether the shunt is going to continue working or not.
I've said this before, but I would love to know what happened to the research being done on using a patient's own DNA to grow their own shunt tubing in a lab, potentially reducing the opportunity of infection or rejection of a synthetic tube. I saw a paper on it published in the 1970's, but nothing more.
We also discussed Zika and some information that was talked about on Doctor Oz. While so much is NOT known about the long range ramifications of the disease, it has been around since the 1940's! It has similarities to Denge Fever. I'm interested in how it might be a cause of hydrocephalus. That is a whole topic unto itself!
Looking forward to October's meeting. Hope to see faces, new and old there. As always, it will be on the third Saturday, from 12:45 pm to 3 pm in the Casey Conference Rm at Swedish Hospital's Cherry Hill campus (16th & E. Jefferson, Seattle). We offer moral support and information to families, friends, caregivers and those (of all ages) living with the condition of hydrocephalus. We welcome drop ins and those with an interest in brain issues, particularly hydrocephalus.
Tuesday, September 13, 2016
Anticipating the September meeting coming up on Saturday, the 17th, from 12:45 pm to 3 pm, as usual. The difference being that this is also National Hydrocephalus Awareness Month. I've been posting a lot on my Facebook, taking every opportunity to share and 'like' others' work to promote awareness of hydrocephalus.
I would really like to do some tie-in promotions and several other things to generate interest and awareness. It would also be great to get back to having an annual picnic again, as another community outreach effort.
It would also be nice to get some more of the hydro dolls and do a 'traveling' project, like the Gnome, complete with a Facebook page to 'follow' them on their travels, then auction them off at the end.
Looking forward to seeing the meeting regulars and possibly some new faces.
Saturday, August 27, 2016
Sorry for the delay in posting about the August meeting. As always, we discussed ideas for increasing awareness about hydrocephalus, as well as the meeting. I'd love to see us get back to having an annual picnic. It would also be great to be able to do some additional promotions.
I'm hoping that increasing our presence on Facebook will help.
I'll have to cut this short for now.
Monday, July 11, 2016
The July Meeting will be held in the Casey Conference Room at Swedish Hospital's Cherry Hill campus (17th & E . Jefferson, Seattle) , from 12:45 pm to 3 pm. We offer moral support and information to families, friends, caregivers and those (of all ages) living with the condition of hydrocphalus. Drop ins are welcome.
Great way to start off the summer!
Thursday, June 16, 2016
This Saturday (June 18) will be this month's meeting. Sorry about having to cancel last month's meeting. As usual, we will be in the Casey Conference Rm at Swedish Cherry Hill campus from 12:45 pm to 3:00 pm.
Part of the reason for last month's cancellation was my arm injury. I dislocated my left arm in an accident in the Safeway parking lot. It involved our car, a lock on one of the doors, a shopping cart and a pointed curb. I got a dislocated shoulder, black eye, sprained wrist & sprained knee out of it. Just got rid of the sling today and I start physical therapy tomorrow.
I do want to say that the Seattle Fire and the EMTs did a great job.
I've been keeping up with my Facebook page and the LinkedIn page.
Fortunately (?), now I have the ability to be on the computer a bit longer than I was there for awhile.
I look forward to seeing everyone on Saturday!
Thursday, May 19, 2016
Sunday, April 10, 2016
Hard to believe that we are already looking at the April meeting already!! It will be on the 16th, from 12:45 pm to 3:00 pm, in the Casey Conference Room at Swedish Hospital's Cherry Hill campus (17th & Jefferson, Seattle). Drop ins are welcome.
We offer moral support and information to families, friends, caregivers and those (of all ages) living with the condition of hydrocephalus.
Looking forward to seeing everyone!
Thursday, March 17, 2016
2016 Brain Awareness Open House
Another successful year's event! Thanks to all who attended (Dave, Frank, Kim & Bobbe), as well as the students, parents and educators. Everyone I spoke with had a good time.
We had lots of interest in the shunt display, thanks to Dave from Medtronic.
There were a lot of inquisitive kids out there, not just interested in the 'free' stuff we had to hand out. It was great talking with kids who really wanted to know about hydrocephalus and what it was like to live with it.
Looking forward to 2017 already!
Friday, March 4, 2016
The booth for Brain Awareness is coming together. It promises to be another rewarding year. We got a box from the Hydrocephalus Association (HA), which is always helpful. We have at least one rep from the shunt manufacturer, Medtronic attending, plus members of the support group.
The estimate is 700 or so kids (grades 4-12), plus parents and teachers. Our exhibit should be full of information and lots of information from those of us living with the condition.
I'm also bringing the educational doll along. This year the doll has a whole new wardrobe and a stroller, so transporting it will be much easier than previous years. It is always a great conversation starter, wherever it goes. We've started dialog with police officers, social workers and lots of others seeing it. It DOES look very real and has been mistaken for an actual baby!
We will be having our monthly meeting on the third Saturday of March, which is the Saturday after Brain Awareness, which will be nice. I'm sure that we will have a lot to talk about.
Sunday, February 14, 2016
We wanted to thank the Hydrocephalus Association for sending us material(s) for the March event. Brain Awareness Open House at the UW will be March 17th, from 9:30 am to 1:30 pm and we are expecting several hundred kids (grades 4-12) during the one day gathering. There have been so many new brain oriented stories and ideas in the news over the last year, there is a lot to talk to them about! Zika is just one of those.
We would also like to thank, in advance, Medtronic, for their annual participation. It is always a pleasure to work with them on our table.
I would personally like to thank our members who come every year to talk with the kids and adults about living with the condition of hydrocephalus. It is always great to see faces we don't always see because of distance, on a monthly basis.
As always, we are constantly looking for ideas for this year's, as well as the 2017, event(s). I've seen a lot of great things online, but our budget wouldn't cover them. The brain version of popular games, cups, mugs, tee shirts, etc. All fun ways of opening up discussion about something most people don't give a second thought to.
Friday, January 22, 2016
I'm sure that we'll be discussing ZIKA at the February meeting. ZIKA is the mosquito-borne illness that is primarily in South America now, but has been found in the US. The illness is particularly dangerous to pregnant women and their unborn children. It is known to cause, among other things, serious birth defects--including microcephaly. It can impede brain development in unborn children.
So little is known about this illness, but it IS getting much needed attention. It raises a lot of questions. Could this impact the number of children born with other brain issues--like hydrocephalus? I'm sure that we can come up with other questions before the next meeting!
Thursday, January 21, 2016
How disappointing, on Wellness Wed. of New Day NW, their 'expert' on aging and brain health failed to mention Normal Pressure Hydrocephalus (NPH). Since treatment is too often delayed because of misdiagnosis, commonly mistakenly diagnosed as Alzheimer's or Parkinson's. Hydrocephalus, while not curable, IS manageable and treatable. It isn't an automatic death sentence.
I've been hoping that a show, like New Day NW, would embrace hydrocephalus and showcase some of our members who have overcome great odds to live very full lives with their condition. Unfortunately, hydrocephalus remains one of those conditions (not a disease) that is kept shrouded in mystery and secrecy. We are constantly having to blow myths and stereotypes out of the water. One of them being that we automatically have less productive lives.