BRAIN AWARENESS OPEN HOUSE--SO NEAR!
The 2013 Brain Awareness (BAW) Open House is coming up on Tuesday, the 5th of March! Can't believe it is coming up so soon.
I picked up some of the giveaway items, so kindly donated by KING5 Television, for our exhibit. One of our topics this year is about how weather (specifically the barometric pressure) impacts those of us with shunts. It ties is with the weather dvd that KING5 donated. Their donations are always welcome additions to our table(s) at the event.
We still have some giveaway items from last year and are expecting some items from other sources in the coming days. We'll have lots of 'stuff', which is always great.
We will be seeing several hundred kids from Washington state schools--everything from private and home schooled kids to public school students. In addition, we will be seeing lots of parents and teachers.
I'm already brainstorming for next year's exhibit. Hard to believe that we've been part of BAW for over 12 years. How time flies! Lots of surprises, hopefully.
I'm hoping to be able to post pictures from this year's event on the blog shortly after returning from the event.
Yesterday I found a number of periodical articles on hydro that were published in February, 2013. I just skimmed them, since I was at the library and running out of time on the library computer. I'd love to include some of the articles and information in our BAW exhibit.
Thursday, February 28, 2013
Sunday, February 17, 2013
FEBRUARY MEETING
This month's meeting was our last before March 5th's Brain Awareness Open House Event. We are still getting 'stuff' together for the exhibit, including searching for a tv/dvd combo unit (small) so we can show a couple of dvds.
I'm still hoping to get some donated items from KING5, our local NBC affiliate. They have donated things, like reusable bags, in the past. The reusable bags were a big hit with the kids at the event.
We are looking forward to having Medtronic being a part of the exhibit again this year too. Another aspect of our exhibit that has gone over well with the kids, as well as parents and teachers.
As always, I'm hoping for more than we get for each year's exhibit. Some day I would love to have some neuro researchers with a focus on hydrocephalus at our booth. I'd also like to have a 'wall' of brain scans to show kids how every one is unique. While I found some online, I'm not sure how good the quality of them would be after being reproduced.
I'm also hoping to get a new charger for my camera and be able to post pictures from BAW.
At the February meeting we had a new person join us, which was great. We got to hear his story and he got to hear our's. Hope to see him at future meetings!
I was sorry to hear that Dr. Ben Carson, neurosurgeon, will be retiring later this year. He is one of the country's premiere pediatric neurosurgeons. He spoke at last week's Prayer Breakfast in Washington DC. He was also on ABC's This Week.
Looking forward to the March meeting where we will be discussing BAW.
Thursday, January 17, 2013
January Meeting Cancelled
Unfortunately, we are having to cancel the January meeting due to illness. Several of us have this 'bug' going around and don't want to infect others. We WILL have the February meeting, as scheduled.
Hope to see everyone in February!
Hope to see everyone in February!
Sunday, January 6, 2013
2013 Meeting Schedule
2013 MEETING SCHEDULE
All our meetings will be in the Casey Conference Room at Swedish Hospital's Cherry Hill Campus (17th & Jefferson, Seattle) from 12:45 to 3:00 pm. Drop ins & children are welcome.
All our meetings will be in the Casey Conference Room at Swedish Hospital's Cherry Hill Campus (17th & Jefferson, Seattle) from 12:45 to 3:00 pm. Drop ins & children are welcome.
- January 19th
- February 16th
- March 16th
- April 20th
- May 18th
- June 15th
- July 20th
- August 17th
- September 21st
- October 19th
- November 16th
- December 21st
Thursday, December 20, 2012
December 2012 Meeting
Hard to believe that this was our final meeting for 2012! As always, we had a great discussion about aspects of living with hydrocephalus, as well as a small holiday celebration.
In the last month I've been doing a bit of research about hydro research and spoke with a very interesting researcher. It is always great talking to someone about our perspective, of living with the condition. Then there is the issue of condition vs disease. The neuro-science folks may use the terms interchangeably, but many of us see a HUGE difference between the two! It is one of the reasons why I am always saying in my emails about our group that we are there for families, friends, caregivers & those (of all ages) living with the condition of hydrocephalus, because we aren't 'diseased' we are living with a condition & all the complexities that go along with that.
Some of the research being done is great & very interesting. I am most interested in the possibility of science being able to 'grow' shunt tubing in the lab, using the patient's own cells. What I'm NOT a fan of is the idea that there is one 'magic pill' that will 'cure' us. There are simply too many variables with hydro to have one 'cure'. There is effective treatment that is improving all the time--shunts. The cause of hydro from a brain bleed is very different from hydro caused by a neural tube defect. There are also those accidents and injuries during contact sports or car accidents. The only way to 'cure' those causes is prevention. Explaining what neural tube defects are & how women of child bearing age can prevent them is the only way to prevent, or lessen the risk of congenital hydro & spina bifida. Finding ways to lessen, or eliminate, brain bleeds in preemies is another way to prevent the hydro complication. Gaining a healthy respect for head injury & the potential damage is all about prevention of life altering conditions like hydro. Along those same lines, we are continuing to see veterans return from being in harm's way far too often with acquired hydro, sometimes undiagnosed.
Not everyone with a shunt has horrible complications either. While I know many who have had complications, I also know those who have overcome those complications and live very full lives. It will be 30 yrs ago in January since I had any hydro related surgery! I know that isn't true for everyone, but it also isn't true for everyone that we have complications every 18 mths or so either. There are challenges, but it is SO worth overcoming those challenges & living the best life possible, without perpetuating the myth that we are all somehow suffering or living less than productive lives!
I will be posting the article that appeared in Parade magazine several weeks ago, about Normal Pressure Hydrocephalus (NPH). It has generated calls to us with loved ones asking a lot of questions about how they can make sure that their loved one has the proper diagnosis. It has surprised others that there is a 5-10% rate of misdiagnosis, with NPH being misdiagnosed as Alzheimers or Parkinsons. Treated early, with a shunt, outcomes can be quite positive, with less potential brain damage than those left untreated. Some patients with Alzheimers or Parkinsons have also been found to benefit from a treatment of shunt.
I will also be posting the 2013 meeting schedule shortly. The schedule is going to remain the same--the third Saturday of each month, at Swedish Hospital's Cherry Hill campus (17th & Jefferson, Seattle), in the Casey conference room from 12:45 to 3:00 pm. We welcome families, friends, caregivers & those (of all ages) living with hydrocephalus. Drop ins & kids are welcome to attend.
As always, this time of year, we're looking for volunteers and donations for the Brain Awareness Open House event at the University of Washington. It is a one day event reaching several hundred students from Western Washington state, parents & teachers. It is a great outreach project for us. It is part of the Brain Awareness Week program. Hopefully, we will have a lot of 'stuff', in addition to our informational material and members to talk about living with the condition, as we did last year.
Fortunately, 2012 has been good to our members. We haven't had problems with our hydro this year & hopefully, 2013 will be the same!
Happy holidays! Happy New Year!
In the last month I've been doing a bit of research about hydro research and spoke with a very interesting researcher. It is always great talking to someone about our perspective, of living with the condition. Then there is the issue of condition vs disease. The neuro-science folks may use the terms interchangeably, but many of us see a HUGE difference between the two! It is one of the reasons why I am always saying in my emails about our group that we are there for families, friends, caregivers & those (of all ages) living with the condition of hydrocephalus, because we aren't 'diseased' we are living with a condition & all the complexities that go along with that.
Some of the research being done is great & very interesting. I am most interested in the possibility of science being able to 'grow' shunt tubing in the lab, using the patient's own cells. What I'm NOT a fan of is the idea that there is one 'magic pill' that will 'cure' us. There are simply too many variables with hydro to have one 'cure'. There is effective treatment that is improving all the time--shunts. The cause of hydro from a brain bleed is very different from hydro caused by a neural tube defect. There are also those accidents and injuries during contact sports or car accidents. The only way to 'cure' those causes is prevention. Explaining what neural tube defects are & how women of child bearing age can prevent them is the only way to prevent, or lessen the risk of congenital hydro & spina bifida. Finding ways to lessen, or eliminate, brain bleeds in preemies is another way to prevent the hydro complication. Gaining a healthy respect for head injury & the potential damage is all about prevention of life altering conditions like hydro. Along those same lines, we are continuing to see veterans return from being in harm's way far too often with acquired hydro, sometimes undiagnosed.
Not everyone with a shunt has horrible complications either. While I know many who have had complications, I also know those who have overcome those complications and live very full lives. It will be 30 yrs ago in January since I had any hydro related surgery! I know that isn't true for everyone, but it also isn't true for everyone that we have complications every 18 mths or so either. There are challenges, but it is SO worth overcoming those challenges & living the best life possible, without perpetuating the myth that we are all somehow suffering or living less than productive lives!
I will be posting the article that appeared in Parade magazine several weeks ago, about Normal Pressure Hydrocephalus (NPH). It has generated calls to us with loved ones asking a lot of questions about how they can make sure that their loved one has the proper diagnosis. It has surprised others that there is a 5-10% rate of misdiagnosis, with NPH being misdiagnosed as Alzheimers or Parkinsons. Treated early, with a shunt, outcomes can be quite positive, with less potential brain damage than those left untreated. Some patients with Alzheimers or Parkinsons have also been found to benefit from a treatment of shunt.
I will also be posting the 2013 meeting schedule shortly. The schedule is going to remain the same--the third Saturday of each month, at Swedish Hospital's Cherry Hill campus (17th & Jefferson, Seattle), in the Casey conference room from 12:45 to 3:00 pm. We welcome families, friends, caregivers & those (of all ages) living with hydrocephalus. Drop ins & kids are welcome to attend.
As always, this time of year, we're looking for volunteers and donations for the Brain Awareness Open House event at the University of Washington. It is a one day event reaching several hundred students from Western Washington state, parents & teachers. It is a great outreach project for us. It is part of the Brain Awareness Week program. Hopefully, we will have a lot of 'stuff', in addition to our informational material and members to talk about living with the condition, as we did last year.
Fortunately, 2012 has been good to our members. We haven't had problems with our hydro this year & hopefully, 2013 will be the same!
Happy holidays! Happy New Year!
Wednesday, December 12, 2012
Correction For December Meeting
So sorry about giving the wrong date for the December, 2012 meeting. We WILL be meeting this Saturday (not Monday) from 12:45 pm to 3:00 pm in the Casey Room at Swedish Hospital's Cherry Hill Campus. Look forward to seeing everyone this Saturday!
Sunday, October 21, 2012
October 2012 Meeting
The October, 2012 meeting took place on Saturday, the 20th. We talked about an array of topics, including current articles and information about hydrocephalus. One of the topics was the further study of scientists growing a shunt from someone's own cells. It would solve some of the problems/issues around shunts. Several of us at the meeting have had old shunts that allowed our own tissues to build around it, so that when they were removed, there was a 'natural' path for the fluid to be directed to.
I also commented on an article I found online, from the Dorango (sp) Herald about hydrocephalus that gave quite a bit of misinformation. My pet peeve is calling a condition a disease and continuing to perpetuate myths about what it is to live with a condition, like hydrocephalus.
Research is great, but there isn't one single cause of hydrocephalus, so there is never going to be a magic 'cure' for it. Congenital hydrocephalus has to do with folic acid levels and there is a form that has a genetic component to it. Post birth brain bleeds can be caused by any number of things--including head trauma and simply being a preemie. The 'cure' for that would be to study how to prevent brain bleeds in newborns.
Accident involving head trauma/injury is another. Avoiding accidents is the 'cure' for acquiring hydrocephalus through brain injury. We are seeing quite a few veterans coming back home with TBIs (Traumatic Brain Injury) and some have been misdiagnosed, or not diagnosed at all, so that preventable damage isn't addressed. The 'cure' is to find ways to avoid even the most minor brain trauma injuries during wartime and taking those TBIs, particularly closed head injuries, more seriously when initial treatment can prevent some damage.
It isn't just about TBIs from war zones or some dramatic accident. More research is finding that head injuries, particularly concussions, are a problem for kids, teens and young adults playing a variety of games--like football and soccer.
Normal Pressure Hydrocephalus (NPH) needs to be taken more seriously with older adults, rather than misdiagnosing it as Alzheimers or Parkinsons. Both are all too often the misdiagnosis when prompt treatment would allow someone with NPH to live a more 'normal'/familiar life.
We also had some great laughs--a lot of 'hydro humor' we are known for!
Hope to see everyone at the November 17th meeting. As always, we will be at Providence Cherry Hill Campus (17th & Jefferson) in the Casey Room from 12:45 pm to 3:00 pm. Drop ins are welcome. We offer moral support, information and education to families, friends, caregivers and those (of all ages) living with the condition of hydrocephalus.
Happy Holidays!!
I also commented on an article I found online, from the Dorango (sp) Herald about hydrocephalus that gave quite a bit of misinformation. My pet peeve is calling a condition a disease and continuing to perpetuate myths about what it is to live with a condition, like hydrocephalus.
Research is great, but there isn't one single cause of hydrocephalus, so there is never going to be a magic 'cure' for it. Congenital hydrocephalus has to do with folic acid levels and there is a form that has a genetic component to it. Post birth brain bleeds can be caused by any number of things--including head trauma and simply being a preemie. The 'cure' for that would be to study how to prevent brain bleeds in newborns.
Accident involving head trauma/injury is another. Avoiding accidents is the 'cure' for acquiring hydrocephalus through brain injury. We are seeing quite a few veterans coming back home with TBIs (Traumatic Brain Injury) and some have been misdiagnosed, or not diagnosed at all, so that preventable damage isn't addressed. The 'cure' is to find ways to avoid even the most minor brain trauma injuries during wartime and taking those TBIs, particularly closed head injuries, more seriously when initial treatment can prevent some damage.
It isn't just about TBIs from war zones or some dramatic accident. More research is finding that head injuries, particularly concussions, are a problem for kids, teens and young adults playing a variety of games--like football and soccer.
Normal Pressure Hydrocephalus (NPH) needs to be taken more seriously with older adults, rather than misdiagnosing it as Alzheimers or Parkinsons. Both are all too often the misdiagnosis when prompt treatment would allow someone with NPH to live a more 'normal'/familiar life.
We also had some great laughs--a lot of 'hydro humor' we are known for!
Hope to see everyone at the November 17th meeting. As always, we will be at Providence Cherry Hill Campus (17th & Jefferson) in the Casey Room from 12:45 pm to 3:00 pm. Drop ins are welcome. We offer moral support, information and education to families, friends, caregivers and those (of all ages) living with the condition of hydrocephalus.
Happy Holidays!!
Subscribe to:
Posts (Atom)