September is coming fast! This is National Hydrocephalus Awareness Month and we are, as always, looking for ways to bring awareness to the issue of living with hydrocephalus. For us, obviously, this is a daily issue and while it is great that we have a national movement of awareness, we need to keep that concept alive twelve months out of the year.
I have been looking for ways to combine that with fundraising ideas for the group. We have a few programs in the Seattle area that the group needs to be looking at participating in, that would both raise awareness and funds for us, as a 501(c)3 nonprofit organization.
I've also been looking at various events (fairs, health fairs, etc.) that we might be able to include in our outreach projects. Right now, our biggest event is the UW's Brain Awareness Open House, which is a great event--we love taking part every year, but we need to find some additional events to participate in throughout the year.
It would also be great if we could find some sponsors to help us with participating in some of the events that require money for booth participation.
Admittedly, I should have been trying harder to get some articles in local and regional papers and magazines for September's awareness month. Awareness is about much more than looking for research dollars. It is about informing the public about ALL that hydrocephalus is (and isn't), not just focusing on one aspect, that of finding research dollars.
Another aspect of awareness is about letting those living with the condition know that they aren't alone and that groups, like the Hydrocephalus Support Group, Inc., are out here for them to participate in. That includes family members, friends, caregivers and those in the medical community as well. All too often, we (and those close to us) are left feeling isolated with this condition.
As I always say, we look forward to seeing new faces at the monthly meetings and increasing our membership. The next meeting is on September 21st, from 12:45 pm to 3:00 pm in the Casey Conference Room at Swedish Medical Center's Cherry Hill Campus (17th & Jefferson) in Seattle. We welcome anyone with an interest in hydrocephalus. Drop ins and children are welcome as well.
Sunday, August 25, 2013
Saturday, August 17, 2013
August Meeting
A small but mighty August meeting. We had one participant call in, so we had a conference call which was nice.
We discussed ideas for Brain Awareness Month, which is coming up in September. Lots of ideas, but too little time. Planning for 2014 is in the works. I promptly came home and did some research into various health fairs and other ideas of expanding our outreach. Next year I would love to see us have some articles in mainstream, local and regional newspapers and magazines. I would also like to see us getting involved in some discussion groups on the topic of brain health and development.
I also sent out a bunch of emails to various producers of events in Western Washington to explore the idea of having booths at events in Summer, 2014.
We also touched on the issues parents have in dealing with having a child with challenges, not limited to hydrocephalus.
Thanks to Frank for bringing me a birthday card. It was great!
Hope to see new faces, as well as the regulars at the September Meeting (9/21/13).
We discussed ideas for Brain Awareness Month, which is coming up in September. Lots of ideas, but too little time. Planning for 2014 is in the works. I promptly came home and did some research into various health fairs and other ideas of expanding our outreach. Next year I would love to see us have some articles in mainstream, local and regional newspapers and magazines. I would also like to see us getting involved in some discussion groups on the topic of brain health and development.
I also sent out a bunch of emails to various producers of events in Western Washington to explore the idea of having booths at events in Summer, 2014.
We also touched on the issues parents have in dealing with having a child with challenges, not limited to hydrocephalus.
Thanks to Frank for bringing me a birthday card. It was great!
Hope to see new faces, as well as the regulars at the September Meeting (9/21/13).
Thursday, August 15, 2013
August Meeting--8/17
Just a quick reminder, the August meeting is this coming Saturday, from 12:45 pm to 3:00 pm in the Casey Conference Room at Swedish Hospital's Cherry Hill Campus (17th & Jefferson) in Seattle. Drop ins & kids are welcome. There is street parking, as well as two parking garages and direct bus service (#3 & #4).
We look forward to seeing new and familiar faces, as always.
Hard to believe that Hydrocephalus Awareness Month is in less than a month! As always, we are looking for as many ways to reach out in the community, especially in September, to shed more light on this important issue.
We look forward to seeing new and familiar faces, as always.
Hard to believe that Hydrocephalus Awareness Month is in less than a month! As always, we are looking for as many ways to reach out in the community, especially in September, to shed more light on this important issue.
Friday, August 9, 2013
SHUNT HISTORY
SHUNT HISTORY
In reading various posts online, primarily from newer parents, I felt that I needed to put things in perspective. There is never going to be a one-size-fits-all 'cure' for hydrocephalus, simply because there are many causes. Prevention is the best 'cure' out there, avoiding the condition all together, but that isn't realistic.
To say that there hasn't been any new development in shunts is simply not true. When I was shunted in 1961, there had been a lot of progress made over the previous decade or so. What was state of the art then is primitive by today's standards. There was a lot, certainly not enough, research and development that went into improving shunts over the last fifty years. Today there are many types of shunts, including programmables, that vastly improve the lives of those of us living with hydrocephalus. Note: We aren't suffering with hydrocephalus, we are living with it. It is also a condition, not a disease.
While the statistics may be accurate, that sixty percent of us will always have some degree of dependance on others, that dismisses the forty percent that ARE independant and productive members of society. Even those on full disability from the government can still be living productive lives, whether that is volunteering in their communities or working a few hours a week for money, if they are able.
We aren't just sitting around, waiting for death to overtake us. A diagnosis of hydrocephalus isn't a death sentence. It shouldn't be seen as such. My mother was told by doctors to turn me over to the state, to be warehoused and it was 'suggested' that she forget all about me because I was going to be a vegetable and dead by the age of 13. I'm about to turn 52 in a few days. I never attended a 'special school', I went to regular, public school from K-12 and went to college. I majored in culinary arts, so their prediction of me never being able to feed myself was proven untrue, along with a lot of other 'definite ideas' from the early 60's.
I certainly understand and appreciate parents' concerns about their children and the type of life they will lead, but that is true for every parent. No child totally lives up to the expectations their parents had for them when they were born.
I'm not against research, in general. I want to know as much as possible about my hydrocephalus, just as many of us do. What I don't need is to be 'fixed' or underappreciated for what I have to offer because of some myths that persist about my condition. I've met quite a few others, in my age group, who have had periods of time where their hydrocephalus was 'arrested'. That doesn't mean it doesn't exist, only that it isn't active. Mine has been 'arrested' for almost 30 years. But it could become active again an hour from now, or never. I have been without a shunt, which is rare, for over 30 years. That too could change, but it doesn't dictate how I live my life. My family and I focus on what I CAN do, rather than what I can't.
Today's new parents to hydrocephalus have access to lots of information, support groups and a much more accessible medical profession than my mother did in 1961. She was told that she would be forbidden to see me in the hospital if she insisted on going to the medical library and finding out as much as she could. She was also told that she shouldn't visit me in the hospital because when she left I would cry. Thank goodness I did something NORMAL! She was also told that she shouldn't touch or hold any of the other babies in the nursery. Today, hospitals can't get enough volunteers to hold sick babies!!
We have people living productive lives in our group, who have been living with hydro for over 50 yrs. We also have parents and family members who have been around us throughout our lives. It is a challenge to live with hydro, but it is also a blessing rather than a curse. It is scary for those who are new to it and sometimes it is scary for us as well, but it is definitely worth the fight to live.
Monday, August 5, 2013
AUGUST MEETING
AUGUST MEETING
The August meeting will be held on the 17th, from 12:45 to 3:00 pm in the Casey Conference Room at Swedish Hospital's Cherry Hill Campus (17th & Jefferson). We welcome families, friends, those (of all ages) living with hydrocephalus, kids and drop ins.
Last month's meeting was very successful. It was great seeing new faces, as well as the familiar ones.
Wednesday, July 24, 2013
July Meeting Round Up
The July meeting was a great succcess! We had a new face this month, which was great. Hopefully there will be more in the coming months. We answered a lot of questions and had a great dialog. It was also great to see a friend of the group attending this month, it was a very pleasant surprise!
It is always great to answer questions and make dealing with hydro a bit less daunting for family, friends, caregivers and those living with the condition. As often happens, we got around to one of our pet peeves, the issue of labeling those of us living with hydro as being 'hopeless' and living less than fulfilling lives. I mentioned one incident that, even years later, bothers me because it was so public and was one of the few times hydro was mentioned on a mainstream medical drama. The doctor came to a couple and said, "Your child has hydrocephalus. Your only option is to terminate the pregnancy, because the child will have no life." Not only was this offensive, and untrue, in general, but the creator/exec. producer/writer of the show has a seizure disorder IRL--so even more so does HOW DARE HE! apply. He had a platform that could have been used to both entertain and inform, but he chose to take the low road. Thankfully, Gray's Anatomy has chosen the high, rather than the low, depicting a child living with hydro as being an active, functional person and the parents as leading normal lives, rather than constantly hovering, waiting for the next 'disaster'.
I was looking for some hydro related bumper stickers to possibly put on the new car, but kept finding these 'Find A Cure For Hydrocephalus' bumper stickers. The opposite message from what I want.
We did mention, during our discussion, the research that had been done decades ago in terms of growing a shunt in the lab with the patient's own cells. I can only imagine how far that could have progressed with the new knowledge of this kind of thing, generally speaking. It would be great if the shunt tubing now used could be replaced with something grown from the patient's own cells. But that isn't about 'The Cure' it is about improving treatment.
Honestly, the only Cure is really prevention. Women of childbearing age making sure that they have healthy levels of folic acid in their system before getting pregnant (afterwards the barn door is closed) and knowing their family histories. From there it is a matter of preventing post birth brain bleeds in preemies, preventing head injuries in sports & other activities. Prevention also includes wearing helmets when bicycling or riding motorcycles, ATVs, snow mobiles, etc. Lots of kids avoid wearing helmets while playing sports, but that is also necessary to prevent concussion as well as acquiring hydrocephalus--but these aspects of hydrocephalus are rarely, if ever, talked about. Prevention also includes how our soldiers are treated when they are placed in harms way. Ignoring or being unaware of the long range aspects of head injury (particularly closed head injuries) is dangerous and leads to undiagnosed hydro, or even misdiagnosed hydro later on.
I saw an interview with Sanjay Gupta a couple of weeks ago and I'm always waiting for him to discuss this issue, but he never does. Someday it would be great to hear him talk about prevention and treatment, as well as what living with hydro involves. But too many of the interviewers (including folks like Dr. Oz) dismiss hydro as being 'too complicated for the audience to understand', which I disagree with. It also isn't nearly as 'rare' as the medical community would like us to believe.
This month's meeting was great! Hope to see more new faces in the months to come.
It is always great to answer questions and make dealing with hydro a bit less daunting for family, friends, caregivers and those living with the condition. As often happens, we got around to one of our pet peeves, the issue of labeling those of us living with hydro as being 'hopeless' and living less than fulfilling lives. I mentioned one incident that, even years later, bothers me because it was so public and was one of the few times hydro was mentioned on a mainstream medical drama. The doctor came to a couple and said, "Your child has hydrocephalus. Your only option is to terminate the pregnancy, because the child will have no life." Not only was this offensive, and untrue, in general, but the creator/exec. producer/writer of the show has a seizure disorder IRL--so even more so does HOW DARE HE! apply. He had a platform that could have been used to both entertain and inform, but he chose to take the low road. Thankfully, Gray's Anatomy has chosen the high, rather than the low, depicting a child living with hydro as being an active, functional person and the parents as leading normal lives, rather than constantly hovering, waiting for the next 'disaster'.
I was looking for some hydro related bumper stickers to possibly put on the new car, but kept finding these 'Find A Cure For Hydrocephalus' bumper stickers. The opposite message from what I want.
We did mention, during our discussion, the research that had been done decades ago in terms of growing a shunt in the lab with the patient's own cells. I can only imagine how far that could have progressed with the new knowledge of this kind of thing, generally speaking. It would be great if the shunt tubing now used could be replaced with something grown from the patient's own cells. But that isn't about 'The Cure' it is about improving treatment.
Honestly, the only Cure is really prevention. Women of childbearing age making sure that they have healthy levels of folic acid in their system before getting pregnant (afterwards the barn door is closed) and knowing their family histories. From there it is a matter of preventing post birth brain bleeds in preemies, preventing head injuries in sports & other activities. Prevention also includes wearing helmets when bicycling or riding motorcycles, ATVs, snow mobiles, etc. Lots of kids avoid wearing helmets while playing sports, but that is also necessary to prevent concussion as well as acquiring hydrocephalus--but these aspects of hydrocephalus are rarely, if ever, talked about. Prevention also includes how our soldiers are treated when they are placed in harms way. Ignoring or being unaware of the long range aspects of head injury (particularly closed head injuries) is dangerous and leads to undiagnosed hydro, or even misdiagnosed hydro later on.
I saw an interview with Sanjay Gupta a couple of weeks ago and I'm always waiting for him to discuss this issue, but he never does. Someday it would be great to hear him talk about prevention and treatment, as well as what living with hydro involves. But too many of the interviewers (including folks like Dr. Oz) dismiss hydro as being 'too complicated for the audience to understand', which I disagree with. It also isn't nearly as 'rare' as the medical community would like us to believe.
This month's meeting was great! Hope to see more new faces in the months to come.
Re: July Meeting
Just a quick reminder that this Saturday will be the July, 2013 meeting of the Hydrocephalus Support Group. We meet in the Casey Room, located within the Swedish Hospital's Cherry Hill Campus (17th & Jefferson, Seattle) cafeteria/dining hall, from 12:45 pm to 3:00 pm. We will probably actually start about 1 pm.
We, as always, welcome anyone with an interest or questions about living with the condition of hydrocephalus. We welcome children & drop ins to the meeting.
We look forward to seeing familiar and new faces at the meeting.
In addition, Charlie Rose's PBS series on The Brain is being rerun this week. It is fascinating and worth watching. The series focuses on the President's Brain Initiative and those who are going to be a part of mapping the brain, similar to what was done with mapping the human geneome. The Allen Brain Institute, locally, is a part of the Initiative.
We, as always, welcome anyone with an interest or questions about living with the condition of hydrocephalus. We welcome children & drop ins to the meeting.
We look forward to seeing familiar and new faces at the meeting.
In addition, Charlie Rose's PBS series on The Brain is being rerun this week. It is fascinating and worth watching. The series focuses on the President's Brain Initiative and those who are going to be a part of mapping the brain, similar to what was done with mapping the human geneome. The Allen Brain Institute, locally, is a part of the Initiative.
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