Showing posts with label hydrocephalus support group. Show all posts
Showing posts with label hydrocephalus support group. Show all posts
Wednesday, December 30, 2015
2016 Meeting Schedule
2016 Meeting Schedule
All meetings are from 12:45 pm to 3:00 pm in the Casey Conference Room at Swedish Medical Center's Cherry Hill campus (17th & E. Jefferson). There is limited street parking, in addition to a parking garage.
We offer moral support and information to families, friends, caregivers and those (of all ages) living with the condition of hydrocephalus. Drop ins are welcome.
January 16
February 20
March 19
April 16
May 21
June 18
July 16
August 20
September 17
October 15
November 19
December 17
March 17th we will be participating in the UW's 2016 Brain Awareness Open House at the HUB Ballroom on the University of Washington campus from 9:30 am to 1:30 pm. We will, as always, be seeing several hundred school age kids, along with their parents and teachers, to talk about brain health and living with hydrocephalus. We also let participants know that hydrocephalus can be acquired at any age.
Happy 2016!!
Monday, May 12, 2014
MAY Meeting Reminder
Just a quick reminder that the May meeting is coming up on the 17th. As usual, we will be meeting in the Casey Conference Room at Swedish Hospital, Cherry Hill Campus (17th & Jefferson) in Seattle from 12:45 pm to 3:00pm. Anyone wanting to share their hydrocephalus experience or wanting information about living with the condition is welcome to attend. Drop ins are welcome.
Our group focuses on overcoming the odds and living the best life possible with the condition of hydrocephalus. We offer moral support and information to families, friends, caregivers & those living with the condition, at any age. Our core members have a cumulative 100+ years of experience living with the condition, which includes overcoming a lot of negative assumptions and stereotypes about living with hydrocephalus. Sadly, there are still those who believe that we are incapable of having productive, fulfilling lives because of hydrocephalus, which short-changes everyone.
I brought the hydrocephalus doll to last month's meeting. It is going to be a great teaching tool/visual aid. I've already found that it has broken the ice with a lot of people, opening up a dialog that is welcome. I'd much rather answer questions about it than live in silence. I also like to encourage anyone wanting more information about the condition to attend our monthly meeting, or email us through the blog.
I'm already looking at the possibilities of showcasing the subject in September, for Hydrocephalus Awareness Month. Part of that awareness needs to be that this condition is more than 'just a birth defect' it can, and does, happen at any age. It can happen because of a brain injury or as a result of a tumor and even the spontaneous form--Normal Pressure Hydrocephalus (NPH), which most often occurs in older folks. NPH can present to doctors with many of the same symptoms as Alzheimer's or Parkinson's, which is why it is estimated that it is misdiagnosed in 5-15% of cases. Diagnosed early, treatment and management of NPH is very effective & can limit the damage done. Untreated, the pressure builds and it can be fatal.
As Doctor Richard Ellenbogen (Seattle Children's Hospital; UW Medical Center/Harborview) has said in interviews, a child or young adult has a greater chance of acquiring a brain injury (including hydrocephalus) from a fall from a bicycle than on the football or soccer field. However, that doesn't mean that concussions and brain injuries from sports shouldn't be taken seriously--far from it!
One of my areas of interest is in the training of first responders, who should know the signs and symptoms. They should also be aware of the damage that can be done to the brain by using the head as a punching bag.
I just had my first appt. with a doc on my new insurance plan. Wish I was able to keep my naturopath, but that wasn't an option. However, I'm really hoping to get a real team in place, one that includes a neurologist and neurosurgeon. I would also like to do as much research as possible into my own hydrocephalus. I find it facinating, how the brain works and how my hydrocephalus impacts my life. There are so many unanswered questions! Some of them don't have answers--yet.
I'm also glad that I'm with the teaching clinic so Residents are exposed to hydrocephalus in the real world, rather than just from textbooks. We are each unique, no case is exactly like another. My congenital case isn't the same as someone who had a brain bleed (as a preemie or an adult). My case is also not exactly the same as someone else with congenital hydrocephalus either.
We look forward to seeing everyone at May's meeting!
Take care.
Tuesday, December 17, 2013
DECEMBER MEETING
Happy Holidays! This will be the final meeting of 2013--the year went by SO fast. I'll be posting the 2014 schedule shortly. December 21st, from 12:45 pm to 3:00 pm in the Casey Conference Room at Swedish Hospital's Cherry Hill campus will be our meeting this month. As always, drop ins are welcome, as well as children & anyone wanting information about hydrocephalus.
I also want to take the opportunity to thank Swedish Hospital for their generous assistance in providing us with meeting space for the last several years. It has been great having the space and being available to those in need of moral support in living with hydrocephalus. We look forward to many more years of service to the community and the assistance of Swedish in that effort.
I would also like to thank the many friends of the group, and family members, worldwide, who have helped make the group a success.
I'm looking forward to 2014 with great anticipation. Look forward to seeing new and familiar faces in the coming year.
Monday, November 25, 2013
The 'Knockout Game'
THE 'KNOCKOUT GAME'
How disturbing is this?! Obviously, those participating in this 'game' haven't got a clue about the potential damage they can do with this. Today's national news addressed a few of the deaths that were caused by these careless 'kids' who seem to think that it is 'fun' to knock someone out on the street.
As usual, I look at it from the hydrocephalus perspective. This is one of the many ways that someone can acquire hydrocephalus--through a traumatic brain injury (TBI). Hitting one's head against a sidewalk, curb or wall can/does cause such injuries. I'm sure that this will be a subject of conversation at the December meeting of the Hydrocephalus Support Group, Inc.
I have no idea how this started or how to stop it. I guess that until something happens to those who think this is a game, entertainment or funny it will continue. As I've said before, someone who isn't hyper-aware of their brain isn't going to appreciate that precious cargo the same way as those of us who are living their lives very aware of their brain. While I'm concerned about this in general, specifically, some stranger who isn't aware that someone already has a condition, like hydrocephalus or a TBI already, could SO easily prey on them, causing irreparable damage, or even death. From everything I've seen/heard about this 'game', it is inflicted on complete strangers, so it is quite possible that someone with a pre-existing brain issue could be killed by these kids 'having fun'.
The November meeting was very productive. We discussed ways of increasing our presence online and in Western Washington. I'm looking at ways that we can get involved in more community events, as well as increasing the awareness of the condition with the general public, as well as first responders.
Also wanted to say Thank You to NINDS for sending us the newest hydrocephalus pamphlets to include in our media kits. Looking forward to the Hydrocephalus Association's (HA) contribution of literature to include in the kits.
I'm also hoping that Seattle's new Mayor and his staff will include hydrocephalus awareness throughout the year, but especially during September (Hydrocephalus Awareness Month).
The Allen Institute, here in Seattle, is going to be expanding its brain research to covering CTE, which is great. Founded by Microsoft's Paul Allen, the Institute has already done the brain mapping, which is available online.
I'll be posting the 2014 Schedule in the coming weeks.
Tuesday, October 15, 2013
OCTOBER MEETING--REMINDER
OCTOBER MEETING--REMINDER
October 19th (Saturday) will be this month's meeting. As always, we will be meeting from 12:45 pm to 3:00 pm in the Casey Conference Room at Swedish Hospital's Cherry Hill campus (17th & Jefferson, Seattle). Anyone with an interest or questions about hydrocephalus is welcome to attend. We welcome drop ins & kids. We look forward to seeing new & familiar faces.
Tuesday, September 24, 2013
September Meeting
September Meeting
September's meeting was great! We were small and had hoped that some new faces would come, but they didn't. We still had a great meeting. We had a conference call with a member on the east coast, which is always nice.
Among the things we talked about was how everyone has been doing and some topical news items, as they relate to hydrocephalus. So many associate hydrocephalus only with spina bifida or as a neural tube defect on its own. There are many causes and it can be acquired at any age. We are, as far as I can find, the only hydrocephalus support group in Western Washington that offers moral support and information to families, friends, caregivers and those OF ALL AGES living with the condition. The adult populations get left out, most of the time.
I notice that there is another big push for those research dollars, rather than for advocacy. If only some of those expressing an interest in research would advocate for living the best life possible, rather than trying to 'fix' us. There is a place for research, but not at the expense of those who DO live with the condition daily. For some that is more of struggle than for others, but as we are always saying, every case is unique. It is a real shame that we're still seeing medical professionals giving new parents the old doom and gloom predictions for the unborn, advocating for termination, rather than focusing on the positive. There is no way to know what potential the unborn with hydrocephalus have before birth. None. If someone looked at my brain scans, they might think that I was at death's door. Yet, I'm not, far from it. I'm very much a functioning person with lots of potential left in a very full life. I'm not saying that the road has been easy, it hasn't, but the challenges have worth overcoming.
My mother was told all sorts of horror stories about how my life would be. She was encouraged to turn me over to the state and "forget (she) ever had a child (me)." Like that would ever have happened! She was threatened with being denied access to me in the hospital when she went to the hospital's library to find out what she could about my condition. She was also threatened with being denied access to me because she was (gasp) holding other babies in the nursery. Back in 1961 they didn't appreciate the importance of holding infants. It was also 'suggested' that she not visit me so much in the hospital, because I cried when she left. Thank goodness I was doing something normal!!
My mother was told I would be a vegetable and die by the time I was 13 yrs old. Left in the care of the state, that prognosis would probably have been the case. I recently celebrated my 52nd birthday. I drive, I cook and shop for the family. I'm far from being that vegetable that they predicted I would be and I'm living a very full and active life. Everyone with hydro that I've met has overcome those stereotypes and is living the best life they can, for them.
I was reading where someone posted that there has been no significant improvement on the shunt in the last fifty years. So untrue! There have been MANY improvements. We've gone from being manually drained (over draining was always a possibility with this method) to having programmable shunts that make invasive surgeries less common. Not eliminating them, but greatly reducing the need for them. There are cases of hydrocephalus that can be diagnosed before birth and in some cases, shunt surgery can be done before birth, also greatly reducing brain damage possibilities. But again, we don't know for sure what areas of the brain are effected or to what degree that will dictate someone's potential, until they are born and be allowed to develop into who they are.
My original shunt(s) were primative by today's standards, but after I was 2 yrs old I went 13 years without a shunt surgery, or surgery of any kind. After my revision in 1977 (which I found out later was unnecessary) I went 6 years without a shunt surgery. In 1983 I had a staph infection in the tubing, probably caused by an unrelated, elective surgery I had in 1982. In 1983 I had the infected tubing removed and haven't had any tubing for over 30 years. I also haven't had a hydrocephalus related surgery in that time. I'm not saying that is the case for everyone, but having a surgery every 18 mths isn't everyone's story either. Again, every case is unique.
I realize that without research and the efforts of many scientists, the improvements on the shunt wouldn't have happened. I also agree that research is needed. However, the objection I have is to the idea that we need to be 'fixed' and can't live productive, full lives (whatever that is to each person) without that 'cure'. There are so many causes that a one-size-fits-all 'cure' is truly impossible. What IS possible is lessening the need for shunts, appreciating the real dangers in concussive incidents at any age, finding cures for tumors that impact the flow of csf (cerebral spinal fluid) and changing the mindset that no damage can happen to the brain when it is shaken or kicked. We never hear people, like Dr. Oz, or The Doctors talking about what a neural tube defect actually IS, or the importance of women of child bearing age knowing their folic acid levels and how that can play a significant role in prevention of both spina bifida and hydrocephalus. What we DO hear is how bad fortified flours are, when one of the things that fortified flours were created for was to increase the folic acid in foods because so many women were deficiant in it. The cases of hydroephalus and spina bifida DID go down. The neural tube is developed before most women know they are pregnant, so increasing consumption of foods high in folic acid after finding out they are pregnant is too late.
As part of National Hydrocephalus Awareness Month, I spent a lot of time sending out a number of emails to local public relations firms, hoping that some of them would have some clients interested in doing some tie-in advertising with us. One responded, but said that his clients are Internet and social media based, as well as being based in places other than Washington state. So short sighted! A tie in with social media would be great for both them and us. Where they are based shouldn't really be of concern, since we are talking about an online presence, plus tapping into the potential of reaching many more through social media! I just keep thinking of all those folks thinking that they are alone in their hydrocephalus experience, when that is SO not the case.
Two of our members are going to be taking a video production class series. I'm hoping that this could be another area of outreach that we could utilize. My mind is racing with ideas. I'm already thinking about next September and efforts to increase our visibility for National Hydrocephalus Awareness Month 2014. I'm also working on the Brain Awareness Open House event for 2014.
Look forward to seeing more new faces at the October meeting.
I notice that there is another big push for those research dollars, rather than for advocacy. If only some of those expressing an interest in research would advocate for living the best life possible, rather than trying to 'fix' us. There is a place for research, but not at the expense of those who DO live with the condition daily. For some that is more of struggle than for others, but as we are always saying, every case is unique. It is a real shame that we're still seeing medical professionals giving new parents the old doom and gloom predictions for the unborn, advocating for termination, rather than focusing on the positive. There is no way to know what potential the unborn with hydrocephalus have before birth. None. If someone looked at my brain scans, they might think that I was at death's door. Yet, I'm not, far from it. I'm very much a functioning person with lots of potential left in a very full life. I'm not saying that the road has been easy, it hasn't, but the challenges have worth overcoming.
My mother was told all sorts of horror stories about how my life would be. She was encouraged to turn me over to the state and "forget (she) ever had a child (me)." Like that would ever have happened! She was threatened with being denied access to me in the hospital when she went to the hospital's library to find out what she could about my condition. She was also threatened with being denied access to me because she was (gasp) holding other babies in the nursery. Back in 1961 they didn't appreciate the importance of holding infants. It was also 'suggested' that she not visit me so much in the hospital, because I cried when she left. Thank goodness I was doing something normal!!
My mother was told I would be a vegetable and die by the time I was 13 yrs old. Left in the care of the state, that prognosis would probably have been the case. I recently celebrated my 52nd birthday. I drive, I cook and shop for the family. I'm far from being that vegetable that they predicted I would be and I'm living a very full and active life. Everyone with hydro that I've met has overcome those stereotypes and is living the best life they can, for them.
I was reading where someone posted that there has been no significant improvement on the shunt in the last fifty years. So untrue! There have been MANY improvements. We've gone from being manually drained (over draining was always a possibility with this method) to having programmable shunts that make invasive surgeries less common. Not eliminating them, but greatly reducing the need for them. There are cases of hydrocephalus that can be diagnosed before birth and in some cases, shunt surgery can be done before birth, also greatly reducing brain damage possibilities. But again, we don't know for sure what areas of the brain are effected or to what degree that will dictate someone's potential, until they are born and be allowed to develop into who they are.
My original shunt(s) were primative by today's standards, but after I was 2 yrs old I went 13 years without a shunt surgery, or surgery of any kind. After my revision in 1977 (which I found out later was unnecessary) I went 6 years without a shunt surgery. In 1983 I had a staph infection in the tubing, probably caused by an unrelated, elective surgery I had in 1982. In 1983 I had the infected tubing removed and haven't had any tubing for over 30 years. I also haven't had a hydrocephalus related surgery in that time. I'm not saying that is the case for everyone, but having a surgery every 18 mths isn't everyone's story either. Again, every case is unique.
I realize that without research and the efforts of many scientists, the improvements on the shunt wouldn't have happened. I also agree that research is needed. However, the objection I have is to the idea that we need to be 'fixed' and can't live productive, full lives (whatever that is to each person) without that 'cure'. There are so many causes that a one-size-fits-all 'cure' is truly impossible. What IS possible is lessening the need for shunts, appreciating the real dangers in concussive incidents at any age, finding cures for tumors that impact the flow of csf (cerebral spinal fluid) and changing the mindset that no damage can happen to the brain when it is shaken or kicked. We never hear people, like Dr. Oz, or The Doctors talking about what a neural tube defect actually IS, or the importance of women of child bearing age knowing their folic acid levels and how that can play a significant role in prevention of both spina bifida and hydrocephalus. What we DO hear is how bad fortified flours are, when one of the things that fortified flours were created for was to increase the folic acid in foods because so many women were deficiant in it. The cases of hydroephalus and spina bifida DID go down. The neural tube is developed before most women know they are pregnant, so increasing consumption of foods high in folic acid after finding out they are pregnant is too late.
As part of National Hydrocephalus Awareness Month, I spent a lot of time sending out a number of emails to local public relations firms, hoping that some of them would have some clients interested in doing some tie-in advertising with us. One responded, but said that his clients are Internet and social media based, as well as being based in places other than Washington state. So short sighted! A tie in with social media would be great for both them and us. Where they are based shouldn't really be of concern, since we are talking about an online presence, plus tapping into the potential of reaching many more through social media! I just keep thinking of all those folks thinking that they are alone in their hydrocephalus experience, when that is SO not the case.
Two of our members are going to be taking a video production class series. I'm hoping that this could be another area of outreach that we could utilize. My mind is racing with ideas. I'm already thinking about next September and efforts to increase our visibility for National Hydrocephalus Awareness Month 2014. I'm also working on the Brain Awareness Open House event for 2014.
Look forward to seeing more new faces at the October meeting.
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