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.
No comments:
Post a Comment