Saturday, April 19, 2014
The April meeting was great! Always nice to see familiar faces and have long distance members call in. We talked about a lot of things, including some online community groups.
I brought the educational doll along to introduce to the group. Kim took a picture of Frank and I with the doll, who remains nameless at this point. We were talking about having a naming contest in the future. We also discussed some additional ways we could increase visibility. One of those is to find a way to have a 'traveling' hydrocephalus representative, follow it online through social media venues (Facebook, Twitter) and see how far it could go, as well as what signatures it could gather.
We also discussed how to rebuild our numbers. So many members have moved out of state and don't keep in touch anymore. We really want to build up our numbers, as well as visibility in the community. It would be great to generate more interest in the group and hydrocephalus, in general. I would love to see some of the area media cover hydrocephalus, and us, more thoroughly. It would also be great to find some corporate sponsorship(s) so we could increase the published materials and events we do.
We looked at the sample shunts that were included with the doll, as well as the two posters. Kim took those home with her to keep with our other things, in storage.
We are sending Medtronic our Thank You card for the doll and the samples they sent us. We are SO appreciative. The doll certainly breaks the ice and opens doors to having the conversation about hydrocephalus with others. You can't help but notice the looks it generates. People who would otherwise not ask any questions seem more inclined to do so with the doll as the icebreaker. I love it! Thanks, again, Medtronic!!
It seems that we frequently talk about variety with hydrocephalus, which seems odd to some. We discussed the many variables with the condition and how every case really is unique. Part of that is cause. There are so many causes of hydrocephalus that one 'cure' isn't realistic. What would be applicable for a preemie wouldn't necessarily be something that would work for an adult with Normal Pressure Hydrocephalus (NPH). For a variety of reasons, those parents who are fixated on 'a cure' don't seem to appreciate the history of the shunt, or how hydrocephalus is treated now, vs the past. Many also don't seem to grasp the concept that we don't need to be 'fixed'.
It is this desperate search and a goal to 'fix' us that leads people to thinking that herbal medicine can 'cure' hydrocephalus. It also leads people to not getting treated, when treatment can be the difference between severe brain damage and minimal brain damage. Several years ago, we got a call from a woman who had self-diagnosed (via the Internet) her son with hydrocephalus after he had been abused. She called and said that the child was "in a dark room in (her) house" and was trying to get around the reality of going to an ER and having the abuse reported. Unfortunately, she was never able to be contacted again. I often wonder what happened to that child and if she took our advice, the only advice we could give her, to take the child to the nearest ER. She never answered her phone when we tried to follow up. The idea that there was a child, not being treated, with possible hydrocephalus, will always bother me.
It is a real shame that we are also seeing doctors, who should know better, making assumptions about what our lives will be like when they diagnose it during pregnancy. There is simply no way of knowing what that person will be able to accomplish in his/her lifetime. Assuming that it is going to 'be a vegetable' and be a burden to its parents is simply not living in the real world. Our group, alone, has folks who were diagnosed as infants, who went to regular school (K-12), college and have been employed, raised families and had full lives. Telling parents that their child will live in constant misery and have an uproductive life is short changing everyone--including themselves. There is no way to tell how many surgeries someone will have. Some may have a lot of them over a lifetime, while others won't.
I'll be posting some pics later.