It was great seeing familiar faces! We discussed a wide array of topics, from attitudes (from others) about living with hydrocephalus and misperceptions (again, from others) about what it means to have a hydro diagnosis to having a conference to call with a friend of the group who lives on the east coast. It was all great!
Part of our mission is to overcome the myths and misperceptions of hydro, one major one being that those of us with the condition (not a disease) cannot live full lives. We aren't always having surgeries or living limited lives in wait for something to happen. It is one of my pet peeves, that it is assumed that we 'need' to be 'fixed' or 'cured' and that the only REAL focus should be on finding THE Cure, that one size fits all solution to 'fix' us. Difficult to do when the causes are many and it can be acquired at any age!
As we often do, we discussed the history of the shunt and how far things have come since many of us adults were born, in the 50's and early 60's. The idea of the programmable shunt was, at best, a dream of neuroscientists, but hardly what would have been considered within the realm of reality. As far as research goes, I'm all for it, but not with the sole goal being to 'fix' us. My journey has been an interesting one that I wouldn't change for anything. I would be interested in finding out if mine is genetic, since I was a congenital (born with it), for instance.
I find it facinating that my brain can see scans of itself and learn about itself. I would love to find out about what did and didn't develop in my brain during gestation (sp) but not with the goal being to 'fix' me or others like me.
It has been great seeing Dr. Richard Ellenbogen, a neurosurgeon at Seattle Children's and the UW/Harborview, on local tv talking about concussions. So many folks just don't appreciate the seriousness of head injury, at any age. Many simply don't know the symptoms of a concussion or a closed head injury. Dr. Ellenbogen has also been an advisor to the NFL on the subject.
I recall talking with a Seattle Police Captain about closed head injuries and how it shouldn't be optional for someone they deal with to refuse being checked out before being allowed to go home. He was stunned to find out that someone could have a brain bleed or bruising, NOT know it and not be capable of determining the signs or of acting in their own best interest, going to bed (sleepiness is a symptom) and simply never waking up, or waking up with a life altering situation. The Captain had been one of those who wasn't aware of the symptoms or the seriousness of a head injury.
We also talked about continuing to reach out to folks we haven't seen, or heard from in awhile. Even if just through Facebook or email, we would love to hear from those who haven't been reachable. We like to keep in touch and hear what folks are up to. We also have the ability to have conference calls for the meeting, as we did this month. Those are great, especially for those who are far away or who don't have transportation.
We look forward to seeing everyone at the July 20th meeting. We welcome drop ins, children and those with an interest in hydrocephalus.