Monday, September 19, 2016
As usual, we were a small meeting but got a lot accomplished. We discussed ways to increase our visibility during the rest of National Hydrocephalus Awareness Month. There are so many good ideas, but they take more money and prep than we have.
We also discussed shunts and the history of shunts. Actually, the history is very interesting and only makes us appreciate even more the time(s) we were born in. As 'barbaric' as some feel today's shunts are, they were much more so hundreds of years ago. Today's doctors have scans and imaging that weren't available until the last 40 yrs or so. Previous to that surgeons were working 'blind'. Prior to those days, there were all sorts of methods tried for managing hydrocephalus that WERE barbaric and risky.
We talked about the different generations of hydro survivors. Those of us born before the shunts developed by people like Roald Dahl (yes, the author & former husband of Patricia Neal), in the 1950's being 'first generation'. Then those who were born after the CT scan became an available tool being second generation, those born after the MRI and now those born after the programmable shunt.
As we've discovered the evolution of hydro treatment and management, we've really come to appreciate the research and development that has taken us this far. It isn't perfect, but nothing is. It gives families and patients options though, as well as neurosurgeons. There is far less over draining and under draining. We can recline and not have to worry about whether the shunt is going to continue working or not.
I've said this before, but I would love to know what happened to the research being done on using a patient's own DNA to grow their own shunt tubing in a lab, potentially reducing the opportunity of infection or rejection of a synthetic tube. I saw a paper on it published in the 1970's, but nothing more.
We also discussed Zika and some information that was talked about on Doctor Oz. While so much is NOT known about the long range ramifications of the disease, it has been around since the 1940's! It has similarities to Denge Fever. I'm interested in how it might be a cause of hydrocephalus. That is a whole topic unto itself!
Looking forward to October's meeting. Hope to see faces, new and old there. As always, it will be on the third Saturday, from 12:45 pm to 3 pm in the Casey Conference Rm at Swedish Hospital's Cherry Hill campus (16th & E. Jefferson, Seattle). We offer moral support and information to families, friends, caregivers and those (of all ages) living with the condition of hydrocephalus. We welcome drop ins and those with an interest in brain issues, particularly hydrocephalus.
Tuesday, September 13, 2016
Anticipating the September meeting coming up on Saturday, the 17th, from 12:45 pm to 3 pm, as usual. The difference being that this is also National Hydrocephalus Awareness Month. I've been posting a lot on my Facebook, taking every opportunity to share and 'like' others' work to promote awareness of hydrocephalus.
I would really like to do some tie-in promotions and several other things to generate interest and awareness. It would also be great to get back to having an annual picnic again, as another community outreach effort.
It would also be nice to get some more of the hydro dolls and do a 'traveling' project, like the Gnome, complete with a Facebook page to 'follow' them on their travels, then auction them off at the end.
Looking forward to seeing the meeting regulars and possibly some new faces.