Hard to believe that this was our final meeting for 2012! As always, we had a great discussion about aspects of living with hydrocephalus, as well as a small holiday celebration.
In the last month I've been doing a bit of research about hydro research and spoke with a very interesting researcher. It is always great talking to someone about our perspective, of living with the condition. Then there is the issue of condition vs disease. The neuro-science folks may use the terms interchangeably, but many of us see a HUGE difference between the two! It is one of the reasons why I am always saying in my emails about our group that we are there for families, friends, caregivers & those (of all ages) living with the condition of hydrocephalus, because we aren't 'diseased' we are living with a condition & all the complexities that go along with that.
Some of the research being done is great & very interesting. I am most interested in the possibility of science being able to 'grow' shunt tubing in the lab, using the patient's own cells. What I'm NOT a fan of is the idea that there is one 'magic pill' that will 'cure' us. There are simply too many variables with hydro to have one 'cure'. There is effective treatment that is improving all the time--shunts. The cause of hydro from a brain bleed is very different from hydro caused by a neural tube defect. There are also those accidents and injuries during contact sports or car accidents. The only way to 'cure' those causes is prevention. Explaining what neural tube defects are & how women of child bearing age can prevent them is the only way to prevent, or lessen the risk of congenital hydro & spina bifida. Finding ways to lessen, or eliminate, brain bleeds in preemies is another way to prevent the hydro complication. Gaining a healthy respect for head injury & the potential damage is all about prevention of life altering conditions like hydro. Along those same lines, we are continuing to see veterans return from being in harm's way far too often with acquired hydro, sometimes undiagnosed.
Not everyone with a shunt has horrible complications either. While I know many who have had complications, I also know those who have overcome those complications and live very full lives. It will be 30 yrs ago in January since I had any hydro related surgery! I know that isn't true for everyone, but it also isn't true for everyone that we have complications every 18 mths or so either. There are challenges, but it is SO worth overcoming those challenges & living the best life possible, without perpetuating the myth that we are all somehow suffering or living less than productive lives!
I will be posting the article that appeared in Parade magazine several weeks ago, about Normal Pressure Hydrocephalus (NPH). It has generated calls to us with loved ones asking a lot of questions about how they can make sure that their loved one has the proper diagnosis. It has surprised others that there is a 5-10% rate of misdiagnosis, with NPH being misdiagnosed as Alzheimers or Parkinsons. Treated early, with a shunt, outcomes can be quite positive, with less potential brain damage than those left untreated. Some patients with Alzheimers or Parkinsons have also been found to benefit from a treatment of shunt.
I will also be posting the 2013 meeting schedule shortly. The schedule is going to remain the same--the third Saturday of each month, at Swedish Hospital's Cherry Hill campus (17th & Jefferson, Seattle), in the Casey conference room from 12:45 to 3:00 pm. We welcome families, friends, caregivers & those (of all ages) living with hydrocephalus. Drop ins & kids are welcome to attend.
As always, this time of year, we're looking for volunteers and donations for the Brain Awareness Open House event at the University of Washington. It is a one day event reaching several hundred students from Western Washington state, parents & teachers. It is a great outreach project for us. It is part of the Brain Awareness Week program. Hopefully, we will have a lot of 'stuff', in addition to our informational material and members to talk about living with the condition, as we did last year.
Fortunately, 2012 has been good to our members. We haven't had problems with our hydro this year & hopefully, 2013 will be the same!
Happy holidays! Happy New Year!