Sunday, September 20, 2015
I'd like to start by thanking the group for my belated birthday present. I love the book.
It was great talking to Liz in a conference call. Sorry my phone wasn't able to be used this time around.
We discussed many topics during the meeting. Among them was the issue of finding "A Cure", which so many are seeking. I've found that most of these folks are parents who are new to the hydrocephalus experience and still believe that we all 'suffer' with hydrocephalus, when that isn't the case. As we agreed about at the meeting. No single cure is ever going to be achieved because there are simply so many causes. Focusing on the various causes and working from there for one of MANY 'cures', for lack of a better word, should be much more of where the focus should be.
The cause of a preemie brain bleed and resolving or peventing them would be the answer to one segment of the hydrocephalus population. We already know that congenital hydrocephalus can be greatly reduced when women maintain a healthy level of folic acid throughout their childbearing years. There is also a genetic link for some hydrocephalus. Both men and women should know their family's medical histories.
Prevention is key for a lot of hydrocephalus. Preventing brain bleeds is just one area. Preventing accidents that lead to traumatic brain injury (TBI) is another key. Making sure that as much prevention as possible is part of every bike ride and sport is another great preventative step. However, it isn't a 'cure' it is about prevention to reduce risk.
Hydrocephalus is a manageable, treatable condition. It isn't a disease, although many unfortunately use the terms condition and disease interchangeably. We aren't all 'suffering', most of us are living our best lives with a condition that is simply part of our daily lives. We are realizing our true value in beinig true to ourselves and the lives we've been privileged to live. While hydrocephalus is part of life, it isn't the ONLY thing in our lives.
What many have brought up is the reality that most of the focus has been on children with hydrocephalus, with very little dedicated time put to adults living with the condition. Those kids grow up and become adults. Those adults go to college, get married, have kids & careers. We are rarely shut away from the public or institutionalized simply for having a condition. What also gets ignored are those who acquire hydrocephalus as adults--be it through accident or spontaneously, a condition now called normal pressure hydrocephalus (nph).
NPH is often misdiagnosed as Parkinson's, Alzheimers or some other form of dimentia, delaying or preventing treatment. It is estimated that misdiagnosis occurs in 10-15% of cases before a diagnosis of NPH is made. Unfortunately, a lot of the brain damage done is irreversable.
For those who think that shunts are 'barbaric' and 'primitive', I suggest doing research on how hydrocephalus was treated in the past, before the mid-1950's & 60's. Even since then, shunts have been evolving, to the point where progammable shunts make invasive procedures less frequent. At one time there was research being done on growing shunts from a patient's own tissues, to eliminate the risk of rejection and other complications. We've come a long way in tissue harvesting and issues surrounding it, since the 70's when some of the literature was published.
We are all unique and the secret is to embrace those unique qualities, living life to its fullest.
Thursday, September 17, 2015
Just a quick reminder that the September meeting will be held at Swedish Hospital's Cherry Hill campus, in the Casey Conference Room from 1pm to 3 pm on September 19th. We look forward to seeing everyone. Remember, drop ins and kids are welcome.
'Inside The Brain' can be viewed on YouTube. It is well worth the time to watch. Lots of really great information about the brain & what research is being done.
Monday, September 14, 2015
I watched most of 'Inside The Brain' on KOMO TV (Channel 4, Seattle) last night. Very interesting. It was produced in conjunction with Seattle Children's Hospital.
They spoke with a couple of the neurosurgeons at Children's, one of them is doing extensive research and development of a safer helmet for sports. It was hard for me to watch even the dummy head being slammed, but well worth the emotional discomfort.
They also discussed a variety of areas of brain research that was quite interesting. To think, this is still in the early stages & what will be found out in just the next few years!
Overall, it was time well spent. Hoping for a follow up in the future.
It also provides a springboard for conversation at this month's meeting on the 19th.
Thursday, September 10, 2015
KOMO/4, Seattle area's ABC affiliate, will be airing a special called 'Inside The Brain' on Sunday evening. From the previews it looks like a facinating program. For those unable to watch on channel 4 in the Seattle market, it can be found on KOMO's website.
Friday, September 4, 2015
Hard to believe it is already National Hydrocephalus Awareness Month! We have been talking about an array of possible ways to attract attention the cause this month. A couple of them involve getting group tickets so we can showcase hydrocephalus. So we are looking for supporters and those living with hydrocephalus to help in the efforts to raise awareness.
This month's meeting will be on the 19th, from 1-3 pm in the Casey Conference Room at Swedish Hospital's Cherry Hill campus. Drop ins are welcome, as well as families and anyone with an interest in finding out more about the condition of hydrocephalus.
Many aren't aware that hydrocephalus can be acquired at any age, through numerous causes. This includes traumatic head injury (TBI), brain tumors, car/bike accident or even spontaneous (normal pressure hydrocephalus) which is often misdiagnosed as Parkinson's or Alzheimer's. So it isn't limited to congenital hydrocephalus, which is often part of spina bifida. Because there are so many causes, there can never be a one-size-fits-all 'cure' for the condition (it isn't a disease, although condition & disease are often used interchangeably).
The journey of life with hydrocephalus can be a bumpy one, but the majority of us still see our lives as productive, interesting & welcome the challenges that it provides.