Tuesday, May 20, 2014
While it was interesting to see Dr. Ben Carson (retired neurosurgeon) on The View this morning, it would have been nice if they had provided more time for him to talk about health care, in general. He is certainly more conservative than I am, but he was one of the best neurosurgeons in the country for many years. I'd rather hear HIS take on health care than some celebrity.
Rather than seeing him as President, I would like to see him as Surgeon General! Not that he couldn't be a very successful President. I'd rather see his expertise being put to use in ways that would benefit the country in ways that the role of President isn't able to. I'd like to see him address brain injury in veterans, brain injury in general and issues that get pushed aside in favor of those that have a 'sexier' appeal to spin doctors in Washington.
I do disagree when it comes to having a health care savings account, rather than a single payer plan. That would keep a lot of people away from health care, since most of us can't afford to save for our futures as it is. Those with the means to set aside the kind of money it takes to cover the unexpected health care crisis in life always seem to 'forget' about those who have to choose between rent and food. It isn't a pretty concept, but a necessary one. Many people put off basic health care because of the cost.
There are lots of people who can't work, or who are the working poor. For them meds are a luxury, even if their lives depend on it. The estimate here, in Seattle, is that someone has to make at least $50,000/year to live comfortably. Most people I know, even those working forty hours a week, or more, don't bring home that much. Rent here for under $1,000/mth is difficult to come by. That doesn't include food, utilities, phone and other elements of life that many of us have to consider luxuries, including health coverage. We are looking at a crisis with public transit in the county right now. Cutting service, with little or no regard for those who don't have the luxury of choosing between riding the bus or driving their car leaves many stranded. Even for those on the reduced fare program(s), riding just to and from work can cost a person on the reduced fare program over $500/yr! Less than maintaining a car, but nevertheless, it can be a hardship on a fixed or low income. It is also not the most reliable of transportation, for some jobs if you are late three times, even by five or ten minutes, it can cost you your job.
I rode the bus for over thirty years and saw, or knew, people with disabilities who had no option. They weren't able to drive, it wasn't about a choice for them. I've said for years that the decision makers drive and make enough to park in expensive parking lots. They are out of touch with the most vulnerable users of public services.
So on many levels I disagree with Dr. Carson. However, that isn't everything. I'll always have a soft spot for most people who have, at some time or another, worked in the field of neurology, neuroscience and neurosurgery.
Monday, May 19, 2014
This month's meeting was interesting. We discussed hydrocephalus history and plans to do more research on various aspects of the subject. The topic brought up the issue of the 'cure' that so many newer parents seem to have an obsession of. I've brought this up before, along with my views, which are often shared by others with the condition. It isn't that we are against research into hydrocephalus, just that the idea that we all need to be 'fixed' or that we are all 'suffering' and need some one-size-fits-all approach to ending the condition isn't where we feel all energies need to be trained on.
To see where hydrocephalus, and its treatment, have been and where we are today, it is why we are grateful for the strides that have been made. I recall one of my neurologists saying that if the math portion of my brain hadn't been damaged by the hydrocephalus, I would have made a good doctor. However, if I didn't have hydrocephalus, then I wouldn't have the hyper-awareness of my brain, or my interest in how the brain works! I also wouldn't have any interest in the possible genetic aspect of my hydrocephalus. As I've said before, if I didn't have this condition (it isn't a disease) I would think of my brain the way most people think of their big toe. I wouldn't think of it, unless I injured it or had on a tight fitting pair of shoes.
I also remember being told, by a new parent to the hydrocephalus experience, that he couldn't understand why "you people get so upset about research". Actually, he also said that I was against research and implied (many times) that we adults with hydrocephalus are incapable of understanding the complex issues around the condition. As though those of us, adults, who have had a lifetime of experience in dealing with various aspects of the condition don't know what we are talking about!! Then again, he and his wife said that they didn't need to hear from parents with over fifty years of experience of having 'kids' with hydrocephalus.
Exploring various aspects of hydrocephalus history is going to be interesting. I'm looking forward to it.
Another subject, which I want to bring up at next month's meeting, is this discussion of Ms. Clinton's head injury several months ago and Karl Rove's opinions about it. He seems to conveniently forget that Ronald Reagan had a head injury after falling from a horse. He also was in the early stages of Alzheimer's when in office. No one said 'boo' about that then. He wasn't saying that the President had no business being in office. Sorry, to those who don't believe that President Reagan didn't have Alzheimer's until after he left the White House, but the medical profession has stated in more than one source, that people with Alzheimer's have the disease for a decade or more prior to definitive diagnosis. That would have put President Reagan smack in the middle of his time in office. There are those who also question whether the fall from the horse and subsequent head injury didn't leave him with possible hydrocephalus, not as a result of the Alzheimer's, but because of the fall.
The idea that because someone has had a head injury that they are suddenly incapable of decision making is not based on fact. People go on after head injury to have full lives, with the ability to make decisions remaining in tact. In fact, most people with head injuries go on to drive, raise families and enjoy their lives without having their mental health or abilities being in question.
Friday, May 16, 2014
My Apology For Spelling Error
My apology for the spelling error in the previous post. I misspelled anencephaly.
Changing subjects a bit, I have been contacted with a question about support groups (specifically in eastern Washington state) for parents of anencephaly babies. We couldn't find anything in our searches. Anyone knowing of an existing group, or interested in starting one can contact us.
Wednesday, May 14, 2014
KOMO 4's COVERAGE OF CLUSTER OF ANANCEPHALY IN WASHINGTON STATE
Last night KOMO 4, Western Washington state's ABC affiliate, had a very compelling story about the cluster of anancephaly cases occurring in eastern Washington state. It seems that three counties in that part of the state are having an unusual number of cases, four times the national average, of late.
While our group's focus is on hydrocephalus, anancephaly is also a neural tube defect that prevents the full development of the brain. In most cases these kids live for a matter of hours, there have been some who have lived longer, but they lack the brain development to live very long or develop into fully functioning children. So even though this isn't directly related to hydrocephalus, it is still an interest for some of us as a brain issue.
Jeff Burnside, the reporter at KOMO4, did a good job of describing the situation. I had seen another story about this subject on The Doctors awhile back. Everyone impacted by this story is wondering why this is happening with such frequency in this particular area. As with congenital hydrocephalus, anancephaly is a neural tube defect where the mother's folic acid levels are of critical importance. Yet, is the cause of this cluster partially (or wholly) related to pollution, contamination, pesticide exposure, exposure to unknown elements from the Hanford site? Other news reporters have been investigating illnesses and unreported dangers to workers at the Hanford site cleanup, just as Hanford did during government testing over 60 years ago. There are lots of unanswered questions and concerns about how all this could (or might not) be related to what is happening today to the unborn.
It is going to be interesting to see how this plays out over the next months, years and decades. The CDC is looking at this cluster with interest, apparently.
Monday, May 12, 2014
Just a quick reminder that the May meeting is coming up on the 17th. As usual, we will be meeting in the Casey Conference Room at Swedish Hospital, Cherry Hill Campus (17th & Jefferson) in Seattle from 12:45 pm to 3:00pm. Anyone wanting to share their hydrocephalus experience or wanting information about living with the condition is welcome to attend. Drop ins are welcome.
Our group focuses on overcoming the odds and living the best life possible with the condition of hydrocephalus. We offer moral support and information to families, friends, caregivers & those living with the condition, at any age. Our core members have a cumulative 100+ years of experience living with the condition, which includes overcoming a lot of negative assumptions and stereotypes about living with hydrocephalus. Sadly, there are still those who believe that we are incapable of having productive, fulfilling lives because of hydrocephalus, which short-changes everyone.
I brought the hydrocephalus doll to last month's meeting. It is going to be a great teaching tool/visual aid. I've already found that it has broken the ice with a lot of people, opening up a dialog that is welcome. I'd much rather answer questions about it than live in silence. I also like to encourage anyone wanting more information about the condition to attend our monthly meeting, or email us through the blog.
I'm already looking at the possibilities of showcasing the subject in September, for Hydrocephalus Awareness Month. Part of that awareness needs to be that this condition is more than 'just a birth defect' it can, and does, happen at any age. It can happen because of a brain injury or as a result of a tumor and even the spontaneous form--Normal Pressure Hydrocephalus (NPH), which most often occurs in older folks. NPH can present to doctors with many of the same symptoms as Alzheimer's or Parkinson's, which is why it is estimated that it is misdiagnosed in 5-15% of cases. Diagnosed early, treatment and management of NPH is very effective & can limit the damage done. Untreated, the pressure builds and it can be fatal.
As Doctor Richard Ellenbogen (Seattle Children's Hospital; UW Medical Center/Harborview) has said in interviews, a child or young adult has a greater chance of acquiring a brain injury (including hydrocephalus) from a fall from a bicycle than on the football or soccer field. However, that doesn't mean that concussions and brain injuries from sports shouldn't be taken seriously--far from it!
One of my areas of interest is in the training of first responders, who should know the signs and symptoms. They should also be aware of the damage that can be done to the brain by using the head as a punching bag.
I just had my first appt. with a doc on my new insurance plan. Wish I was able to keep my naturopath, but that wasn't an option. However, I'm really hoping to get a real team in place, one that includes a neurologist and neurosurgeon. I would also like to do as much research as possible into my own hydrocephalus. I find it facinating, how the brain works and how my hydrocephalus impacts my life. There are so many unanswered questions! Some of them don't have answers--yet.
I'm also glad that I'm with the teaching clinic so Residents are exposed to hydrocephalus in the real world, rather than just from textbooks. We are each unique, no case is exactly like another. My congenital case isn't the same as someone who had a brain bleed (as a preemie or an adult). My case is also not exactly the same as someone else with congenital hydrocephalus either.
We look forward to seeing everyone at May's meeting!