Great cartoon video on why we need universal health care.

Given the fact that patients have been shamelessly and copiously sharing information on the web since, well, it first sprung up, it is nice to see that the medical establishment has gotten on board with the idea of collaboration. Medpedia is firmly an expert project (though it looks like anyone can provide suggestions) and I am not bothered by this limitation. What I do hope to see is a recognition of the controversies that abound in the realm of medicine (Lyme disease, fibromylagia, and a real hot rod issue = autism). There is much about diagnosis and therapy in medicine that exists in the “I am not sure (how to diagnose/treat” category and I wonder if this will be reflected in this new project. I certainly hope so.

I have not heard of them until last week but I like their name, Frog Design, and they have an issue dedicated to Health Care including an intriguing article The Paradox of Choice
A capitalist case for universal health care. For those just into tech, they also have a piece by OLPC.

Number of Inhabitants per doctor

Thanks for sending me the article and someone also sent me a link to an accessible copy here.

And remember, plants work wonders to curb indoor air pollution, which can be as bad or worse than outdoor ones. Here is a list of some of the best polluting fightin’ plants .

I used to have many many many plants but when you move nearly every year, you slowly have to get rid of them. last year in Canada we had one and we had to sadly part way with the plant that has been with us for 5 years.

But now that I have moved somewhere that will be my home for a bit, I am going to go a little nuts with the plants again. I just love having them. Now I need to find a good greenhouse in NYC that does not charge an arm and a leg.

Thinking of getting a new printer? Check this out first. Oh and if you have access to the original, can you please send to me??? My library does not have access to the journal and I may be getting a new printer soon so it is good to know which ones will not lodge particles into my lungs.

1. Being at debconf.

2. Having your blog entry slamming Blue Cross Blue Shield of NJ be on the first page of a google search using both the terms Blue Cross Blue Shield New Jersey as well as Blue Cross Blue Shield Horizon.

It is good to see the New York Times critically report on the (ab)use of cocktail psychiatric drugs used for treating children (and see this older New Yorker article The Pediatric Gap on the general lack of saftey testing for drugs given to kids).

What is a shame, however, is that the total lack of critical interrogation that there may be actual environmental causes for some of these problems and this, despite the publication of new studies from leading medical journals (such as Lancet) that finally are addressing the possibility that over 200 chemicals are causing havoc on brains, behavior, and thus life… (kinda a no brainer at some level even if we do need more specific studies…)

As the article on the chemicals reports, critics of they study say they Lancent authors are verging on scare-mongering, because there is no proof of a pandemic.. Well, we do need more proof but does that mean we should not study what is so understudied (and hard to study because how does one measure the effects of the synergistic combination of x number of chemicals over x many years??)

But as the NYTimes piece shows there does seem to be a pandemic in prescribing people and kids psychiatric medications. So possibly there is some connection to be made here??

And what I can’t understand is why it is that those within the medical establishment who are confronting kids with so called behavioral and those that are critics of overprescription are not asking what may be behind some of these problems…

While I agree that a percentage of the kids being put on drugs are totally fine and just being kids, I am sure there are many others who are suffering. And while some of these psych drugs may be an acceptable and necessary short term solution, this NY Times article should make us pause, and seriously pause, about the viability of these drugs as a realistic solution, given the horrible side effects they cause (just read the article). Even if some so think these are necessary, these are crude therapies.

I think we need another “Silent Spring” with an eye toward possible behavioral effects to shake people not out of an apathy, but from a myopia that seems satisifed with engaging only with symptoms and surfaces.

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So it has been a long while since I wrote about my mother and her Alzheimers/posterior cortical atophy. The news is not all that good. Now that she has been under this state for a number of years now, I am finding more and more of my female friends are under similar situations of having to take care, sometimes from afar, of an elderly parent. This summer I got to spend a few weeks with a friend whose mother is also slipping away due to neurogenerative disorder. We talked a lot about our and our mother’s lives. One thing we agreed wholeheartedly about was that with these types of illnesses, the past takes on a new found importance as “easier times.” Once the present starts to arrive on the scene of life and extreme dis-ease, the past seem a lot rosier than before, because well, usually things only seem to go one way: worse.

You retroactively long for the past, though it was experienced once as quite difficult but you realize that it was better than it is now. While my mom’s memory problems have not worsened that much, she has a host of new physical symptoms that really cut into her quality of life, making the past seem almost idyllic. And once you go through one or two of the phases, you can’t help wonder, constantly, how much worse will it get? In leaves you in quite an unmoored state of low-grade anxiety, because you just can’t have faith that things will get better. You only hope that the things will unravel slowly enough so that the shocks are somewhat easier to absorb for her, for me, for my sister. And all of this is hard, hard to watch someone go through, and hard to know that in some ways, this can only get worse because you just know rock bottom has not been reached and you start to wonder what will rock bottom even be? But perhaps what makes all of it far worse is how my mother is treated by ex-friends, by doctors, by society at large.

To have Alzheimer’s, is socially deadly, it is social death. Once people know of your condition, people start to treat you as if you are not really there, no longer a person, no longer able to cognize or much less understand the world around you. And indeed, it is silly to deny the existence of severe new limitations. But once you spend enough time with a person with Alzheimer’s, it is clear that they perceive (and really feel) a lot more than one first may expect. It is a grave mistake to put them behind the barbed wire of invalidity and non-being as I think seems to happen, almost automatically. Memory and language are not the only conduits for cognition yet we fetichize them so much so as they pivotal markers of “being,” that when they start slipping, we seem to mistakenly think the entire person goes with them.

This marking of non-being is everywhere. Most of her friends and family have dropped off the face of the universe; when I take her to church, “churchgoers” will make sure she takes the holy communion but otherwise treat her as if she can’t understand at all, instead of trying to going the extra mile to share in the ways she clearly can, and then there is her doctor. He is the worst.

He just tends to treat her as some clay lump, putting her in situations that clearly make her feel bad but of course, his medical gaze can’t register it at all. For example, every time she goes in, he makes her attempt to “draw” some squares and circles and houses…. And I am not sure why he does this because she has not been able to do it for years. When he makes her do it (and she gives in because well, you are supposed to follow doctors orders, right?) she is clearly embarrassed that she can’t do it, so what is the purpose? To confirm what is already plainly obvious, and remind her in BOLD EMPAHSIS of a new limitation?

He is not overly fond of me because I tend to be well-informed and as result finds me annoying and threatening. Last time my sister took her to the doctor, I had her bring a list of possible medications that may help control her excessive saliva, which is one of these new symptoms that is ruining her life. Though they were taken as suggestions (not as demands) and because he did not take this symptom seriously last time, he told my sister that just because “your sister has a PhD, does not mean she knows anything about medicine.” And he is right I don’t in the way he does, but it is by being well-informed that my mom was diagnosed in the first place and how we have averted other problems. I guess he selectively forgot that it was I who brought in the Olive Sacks article from the New Yorker on Posterior Cortical Atrophy that directly led to her diagnosis (after 2 years of trying to figure out why she could not see anymore and everyone just treated her as batty) and it was I who finally figured out that one of the medicines he had prescribed, Razadyne, was severely aggravating her saliva problem (he apparently never took her first concerns over her saliva very seriously, otherwise why would he prescribe a medication with saliva production as one of the known side-effects)…

Finally look around you… People with Alzheimer’s are rarely taken out of their house, if they still live there and surely not out of the nursing homes where many spend their last years. In fact, when my sister and I take her out (and we do quite a bit), you should just see the look on people’s faces. Their eyes light up, I think because, it is a rare sighting, and they just can’t believe how great it is that we have SACRAFICED to take her out. It is as if they saw Mother Teresa, back on earth, in some great act of benevolence (ok and she is pretty cute too, especially without her dentures).

She has about 2 friends who do make an effort to keep in touch. One is her oldest friend from Venezuela, who calls at least every month and then the other is an artist friend, who lives in PR and has known his fair share of tragedy, and as result is perhaps more empathetic. When they call or visit, she is overjoyed. Of course. You can joke with her quite easily and she loves to tell stories (though she get really frustrated at times when she has problems saying words). Not only is it a nice distraction, a form of entertainment, a moment of connection, making you forget the pains, psychic and physical, that saturate your life under Alzheimer’s but it is also a powerful social and moral message. It states that you still matter, are worthy even as other forces in life are tugging away at your being.

To be more generous, I understand why some of her friends, especially those who are older, avoid her. Her presence is a powerful signpost for their possible future. It is easier to exist in denial than to be empathetic, patient, and have to at some level confront a very existential question about a future that awaits all of us. It is like a more raw form of Sartre. But this is perhaps the very reason why sequestering those with this condition is a grave social mistake. It is worth facing it, contemplating it some, otherwise it will be impossible to forge more empathetic responses.

There are not many non-profit pharmaceutical organizations. In fact there is only one but now that they have recently announced that India approved a drug, Paromomycin IM Injection, to cure Visceral Leishmaniasis (VL), that they developed, it is more likely there will still be at least one, and perhaps more of these in the future.