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I thought this was interesting and worthy of comment. Robin Williams widow, Susan Williams, wrote about his disease. It appears he had phenotypic PD with plenty of non-motor features, and pathologic diagnosis of DLB. This makes the dx of PD partly correct.
My first comment is that I'd expect to have seen this in a newspaper or magazine. There is so much worthy science that should be published but doesn't make high tier journals (and much junk that does). Neurology no longer publishes case reports. But they published a caregiver report? And yet I'm posting about it, so there's that.
My other comments are unkind. Now Ms. Williams is going to devote herself to brain diseases. This is great. I actually do the same. But does it matter that she's only doing it after she sees the bad things first hand? I think it does. There's a certain narcissism to caregivers who get ultra involved, donate time and money to help after something bad befalls them. I always think it highly unseemly that the hospitals take such advantage of these people for fund raising. Sick sad world.
And then there's the writing. I'll be kind here: not great. She really needed an editor (but who would confront her? The a common problem with celebrities getting involved: they are seen as suckers or marks to be coddled, not as partners). "The Terrorist?" In another time this would have been the demon, the highly malevolent being that possessed one. And this sort of overly emotional writing, which is found throughout the piece, falls utterly flat. Of course terrible writing is the case in most journal articles. But I considered this piece from the perspective of a mild DLB patient - I would rationally consider terminating my life. And can you imagine reading it from the perspective of a caregiver - most distressing. So this article, which was actually sent to me by a caregiver group, could cause some real harm.
What's interesting to me about Robin Williams is the he knew his way around a parkinsonism. He played Oliver Sachs in Awakenings. Apparently they got to know each other pretty well and would go for swims together. The movie was released 25 years ago. What the William's 25 years of inaction and brain disease say about the intersection between art, medicine, and compassion? Artists of all types try to tell us that art can inform us in deeper ways, make us more compassionate. And I buy this. But sometimes it's just about pure entertainment, or just about a paycheck. It certainly seems acting with people playing parkinsonisms wasn't sufficient for the Williams family to get involved in charities or lend their hand to a brain disease. Celebrities who help raise awareness and funds for different diseases can do a lot of good, which is a sad reflection on our culture.
The upside of all this is more awareness of a terrible disease, which is obvious and doesn't really lend itself to further comment.
My first comment is that I'd expect to have seen this in a newspaper or magazine. There is so much worthy science that should be published but doesn't make high tier journals (and much junk that does). Neurology no longer publishes case reports. But they published a caregiver report? And yet I'm posting about it, so there's that.
My other comments are unkind. Now Ms. Williams is going to devote herself to brain diseases. This is great. I actually do the same. But does it matter that she's only doing it after she sees the bad things first hand? I think it does. There's a certain narcissism to caregivers who get ultra involved, donate time and money to help after something bad befalls them. I always think it highly unseemly that the hospitals take such advantage of these people for fund raising. Sick sad world.
And then there's the writing. I'll be kind here: not great. She really needed an editor (but who would confront her? The a common problem with celebrities getting involved: they are seen as suckers or marks to be coddled, not as partners). "The Terrorist?" In another time this would have been the demon, the highly malevolent being that possessed one. And this sort of overly emotional writing, which is found throughout the piece, falls utterly flat. Of course terrible writing is the case in most journal articles. But I considered this piece from the perspective of a mild DLB patient - I would rationally consider terminating my life. And can you imagine reading it from the perspective of a caregiver - most distressing. So this article, which was actually sent to me by a caregiver group, could cause some real harm.
What's interesting to me about Robin Williams is the he knew his way around a parkinsonism. He played Oliver Sachs in Awakenings. Apparently they got to know each other pretty well and would go for swims together. The movie was released 25 years ago. What the William's 25 years of inaction and brain disease say about the intersection between art, medicine, and compassion? Artists of all types try to tell us that art can inform us in deeper ways, make us more compassionate. And I buy this. But sometimes it's just about pure entertainment, or just about a paycheck. It certainly seems acting with people playing parkinsonisms wasn't sufficient for the Williams family to get involved in charities or lend their hand to a brain disease. Celebrities who help raise awareness and funds for different diseases can do a lot of good, which is a sad reflection on our culture.
The upside of all this is more awareness of a terrible disease, which is obvious and doesn't really lend itself to further comment.