It works, bitches
June 21, 2013 10:22 AM Subscribe
Thirty-nine year-old Andrew Johnson demonstrates the effect of Deep Brain Stimulation on the motor symptoms of Parkinson's Disease.
So, hopefully this gets widespread and more people get helped. But I know that if teenaged boys with Parkinson's start getting this, there's going to be a lot of "Party Time" videos showing up on YouTube. Some of them will involve trying to open beer cans, and seeing how much they will spray. They will be crass, and it will be kind of great.
posted by benito.strauss at 10:32 AM on June 21, 2013
posted by benito.strauss at 10:32 AM on June 21, 2013
Context for the title.
As for the video...wow. "Dramatic change" is underselling it by an order of magnitude. Seeing it switch off is stunning, but somehow the change when he turns it back on is even more so.
posted by Holy Zarquon's Singing Fish at 10:32 AM on June 21, 2013 [2 favorites]
As for the video...wow. "Dramatic change" is underselling it by an order of magnitude. Seeing it switch off is stunning, but somehow the change when he turns it back on is even more so.
posted by Holy Zarquon's Singing Fish at 10:32 AM on June 21, 2013 [2 favorites]
I love science.
posted by roomthreeseventeen at 10:35 AM on June 21, 2013 [5 favorites]
posted by roomthreeseventeen at 10:35 AM on June 21, 2013 [5 favorites]
Wow. My only thought is that he was brave to do that alone without (apparent) help.
posted by bonehead at 10:43 AM on June 21, 2013
posted by bonehead at 10:43 AM on June 21, 2013
Oh my God... that was so moving, distressing and completely awesome! I kept thinking, "OK, OK, we see how dramatically it works- turn it back on, quick!" A fantastic use of technology. And I assure you, Andrew Johnson, no one (with any intelligence) thinks you're faking.
posted by but no cigar at 10:45 AM on June 21, 2013
posted by but no cigar at 10:45 AM on June 21, 2013
The stimulator is so effective that when he turned it back on I untensed.
posted by figurant at 10:46 AM on June 21, 2013 [16 favorites]
posted by figurant at 10:46 AM on June 21, 2013 [16 favorites]
Holy Zarquon's Singing Fish: "Context for the title.
As for the video...wow. "Dramatic change" is underselling it by an order of magnitude. Seeing it switch off is stunning, but somehow the change when he turns it back on is even more so."
Yeah - I didn't realize how tense I had gotten watching it, until he turned it off, and I felt *my* body relax as instantly as he did. Palpable relief.
posted by symbioid at 10:49 AM on June 21, 2013
As for the video...wow. "Dramatic change" is underselling it by an order of magnitude. Seeing it switch off is stunning, but somehow the change when he turns it back on is even more so."
Yeah - I didn't realize how tense I had gotten watching it, until he turned it off, and I felt *my* body relax as instantly as he did. Palpable relief.
posted by symbioid at 10:49 AM on June 21, 2013
It's worth pointing out that the research into developing these devices required doing monkeys with MPTP, peforming open brain surgery on them, inserting these electrodes, and then recording the results. This is a result that has been decades in the making, and cost many animals their lives. This research has been controversial.
I'm saying this not to be all "animal research bad". My point is to remind that these sorts of breakthroughs and developments have a real cost attached.
The results are amazing, though. And we've only scratched the surface in understanding how the brain works. Assuming that human society doesn't eat itself, we'll be able to treat all sorts of debilitating neurological disorders in a few more decades.
posted by Pogo_Fuzzybutt at 10:51 AM on June 21, 2013 [20 favorites]
I'm saying this not to be all "animal research bad". My point is to remind that these sorts of breakthroughs and developments have a real cost attached.
The results are amazing, though. And we've only scratched the surface in understanding how the brain works. Assuming that human society doesn't eat itself, we'll be able to treat all sorts of debilitating neurological disorders in a few more decades.
posted by Pogo_Fuzzybutt at 10:51 AM on June 21, 2013 [20 favorites]
That was the best thing ever. Go, science!
posted by kbanas at 10:58 AM on June 21, 2013 [1 favorite]
posted by kbanas at 10:58 AM on June 21, 2013 [1 favorite]
This video made me happy and sad. Happy because it works, but sad because my dad is so afraid of undergoing the procedure that he has declined to do this twice. And seeing how horribly this disease affects him, my mother, and our family just makes me wish I could make him less afraid and more willing to do this.
So if you will excuse me, I have to go cry now.
posted by Kitteh at 11:20 AM on June 21, 2013 [5 favorites]
So if you will excuse me, I have to go cry now.
posted by Kitteh at 11:20 AM on June 21, 2013 [5 favorites]
Kitteh, has your dad had a chance to talk to others who have received the treatment? It might do something to allay his fears. I say this because doctors and lay people have very different ways of talking about medicine and procedures. And don't really use the same language (in general. Some practitioners, of course, are amazing at communicating effectively with patients!)
Either way, I'm so sorry that your family is having to go through this. I can't wait for the day we can have prevention for these things, instead of having to be reactive.
posted by bilabial at 11:24 AM on June 21, 2013 [2 favorites]
Either way, I'm so sorry that your family is having to go through this. I can't wait for the day we can have prevention for these things, instead of having to be reactive.
posted by bilabial at 11:24 AM on June 21, 2013 [2 favorites]
I wish I had a better word than WOW.
I am thrilled to see this, as I have lost a family member to Parkinson's, and I am completely terrified of the genetic predisposition in some remaining family members. Seeing that there is a way to control this is a huge relief. SCIENCE RULES!
Kitteh, I am so sorry your dad is having to deal with this. I hope he finds the strength to take the treatment. My best to your family.
posted by blurker at 11:39 AM on June 21, 2013
I am thrilled to see this, as I have lost a family member to Parkinson's, and I am completely terrified of the genetic predisposition in some remaining family members. Seeing that there is a way to control this is a huge relief. SCIENCE RULES!
Kitteh, I am so sorry your dad is having to deal with this. I hope he finds the strength to take the treatment. My best to your family.
posted by blurker at 11:39 AM on June 21, 2013
Famed London Chef Fergus Henderson had the same procedure done in the last few years.
I had no idea that the results could be so dramatic.
posted by helmutdog at 11:39 AM on June 21, 2013
I had no idea that the results could be so dramatic.
posted by helmutdog at 11:39 AM on June 21, 2013
This 2009 review suggests that the procedure is pretty effective compared to standard physical therapy and medication:
posted by nicodine at 11:41 AM on June 21, 2013 [1 favorite]
Patients who received deep brain stimulation gained a mean of 4.6 h/d of on time without troubling dyskinesia compared with 0 h/d for patients who received best medical therapy....but also risky.
Forty-nine deep brain stimulation patients (40%) experienced 82 serious adverse events. ... The overall incidence risk of experiencing a serious adverse event was 3.8 times higher (95% CI, 2.3-6.3) in deep brain stimulation patients than in best medical therapy patients.The video is impressive, and beautiful, and inspiring, but I imagine that I would have a very difficult time electing to choose surgery. I hope the surgery has become less risky since this paper.
posted by nicodine at 11:41 AM on June 21, 2013 [1 favorite]
Mr. Johnson also posted this on Reddit and went more in depth about his experience with Parkinsons. The device should continue to help him for another 7 to 10 years by his estimation before the progression of his condition exceeds what the device can compensate for.
He also points out that this only helps with his motor control symptoms. There's a lot more to Parkinsons than just that, unfortunately.
posted by ursus_comiter at 11:50 AM on June 21, 2013 [7 favorites]
He also points out that this only helps with his motor control symptoms. There's a lot more to Parkinsons than just that, unfortunately.
posted by ursus_comiter at 11:50 AM on June 21, 2013 [7 favorites]
Wow - amazing video. Brave, and I admire that he still has a sense of humour too.
posted by Kabanos at 11:56 AM on June 21, 2013
posted by Kabanos at 11:56 AM on June 21, 2013
Clinical studies are happening now with focused ultrasound to treat tremors. So far, results are promising.
My father is on the list of potential subjects, since he has essential tremors that are not responding to medication. I sympathize with Kittah. Dad is not interested in DBS. He says he would consider the ultrasound.
Last night, he skipped going to Family Night at his grandson's first Boy Scout summer camp because he was afraid he wouldn't find a place to could brace his arms so he could eat.
Dammit, Kittah, pass the tissues.
posted by I'm Doing the Dishes at 12:02 PM on June 21, 2013
My father is on the list of potential subjects, since he has essential tremors that are not responding to medication. I sympathize with Kittah. Dad is not interested in DBS. He says he would consider the ultrasound.
Last night, he skipped going to Family Night at his grandson's first Boy Scout summer camp because he was afraid he wouldn't find a place to could brace his arms so he could eat.
Dammit, Kittah, pass the tissues.
posted by I'm Doing the Dishes at 12:02 PM on June 21, 2013
Wow, there's a wiki devoted to explaining xkcd.
posted by Gelatin at 12:06 PM on June 21, 2013 [1 favorite]
posted by Gelatin at 12:06 PM on June 21, 2013 [1 favorite]
I have spent the last couple of days playing about with a new Logitech Harmony remote control. Over time more and more devices around the household have come under its magical sway - even the A/C. So I was watching Mr Johnson's video with a certain degree of curiosity about whether I could program the device to help - maybe as part of a macro that turns down the lights and puts on soothing music.
Here is a clip from a BBC documentary from a couple of years ago where a surgeon is talking the (conscious) patient through the DMP procedre. Amazing stuff.
posted by rongorongo at 12:20 PM on June 21, 2013
Here is a clip from a BBC documentary from a couple of years ago where a surgeon is talking the (conscious) patient through the DMP procedre. Amazing stuff.
posted by rongorongo at 12:20 PM on June 21, 2013
My dad is in his early 70s now and was also recently diagnosed with prostate cancer as well--he has had PD for nearly fifteen years--so I think we're a bit beyond the reach of DBS now.
posted by Kitteh at 12:21 PM on June 21, 2013
posted by Kitteh at 12:21 PM on June 21, 2013
My own "Holy crap!" moment with DBS occurred 8 years ago when I was in medical school and DBS was in the earliest stages of becoming a real option for patients. I was rotating through the neurology service of the hospital and we admitted a gentleman in his 60s with Parkinson's for the procedure. He was pretty debilitated--used a cane, obvious tremors, moved very slowly and with difficulty. He had the procedure that evening after I had already left for the day so I didn't get to see him afterwards.
The next morning I walked in to his hospital room to say hi and he was pretzeled upside down over his hospital bed, rooting around for the glasses he had dropped behind the headboard (which he found, triumphantly, just as I arrived). My jaw quite literally dropped and then we both just started laughing.
posted by The Elusive Architeuthis at 12:54 PM on June 21, 2013 [8 favorites]
The next morning I walked in to his hospital room to say hi and he was pretzeled upside down over his hospital bed, rooting around for the glasses he had dropped behind the headboard (which he found, triumphantly, just as I arrived). My jaw quite literally dropped and then we both just started laughing.
posted by The Elusive Architeuthis at 12:54 PM on June 21, 2013 [8 favorites]
I have an acquaintance who had this done. It wasn't as successful for him.
It worked at first -- to an alarming degree, but in the 2 years since, it seems to have "warn off", so to speak. He's still not as bad as he was pre-operation, but he seems to be heading in that direction.
posted by dobbs at 1:12 PM on June 21, 2013
It worked at first -- to an alarming degree, but in the 2 years since, it seems to have "warn off", so to speak. He's still not as bad as he was pre-operation, but he seems to be heading in that direction.
posted by dobbs at 1:12 PM on June 21, 2013
There’s a noteworthy comment about this video by a neurologist on /r/medicine.
posted by wachhundfisch at 1:57 PM on June 21, 2013 [4 favorites]
posted by wachhundfisch at 1:57 PM on June 21, 2013 [4 favorites]
Richard Thompson, the cartoonist whose Parkinson's forced him to quit his wonderful comic strip Cul De Sac, not only has had the treatment, but did some drawing while it was going on. Not quite good enough for him to return to work even with his usual loosy-goosy style, sigh, but we remain hopeful.
posted by oneswellfoop at 3:40 PM on June 21, 2013
posted by oneswellfoop at 3:40 PM on June 21, 2013
Summarizing wachundfisch's referenced comment, which is worth reading: the tremors displayed by Mr. Thompson are 'functional', meaning they are not directly caused neurologically by the Parkinson's. Not sure if that means that the DBS is irrelevant here, although that is kind of what I understand from it.
posted by jackbrown at 5:31 PM on June 21, 2013
posted by jackbrown at 5:31 PM on June 21, 2013
Sixty-six percent of the most popular movement disorder videos on Youtube are...fakish, according to this paper from the New England Journal of Medicine. And naturally all the Youtube commenters feel bound to recommend specific treatment plans, generally unadvisable, to the uploaders of the videos...
MeFi lesson for the day, ask a doctor, not Reddit/Youtube/MeFi, for advice on how to treat your medical condition.
posted by jackbrown at 5:39 PM on June 21, 2013
MeFi lesson for the day, ask a doctor, not Reddit/Youtube/MeFi, for advice on how to treat your medical condition.
posted by jackbrown at 5:39 PM on June 21, 2013
fakish
Your link specifically states that the tremors in the 66% you describe are not feigned, but rather psychogenic. It's not a matter of faking, even "ish", it's a matter of patients mistakenly misattributing the cause of their real symptoms. This is a complex area, and I don't think discussion is helped by implying, even inadvertently, that any particular individual may be deliberately misleading others about their symptoms and what they believe works as treatment. Your key point stands, of course, but I do think we need to be careful about how we approach this area, particularly because of its strong implications about the issue of patient autonomy.
posted by howfar at 6:44 PM on June 21, 2013 [5 favorites]
Your link specifically states that the tremors in the 66% you describe are not feigned, but rather psychogenic. It's not a matter of faking, even "ish", it's a matter of patients mistakenly misattributing the cause of their real symptoms. This is a complex area, and I don't think discussion is helped by implying, even inadvertently, that any particular individual may be deliberately misleading others about their symptoms and what they believe works as treatment. Your key point stands, of course, but I do think we need to be careful about how we approach this area, particularly because of its strong implications about the issue of patient autonomy.
posted by howfar at 6:44 PM on June 21, 2013 [5 favorites]
fakish.
Good point, that was bad word choice. What I meant is that they aren't the neurological condition the uploaders claim them to be.
Doesn't mean the movements are faked at all of course. But the guy making the movements and claiming it is his Huntington's Chorea/Parkinson's/ETC is wrong about what is causing the movement in 66 percent of the cases, according to the article. So as a demonstration of Huntington's/Parkinson's etc they are wrong.
posted by jackbrown at 6:48 PM on June 21, 2013
Good point, that was bad word choice. What I meant is that they aren't the neurological condition the uploaders claim them to be.
Doesn't mean the movements are faked at all of course. But the guy making the movements and claiming it is his Huntington's Chorea/Parkinson's/ETC is wrong about what is causing the movement in 66 percent of the cases, according to the article. So as a demonstration of Huntington's/Parkinson's etc they are wrong.
posted by jackbrown at 6:48 PM on June 21, 2013
Indeed. I think that, more broadly, the problem is the familiar one of "data" not being the plural of "anecdote". The majority of the videos seem to illustrate people's genuine subjective experiences, but even if every single one were a demonstration of the effect of a particular treatment on the condition it identifies, they would still provide no sound basis for judgement of the likely effectiveness of that treatment. Powerful images shape narratives, but narratives are rarely, if ever, a key component of good treatment selection (although they are frequently a key part of treatment itself, which is one thing that these videos DO illustrate).
posted by howfar at 7:06 PM on June 21, 2013
posted by howfar at 7:06 PM on June 21, 2013
Sixty-six percent of the most popular movement disorder videos on Youtube are...fakish, according to this paper from the New England Journal of Medicine. And naturally all the Youtube commenters feel bound to recommend specific treatment plans, generally unadvisable, to the uploaders of the videos...
In comparison to our understanding of say... metallurgy, our understanding of anything neurological is at the bang rocks together and make them sharp stage.
The research to get this far was comprised of training NHP (Non Human Primates) to do a task (grab a piece of fruit, look at a spot on a screen, etc), and then giving them Parkinsons via MPTP. After that, they had their heads cut open and parts of their skull removed. Until they died from the inevitable brain infection, a technician would insert electrodes and shock them with varying voltages until they found the spot and current that made the apparent symptoms not quite so bad. Then they would rinse and repeat until they had confidence in the targetting and neuroscience that it might work in humans.
And it works sorta - the FDA approved it. And although the success rate is far below 100% there are waiting lists to have this done.
Which is funny. Because, at the end of the day, what we are doing is sticking wires in the brain and shocking the shit out of it. It is every bit as barbaric as it sounds and really is only a few steps removed from Trepanning in terms of actual medical science. It's disturbingly rudimentary.
But people are absolutely addicted to the idea of feeding themselves and tying their own shoes.
It's crazy. I know.
posted by Pogo_Fuzzybutt at 11:13 PM on June 21, 2013
In comparison to our understanding of say... metallurgy, our understanding of anything neurological is at the bang rocks together and make them sharp stage.
The research to get this far was comprised of training NHP (Non Human Primates) to do a task (grab a piece of fruit, look at a spot on a screen, etc), and then giving them Parkinsons via MPTP. After that, they had their heads cut open and parts of their skull removed. Until they died from the inevitable brain infection, a technician would insert electrodes and shock them with varying voltages until they found the spot and current that made the apparent symptoms not quite so bad. Then they would rinse and repeat until they had confidence in the targetting and neuroscience that it might work in humans.
And it works sorta - the FDA approved it. And although the success rate is far below 100% there are waiting lists to have this done.
Which is funny. Because, at the end of the day, what we are doing is sticking wires in the brain and shocking the shit out of it. It is every bit as barbaric as it sounds and really is only a few steps removed from Trepanning in terms of actual medical science. It's disturbingly rudimentary.
But people are absolutely addicted to the idea of feeding themselves and tying their own shoes.
It's crazy. I know.
posted by Pogo_Fuzzybutt at 11:13 PM on June 21, 2013
Yeah, that video is not at all typical or convincing for Parkinson's.
I'm a neurologist with an interest in movement disorders. Diagnosis of movement disorders based on a video is something we're trained to do. I've attend the video movement disorders video rounds at the American Academy of Neurology meeting, chaired by Dr Lang, one of the authors of the NEJM article linked upthread about functional movement disorders on YouTube.
The neurologist on Reddit says he's not doubting the diagnosis based on decreased blink rate and masked facies, but I'd disagree with that too. His voice isn't hypophonic. He has normal spontaneous movements of the upper face when he's describing his dystonia (head tilted left). He has normal spontaneous movements of the limbs such as when he scratches his forehead (early in the video, when he says "when I was 35"). He looks completely normal with the DBS turned on. DBS usually has most of its benefits for tremor or for bradykinesia (slow movements, the origin of facial masking and hypophonic speech in Parkinson's), not for both at the same time, because the anatomic targets are different, and the benefit is usually incomplete, not perfect.
He could still have Parkinson's, but I'd say there's no particular reason to expect that based on the video.
Functional / psychogenic movement disorders sometimes arise in patients with organic movement disorders who are successfully treated with medications or DBS. But they can also develop in otherwise healthy people who don't have an organic neurological disease (in the sense of damaged brain tissue). Functional movement disorders are quite common in young people and are often misdiagnosed, even by neurologists.
DBS is expensive and at least somewhat risky over the long run, so it's important to select patients carefully. Parkinson's is usually a clinical diagnosis (except in the relatively few cases of a known genetic cause), where the physical exam leads to the diagnosis and there are no confirmatory tests available. In a case like this where there would be good reason to double-check the diagnosis, a F-Dopa PET scan might have been helpful. PET scans are used mostly for research purposes but there'd be a definite clinical value in this case.
The danger of this video is that it will encourage patients with psychogenic movement disorders to believe they need surgery to get better. DBS would probably help some of them, but not for the reasons they think. Surgery is the most powerful placebo.
If you're wondering after all of this what DBS actually does for patients with Parkinson's, here's a video I found convincing. Caveat: it's Medtronic promotional material.
posted by Plasmon at 5:14 AM on June 22, 2013 [2 favorites]
I'm a neurologist with an interest in movement disorders. Diagnosis of movement disorders based on a video is something we're trained to do. I've attend the video movement disorders video rounds at the American Academy of Neurology meeting, chaired by Dr Lang, one of the authors of the NEJM article linked upthread about functional movement disorders on YouTube.
The neurologist on Reddit says he's not doubting the diagnosis based on decreased blink rate and masked facies, but I'd disagree with that too. His voice isn't hypophonic. He has normal spontaneous movements of the upper face when he's describing his dystonia (head tilted left). He has normal spontaneous movements of the limbs such as when he scratches his forehead (early in the video, when he says "when I was 35"). He looks completely normal with the DBS turned on. DBS usually has most of its benefits for tremor or for bradykinesia (slow movements, the origin of facial masking and hypophonic speech in Parkinson's), not for both at the same time, because the anatomic targets are different, and the benefit is usually incomplete, not perfect.
He could still have Parkinson's, but I'd say there's no particular reason to expect that based on the video.
Functional / psychogenic movement disorders sometimes arise in patients with organic movement disorders who are successfully treated with medications or DBS. But they can also develop in otherwise healthy people who don't have an organic neurological disease (in the sense of damaged brain tissue). Functional movement disorders are quite common in young people and are often misdiagnosed, even by neurologists.
DBS is expensive and at least somewhat risky over the long run, so it's important to select patients carefully. Parkinson's is usually a clinical diagnosis (except in the relatively few cases of a known genetic cause), where the physical exam leads to the diagnosis and there are no confirmatory tests available. In a case like this where there would be good reason to double-check the diagnosis, a F-Dopa PET scan might have been helpful. PET scans are used mostly for research purposes but there'd be a definite clinical value in this case.
The danger of this video is that it will encourage patients with psychogenic movement disorders to believe they need surgery to get better. DBS would probably help some of them, but not for the reasons they think. Surgery is the most powerful placebo.
If you're wondering after all of this what DBS actually does for patients with Parkinson's, here's a video I found convincing. Caveat: it's Medtronic promotional material.
posted by Plasmon at 5:14 AM on June 22, 2013 [2 favorites]
I didn't realize how tense I had gotten watching it, until he turned it off, and I felt *my* body relax as instantly as he did. Palpable relief.
I was struck by this comment. In Awakenings, Oliver Sachs describes a case of severe Parkinsons in which the symptoms were alleviated for one patient when she held hands, and even danced, with a caregiver who was Parkinsons free. I actually experienced the same effect when I offered my hand to one affected patient - she could move much more freely as long as the connection was maintained.
It seems the effect works in reverse as well. There is a something we could learn about empathy, touch, and proprioception here.
posted by not_that_epiphanius at 12:22 PM on June 22, 2013
I was struck by this comment. In Awakenings, Oliver Sachs describes a case of severe Parkinsons in which the symptoms were alleviated for one patient when she held hands, and even danced, with a caregiver who was Parkinsons free. I actually experienced the same effect when I offered my hand to one affected patient - she could move much more freely as long as the connection was maintained.
It seems the effect works in reverse as well. There is a something we could learn about empathy, touch, and proprioception here.
posted by not_that_epiphanius at 12:22 PM on June 22, 2013
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posted by The 10th Regiment of Foot at 10:28 AM on June 21, 2013 [3 favorites]