Woman with dystonia can only walk backwards


Boing Boing guestblogger Connie Choe is a health and culture writer by day and a professional kimchimonger by night.

This video about a young woman who suffers from dystonia and can only walk backwards is really interesting, but I offer it up with a sprinkling of disclaimers. 1. It's a clip from the evening news, so naturally it reeks of sensationalism. 2. This shouldn't necessarily discourage you from getting the flu vaccine. 3. Some numbskull tweaked about a second of this video so that it sounds like the reporter is saying this should discourage you from getting the flu vaccine.

If you want to explore some neurological case studies that represent patients as actual people, rather than as tragic spectacles, The Man Who Mistook His Wife for a Hat by Oliver Sacks is a great read.

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"Flu Shot Disabled Beautiful Cheerleader"

Because it's more tragic when bad things happen to *beautiful* people.

While this is clearly not funny for our cheerleader, I couldn't stop laughing at how ridiculous the news report's tone was in contrast to what we were watching on screen. I love watching the reporter run along with the cheerleader in his attempt at being objective and detached. Just reporting the facts, m'aam!

Are you sure it's not the ketamine?

I'm sorry. I coudn't help myself.

And how did they determine that this 1 in 100,000,000 occurrence is even caused by the flu shot?

It could have been anything.

The fact that she is seemingly 'normal' when running is so baffling. It's really unfortunate and sad for her but it really shows how fascinating yet mysterious the brain is.

For a balanced look at the issue can we get a video of a reporter running along side the deceased? Oh right, we can't, cause they're dead.

I don't know if it's more tragic, but it may be more disturbing. Watching some one who looks like they should be privileged struggle is actually very disturbing to me. I made a joke but I really do feel bad for this girl.

They tried to do a compelling story on someone who didn't get the vaccine, but they were dead.

My heart goes out to her, but, statistically, cheerleading can be far more dangerous then the flu shot.

Google "Cheerleading Injuries"

http://www.google.com/search?q=cheerleader+injuries&rls=com.microsoft:en-us&ie=UTF-8&oe=UTF-8&startIndex=&startPage=1

For real: correlation is not causation, right? (So says Tdawwg, two days after a flu shot.... Yikes!)

Really sad that that would happen because of something you do to PREVENT illness. In all seriousness, I wonder if she'll become an ultra marathon runner? Between attempts to treat or cure her condition it could be a good way to go with the flow.

Even if there is any merit to the theory that the flu shot is what disabled this unfortunate woman, I doubt that the news program is planning to dedicate a proportionate amount of time to all the individuals who died from not getting the vaccine.

This just reeks of onion!

DAMN THAT GIRL CAN KRUMP!

This looks like it behaves very similarly to spasmodic dysphonia, in that there are multiple different centers of the brain responsible for the same functions in different contexts, only some of which become impaired.

In the case of spasmodic dysphonia it affects the vocal cords make speech difficult or impossible - but only certain kinds of speech. Someone incapable of public speaking might still be able to whip-off nursery rhymes no problem (a la Scott Adams, Dilbert author).

I wonder if some kind of reframing therapy would be helpful - a way of invoking unaffected brain regions to compensate for other activities?

Notice the total lack of medical people in the news article? That strikes me as being a very good sign that the research basicly consisted of: "so, what do you think caused this?" "i had a flu shot a few days earlier" "well, that must have been it!"

There is no link between dysphonia and flu shots.

Inside Edition is not a News program

This is a bizarre and truly interesting disorder. I keep hearing that book mentioned, and I've hit a tipping point where I now have to buy it.

I got a flu shot- and ten days later, I was shocked to find that NOTHING HAPPENED! Alert the media! Actually, I've lost weight, and have been feeling better, and have had more energy since since the shot. This has no link of course, to my new exercise regimen. That would be silly.

On the show, they were careful to repeat that the dystonia came up "ten days after the flu shot," so they're only describing the correlation, not the causation. ...Except why bring it up other than to imply causation?

Actually this doesn't even have correlation, just coincidence.

The "vaccines cause autism" myth has correlation on its side only because autism symptoms become apparent around the same age that children usually get vaccinated. Dystonia doesn't even have that.

Even if there was a cause and effect link, it is extremely rare. The hysteria about vaccines is so ridiculous, and it's amazing how vehement people get in defending their position. Whenever I hear someone spouting this nonsense, I tell them about the few people who have died in their cars due to being trapped by their seat belts. "So whatever you do, don't wear a seat belt!" Then I tell them that it's not a very apt comparison, because there is actual proof that those people died because of seat belts.

Then they kick me out of the Whole Foods store. Again.

If they had talked to a medical expert, they'd find out that the University of Maryland uses Ms. Jennings' disorder as an example of psychogenic dystonia - there is no physiological reason for her symptoms.
http://www.examiner.com/x-13791-Baltimore-Disease-Prevention-Examiner~y2009m10d16-Woman-claiming-she-acquired-dystonia-from-a-flu-shot-may-have-it-all-in-her-head

spiderking - you mean, if they had talked to a medical expert who had never examined the patient? Those people are as guilty of making stuff up as the news story is.

How many times did they have to mention that she was "beautiful" or "pretty"? As if it wouldn't have been tragic otherwise. Because such a thing happening to the average looking person (or an older man, etc), wouldn't have been so bad....

I hate the news.

What bothers me is the government-granted legal immunity to all pharms involved in the manufacturing and distribution. They cannot be found at fault, while producing new product as fast as they can with as little testing as possible. (Testing costs money and time, and we need another billion doses yesterday!)

I'm really not one of the conspiracy theorists, or believe any of the links to autism or cancer or any other such nonsense, but I do believe in the power of cold, hard cash.

You take away regulation and immunity from legal recourse, you end up with low-bidder product. And I trust that about as much as I trust Chinese drywall.

A medical expert who never examined the patient is still a bit better than a non-expert who doesn't know what examining a patient even entails.

What is the deal with this anti-vax movement? If it weren't for all the imuno-compromised, infants, and people who are resistant to the vaccines it would be funny to watch all these people die of smallpox or measles because it's so much safer than that evil medicine they want to put in you.

Well, it's not so mysterious. You know what it is that allows the anti-vaccination crowd to be so complacent about the threat of disease?

That's right. Vaccines.

"Then they kick me out of the Whole Foods store. Again."

LOL! But worth it, I say!

There's a reason for this. No one would produce vaccines otherwise, because get crazy + litigious whenever something bad happens with a vaccine, manufacturing defect or not. There's only a handful of vaccine makers now, there used to be more, and it's because of the lawsuits.

There is however a fund setup so that if you do get screwed up from a vaccine you get compensated. Since people in this country can't go 5 minutes without suing anyone this is the best we get.

"Then they kick me out of the Whole Foods store. Again."

I live in Madison, WI so this was 2x as funny!

I have nothing against vaccines and don't think this girl's situation is a reasonable deterrent for getting a flu shot.

That said, I think there is something really worrisome about neurological disorders being diagnosed over a video footage. If I ever wake up with some weird, life-changing impairment, I sure hope the 'experts' will run the appropriate battery of tests before declaring it's in my head.

The report obviously suggests a direct link between a flu shot and the woman's dystonia. I'm sure that's not backed-up by any medical assessment, but throwing in the vaccination question makes the story more controversial and, sad to say, get more exposure just like this.

According to the Mayo Clinic website:

"Doctors don't know what causes most cases of dystonia, but it has been linked to communication problems between nerve cells located in the basal ganglia — an area of the brain involved in initiating muscle contractions.

While many cases of dystonia have no obvious cause, the disorder sometimes results from an underlying neurological problem, such as:

* Traumatic brain injury
* Stroke
* Brain tumor
* Oxygen deprivation
* Infections, such as tuberculosis or encephalitis
* Reactions to certain drugs
* Heavy metal or carbon monoxide poisoning"

Oh crud! I'm so sorry. I'm retarded and sleepy from work and I hit report instead of reply! It was an accident I swear!!!!

Now that I told ya a little bit about myself
let me tell ya a little bit about this dance
It's real easy to do - check it out:

First I limp to the side like my leg was broken
Shakin' and twitchin' kinda like I was smokin'
Crazy wack funky
People say ya look like M.C. Hammer on crack, Humpty
That's all right 'cause my body's in motion
It's supposed to look like a fit or a convulsion
Anyone can play this game
This is my dance, y'all, Humpty Hump's my name
No two people will do it the same
Ya got it down when ya appear to be in pain
Humpin', funkin', jumpin',
jig around, shakin' ya rump,
and when a dude a chump pump points a finger like a stump
tell him step off, I'm doin' the Hump.

what a tragedy, i feel so bad for this young woman. my family is irritated with me for refusing flu shots (as always) and the odds of this happening appear astronomical enough to not be a threat, but i've always refused flu shots, since I haven't had a virus in nearly 15 years now

Quoted from memory, one hopes. :P

I think the Redskins should let her cheer with the other cheerleaders. Tape some pom poms to her hands, throw her in the air mid-fidget--dystonia or no, I'd clap.

For all those doubting that it could be the vaccine: I'm thinking it was some kind of Guillan-Barre thing where she had an autoimmune reaction that went overboard and ate her nervous tissue. It happens sometimes, but it's even more likely to happen as a result of actually having the flu than as a result of vaccination.

Musician's dystonia is the only one I'm familiar with. Assuming it's a variation on the same phenomenon, I've never heard of it caused by anything except strenuous, long term practicing coupled with an unlucky brain wiring.

It's not massively uncommon -- certainly nowhere near the 1 on 100,000,000 occurrence suggested in a previous posting (in which case it would basically never happen -- how many of us are professional musicians who practice obsessively after all?) It happened to the guitarist in my jazz trio some years ago, and it ended his career. It only effects his guitar playing, though -- he's learning piano and pedal steel at the moment with no ill effects -- and it certainly doesn't seem to effect anything else he does with his hands like writing and typing.

It's a neural problem that causes the brain to send signals to muscles to make opposing muscles work at the same time, thus fighting against each other, but it seems targeted at very very specific actions, and it doesn't just pop out of nowhere -- you have to push yourself over the brink with strenuous activity. And, unfortunately for my friend, there really doesn't appear to be any consistent, effective, and permanent cure.

Oliver Sacks has a chapter about it in his utterly fascinating book "Musicophilia".

By bet is that the cheerleading had more to do with this condition than the flu shot. That and bad, bad luck.

Task-specific dystonia is just one kind. For example, my sig other's 8-year-old cousin was born with dystonia due to a combination of genetics and pregnancy complications. Where and how it is expressed varies as well - with said cousin, it's throughout his body no matter what he's trying to do, and he basically needs 24/7 care. With task-specific like you were talking about, it's more focused on specific body parts and often only comes out during that specific activity.

BJN did a pretty good job of covering the known reasons for adult onset above.

I agree that there's nothing to indicate that a flu shot could cause dystonia, but I think it's hasty to judge how this girl's came about.

got my flu vaccine this week and can still only walk effectively 'frontwards'. i want my money back.

Oh, how nice it is to see a sane discussion of this.

I'm studying cognitive science (includes neuroscience) and get quite easily fed up with the sensationalistic discussion about stuff like this in most places. Boinboing commenters seem like an oasis of sanity.

The causal link to her vaccination doesn't even reach the level of tenuous.. and the newscoverage is lousy, omitting any look into what specialists think. But that is par for the course.

jtegnells comment above is quite interesting (as are many others) and this disease does seem interesting for how much it seems to affect individuals who rely on highly specialized and precise movements

As a world-class research neurologist, I can tell you that, after I've read the Journal of the AMA, Lancet, The Massachussetts Neurological Review, The Journal of Modern Neurology, Neurology Today, Neurology People!, Neurology 'N' You, Easy 15 Minute Recipes for Neurologists, The Big Book of Neurology Word-Find, and Neurology Big 'Uns, I make sure that I catch Inside Edition for all of the late-breaking medical insights I need.

I have actually seen multiple news stories on this woman, the side effects started less than 10 days after the shot and gradually grew into this. She was diagnosed at John Hopkins with Dystonia not by the staff at Inside Edition. She is heading to the Mayo Clinic to see if they are able to help reverse it or treat this.

Completely independently of all the vaccine bollocks, this dystonia is, hands down, the craziest fucking thing I've ever seen. I feel very sorry for her, but damned if I couldn't stop watching the symptoms switch on and off.

The Ministry of Silly Walks probably has a grant for her.

Sorry, I've been watching a lot of Monty Python.

I encourage everyone out there to get every vaccination known to man, but be aware there can be complications far worse than a mild flu.

I notice that SHE says she got it because of a flue shot. I didn't see a doctor or any medical professional being interviewed.

"Anthropologist on Mars" is another by Oliver Sacks that's a great read

Watched the video with mute on, and I reckon I lasted 10 seconds before 'Yakkity Sax' kicked in in my head. I bet I'm not alone!

Conversion

"Dystonia" is the cause? But a flu shots cannot get past the blood-brain-barrier...

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