Those with amyotrophic lateral sclerosis die, inevitably, a few years after the diagnosis, except for Dr. Hawking. There are numerous neurodegenerative diseases. Some probably never diagnosed. What’s the convincing evidence, if any, that Dr. Hawking has this particular one, and not one similar to it?
Are there any similar to it? Instances of remission in ALS patients are far from unheard of. Hawking’s just happens to be particularly long.
We know of many similar, such as Huntington’s chorea, Friedrich’s ataxia, spino-cerebellar degeneration, etc. Perhaps we don’t know them all. What are the clinical findings that establish Hawking’s as ALS, as opposed to the others?
Of course, we don’t have his medical charts, so no definitive answer can be had.
But death within a certain time frame is not an identifying characteristic of ALS. It’s a probable outcome, but it’s not what makes the diagnosis.
There are several specific things that can help adoctor diagnose ALS, as opposed to the laundry list of other things that could cause similar symptoms. I assume Hawking’s been seen by the best doctors in the field. While doctors are not even close to infallible, there have been many many decades for someone to make a good case that it’s not ALS, and that hasn’t (publicly, at least) happened.
It’s worth noting that the mortality from ALS is very often because of pneumonia or other infection. That kills a lot of patients before the motor neuron destruction causes respiratory paralysis. Excellent nursing care - the kind you might receive from round-the-clock services or by, say, marrying your nurse - can help to minimize the number of these dangerous infections, and get them treated when still relatively minor. ALS is one of those conditions where having a good nurse around is more important than having the best doctors, really. There’s only a single drug which may extend the lifespan; the rest of ALS care is all about symptom management and keeping the patient from getting pressure sores and infections and injuries.
How about “he probably has among the best doctors in the world and they say he has ALS”, Why is that not enough?
I think I recall hearing that he does have a less common variety of the disease, one that strikes at a younger age than is typical, and that has a longer prognosis for survival.
I think that our understanding of this constellation of conditions is still so limited that it’s mostly a matter of semantics what particular set of them we choose to include within the term “ALS”.
A logical fallacy of resorting to authority. Has our medical knowledge so complete now that we can say that because the “best doctors in the world” say he has it definitively means he does?
JKellyMap’s post states “our understanding of this constellation of conditions is still so limited…” His statement that he has a less common variety is informative, and, as he states, we can call it ALS, or we can call it something else. The point is that he does not, apparently, have the same disease we associate with Lou Gehring and others who carried that diagnosis.
Another factor is that, unlike many sufferers of ALS, he’s still able to live a rich life and pursue the calling he loves. Will to live can have a big effect.
And I’ve heard it speculated that what Lou Gehrig had might not, in fact, have actually been ALS.
But I think we can definitively say he had Lou Gehrig’s disease.
Scientific American ran an article about this
Sure. In fact I’m not sure I believe spinal cords exist at all. “Doctors” say they do, but why should I believe them?
Appeals to authority aren’t always fallacious. For instance, if it’s true that highly qualified doctors diagnosed him with ALS, and it’s true that qualified doctors can generally diagnose ALS, then pointing it out is a strong inductive argument.
I always find it interesting when someone seems so…blatantly personally “upset” by something like this. Are you angry or upset over Stephen Hawking being described as someone with ALS (the proper name for Lou Gehrig’s disease)?
The Scientific American article is a pretty good one in which an expert on ALS is interviewed. This expert says that he has patients with the disease, who contracted the disease early in life just like Hawking did and have lived into their 50s and 60s. He goes on to say people living that long to his knowledge are extremely rare, representing no more than a few percent of people with ALS. So Hawking is an outlier, but he isn’t the only outlier.
Are there different variations of ALS? According to that expert, yes. However, they’re all still considered ALS and I really don’t know if there is a factual answer to “should we consider that the same disease as Lou Gehrig had?” We can’t be 100% certain what disease Lou Gehrig had any more than we can be 100% certain that FDR had polio (there’s been speculation in recent years he may have had a different disease.) Whether or not Hawking has ALS appears to be a pretty straight forward “yes”, and according to an expert on diseases like ALS nothing about Hawking’s longevity suggests that he doesn’t have the disease–it would make him part of a small population of outliers but not the only member of that population.
The quoted expert goes on to say something that is fairly common knowledge to people who know much about ALS, that most death comes from respiratory failure or some infection related to being on a breathing machine. ALS is also a disease that a good portion of people “opt out” of surviving, by deciding not to be on a ventilator. At the end stages of the disease typically you have full mental capacity and ability but your body has essentially lost all somatic function so you’re basically a mind stuck in a body that will not respond to your will–that usually happens before the muscles controlling the lungs give out. That’s a sort of nightmare scenario for most people and unsurprisingly many of them opt to end treatment once all that is keeping them alive is a breathing machine.
I wish I could find it again, but in the early days of the internet (mid-90s) I read a website maintained by a guy who had been living with ALS since the 1970s. He had been on a ventilator for many years but described how there are a series of techniques that you can follow in terms of the care you receive that can make it highly likely you can live indefinitely with ALS. The guy maintaining the website said he had lost many “ALS friends” unnecessarily because of a lack of will or desire to go through that stage of the disease indefinitely. I always wondered what happened to the guy actually, I don’t think his website has been up for a long time. His opinion was that it was worth continuing to live because eventually a cure for ALS may be developed and as long as that possibility was out there it was worth waiting for, not a sentiment I think I’d have the willpower to follow up on but kind of admirable in a way that he did.
Does Stephen Hawking really have ALS?
I bet he’s faking it. Really. A normal dude submits a theoretical physics paper and all the other scientists are going to go over it with a fine-toothed comb looking for errors. But some guy “with” ALS shows up and hands in a paper? Anyone who challenges him is going to look like a complete ass. Instead it’s all “oh how wonderful you are!” and “oh, what a special paper on special relativity!” Condescending pricks.
I bet his papers are intense gobbledygook; pastiches of modern physics. Yet other scientists continue to praise his work and try and build on it because they’re too chickenshit to say otherwise. Science has been set back decades (if not centuries) because Stephen “Cartman” Hawking has been so prolific and no one has had the onions to call him on his bullshit.
In fact, they are only fallacious when the person isn’t an authority on the subject. I can invoke Einstein when discussing physics, but not when discussing Medieval Russian Literature or a medical diagnosis of ALS.
“Chicken pot, chicken pot, chicken pot piiiie!”
So you’ll take the Dope’s non-authoritative view, but not that of the “best doctor’s in the world”?
The fallacy of the “argument from authority” does NOT mean that it’s better to accept the opinion of non-experts than experts.
Exactly. Nor does the fallacy mean that “authorities” don’t know anything, so we may as well just guess.
Actually, the official definition of ALS is probably based on things that physicians can and do observe directly in their diagnosis. Hawking has symptoms X, Y, and Z, and therefore by definition has ALS. The real question is whether there might not be two or more relatively unrelated diseases which all have those same symptoms, and are all lumped in as ALS, but even if that’s so, you might be able to say (for instance) that Lou Gehrig and Stephen Hawking have different diseases, but you still couldn’t say that the statement “Stephen Hawking has ALS” is false.