Quiz: Name one person who has the disorder "Ice bucket challenge" is trying to help

[Senegoid]

@syncope

My mother had ALS. She lost the ability to swallow safely early on, so she had a feeding tube inserted. Eventually, the muscles that allowed her to breathe stopped working, so she suffocated and died. It took a long time and unimaginable suffering to get to that point.

In ALS, the sufferer’s mental acuity remains intact, even though he can no longer speak or move. My mom could still scream, though, almost to the end.

I’m an ICU nurse so I see people die from lots of things. In my opinion, ALS is the worst disease.

Is there palliative treatment for ALS patients towards the end?

[Cazzle]

I recently began to suspect my grandmother died of it. She had an unnamed neurological condition that started as a stutter and eventually robbed her of the power of speech, and she had uncontrollable outbursts of laughter that I now know are called the Pseudobulbar effect. In time she became too unsteady on her feet to walk, and lost the use of her arms. She just withered away. It was absolutely awful.

In an obviously unrelated case, my aunt’s dog (dalmatian) was diagnosed with motor neurone disease during Grandma’s final illness. We never thought to ask Grandma’s doctors if it might be what she had.

The first two public figures to come to mind were Stephen Hawking and Lou Gherig (the latter because of references to Lou Gherig’s disease, which I had to look up to understand it was the same thing the dalmatian had).

[JKellyMap]

@JKellyMap

My stepfather.

(I was about to nominate this thread for “most misspellings this month,” but it turns out it’s acceptable to write “neurone” in the UK, so that takes care if about half the misspellings!)

…takes care of…

Gaudere strikes again.

[lisiate]

Former Springbok Joost van der Westhuizen. Arguably one of the best half-backs of his generation. Now he’s wheel chair-bound and can’t even eat without assistance.

[chrisk]

whoops

[Lonnie]

“There has been some criticism that the ‘ice bucket challenge’ has failed to properly raise awareness of the intended issue.”

Good. Criticism by possibly arm-chair critics helps to raise awareness too.

Thankfully, I don’t know anyone with the disorder. But I know many people who also are not involved personally but who tried to help by posting their video of the challenge and by challenging others.

How many critics took the challenge is an unknown.

[Aspidistra]

@CrazyCatLady

In all fairness, it seems like the bulk of examples are people the posters who mentioned them could have already told you had ALS, without the ice bucket thing. If all the people participating in this thread could name one thing they’ve learned about ALS due to the ice bucket challenge, I’d buy that it’s an unequivocal success at raising awareness. As it is, it’s an unequivocal success at raising money, but of fairly dubious success at raising awareness.

Isn’t raising money more important than raising awareness in any case? Money can be used to research a cure.

[syncope]

@Senegoid

Is there palliative treatment for ALS patients towards the end?

Just sedatives and morphine. In my mom’s case, she chose not to go onto a ventilator, which only would have prolonged her misery. She was on a BIPAP mask, which helped her to breathe until those muscles stopped working. At the end, the carbon dioxide in the blood builds up until the person becomes unconscious and stops struggling.

[Labrador_Deceiver]

@CrazyCatLady

In all fairness, it seems like the bulk of examples are people the posters who mentioned them could have already told you had ALS, without the ice bucket thing. If all the people participating in this thread could name one thing they’ve learned about ALS due to the ice bucket challenge, I’d buy that it’s an unequivocal success at raising awareness. As it is, it’s an unequivocal success at raising money, but of fairly dubious success at raising awareness.

Nope. When I first heard of the ALS ice bucket challenge, my wife and I were assuming it had something to do with Leukemia. The same goes for a lot of other people I spoke with as this unfolded. Before this started, I doubt seriously that a significant number of participants could have told you much about how many people have it, how many are diagnosed with it every year, how quickly they die from it, etc. it has been an enormous success at raising general awareness of the disease.

[Lancia]

Lou Gehrig

Stephen Hawking

The guy who played the prosecutor in My Cousin Vinny

[Sampiro]

One of my favorite high school teachers, way too damned young.

[missred]

Former Tennessee Titan Tim Shaw.

[ZipperJJ]

Anyone Who Is Suffering Through What Lou Gherig Suffered Through is who I donated for. It’s hard enough watching people I love deal with MS. ALS is like…the next worst level.

Just cuz I don’t know anyone personally who is afflicted doesn’t mean I can’t do a weird stunt and give some money to their org.

[etv78]

Ezzard Charles
Catfish Hunter
Kevin Turner

[42fish]

David Niven
Charles Mingus

[Green_Bean]

David McClain. He’s just some guy in Texas who has ALS and did the challenge. I found the video very touching.

I’m doing it tomorrow.

[RickJay]

A beloved comic in the Toronto scene, Jo-Anna Downey. The first thing ALS took from her? The ability to speak. Yeah, I’ve donated a few bucks.

[Bullitt]

Two years ago I posted in MPSIMS about a long-time friend whose wife had the affliction. She died within two months of being diagnosed.

In that thread, fellow Doper mo50 shared (here) that his wife died of it 10 years before.

ArrMatey!'s father has it (here).

Dano83860’s friend and coworker, too. Here.

Loach’s aunt.

notsoheavyd3’s mother.

Mama Zappa’s grandfather.

Scotticher’s best friend’s husband.

In 22 posts in that thread, many Dopers shared who they knew had it. It’s a terrible disease.

[Gatopescado]

A good friend of mine was recently diagnosed, so keep dumpin’ that ice water, cause there is still a chance!

[DChord568]

@Eureka

I was seriously surprised to hear how small the number of people estimated to be suffering from the disease at present is.

A column by Los Angeles Times commentator Michael Hiltzik that was reprinted in my local paper today touches on this.

He acknowledges (as do I) how devastating the disease is for those who suffer from it and their families, but goes on to point out:

But ALS is also a rare disease, which is defined by the federal Rare Diseases Act of 2002 as one affecting fewer than 200,000 patients nationwide. The CDC estimates the prevalence of ALS in the U.S. at any one time at about 12,000 persons. The ALS Association says 30,000, but hasn’t responded to my inquiry about the discrepancy.

Even taking the ALS Association figure, the prevalence of the disease is far outstripped by many other conditions that also could benefit from more research funding. These include Alzheimer’s (an estimated 5.2 million patients in the U.S.), and diabetes (25.8 million).

Stunt philanthropy like the ice bucket challenge doesn’t accommodate such distinctions and comparisons — it just feeds whatever charity hits on a catchy device and treats all causes as essentially equivalent, distinguished only by their momentary claim on public attention…

One concern of philanthropy experts is that high-profile fundraising campaigns like this might cannibalize other donations — those inclined to donate $100 to charity this summer, or this year, will judge that they’ve met their social obligations by spending the money on ALS.

The column is a thoughtful one that’s worth reading in full. Click here if you’d like to.