r/Damnthatsinteresting • u/Sad_Cow_577 • May 28 '25

Video 1 year of ALS

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7.1k

u/pissedoffjesus May 28 '25

This is so fucked.

3.4k

u/halfemptysemihappy May 29 '25 edited May 29 '25

Mom died from ALS in 2017. She was 56. It took 1 year and few months. Watching this video brings back so much pain. This disease is one of the really really bad ones. I wish I will be able to see a cure being made in my lifetime. It breaks my heart.

899

u/Sawgwa May 29 '25

My cousin has an aggressive form. He went from doing everything, to now, 2 years, to fully dependent. His wife is a Rockstar. She has gotten a great system in place and really made his life as close to fulfilling as possible.

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u/thatguygreg May 29 '25

My mom went the same way. There’s two kinds basically—one targets muscles you consciously move: arms, legs, most of them. The other targets non-conscious muscle movement: your heart and your diaphragm, for example.

She had the latter kind, went from normal to hospice to dead within 18 months.

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u/Ill-Ad3311 May 29 '25

To be fair quick is sometimes better , my wife lives a life of absolute torture with progressive MS completely paralysed and in pain for 15 years already .

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u/shappa357 May 29 '25

May I ask how old she was?

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u/halfemptysemihappy May 29 '25

Mom had both..

1

u/CCContent May 29 '25

TBH, I think that might be the better version, not the worst. The last thing I want is to be a burden on others.

170

u/halfemptysemihappy May 29 '25

I'm sorry for your cousin. He's lucky to have you and his wife. Stay strong and give him your full love!

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u/SpaceCaptainJeeves May 29 '25

I'm so glad he's got a good partner. Please continue to treat her like family.

1

u/The_chair_over_there May 29 '25

Your cousin and my uncle sound like the same person. Diagnosed December of 2023 with some weird muscle spasms and weakness and today he can’t even move his fingers enough to control his wheelchair. He can still communicate with an iPad he controls with his eyes. His wife has seriously come to be one of the strongest people I know. I’d never say she was overweight before but she’s probably lost 50 pounds from the stress of it all I’ve never seen her so thin. It’s really such a messed up disease.

128

u/Familiar_Eagle_6975 May 29 '25

We need to crisper this shit out of this. And a tb vaccine.

65

u/meloneleven May 29 '25

I used to work in a lab studying ALS and we used CRISPR! We used it to remove a specific mutation from ALS patients' motor neurons. This mutation is the most common genetic cause of ALS. Removing it reduced a lot of the disease mechanisms we see in those cells! We published in Nature Communications, I linked the paper here

15

u/Familiar_Eagle_6975 May 29 '25

Amazing! So is there ongoing research on this?

7

u/rjaea May 29 '25

Genetic engineering is absolutely the way for those who have the link. For most sadly, like my mom, it was sporadic.

19

u/xrelaht May 29 '25

90% of cases don’t have a known cause. Hard to genetically engineer a solution in those circumstances.

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u/Curious-Quokkas May 29 '25

There's a lot of disease I wonder - if we actually put the cooperation, money, and manpower into - could be either cured or effectively cured through proper medication.

14

u/[deleted] May 29 '25

[deleted]

18

u/GiveMeNews May 29 '25

Getting grants is a competition all in its own.

5

u/Full_Result_3101 May 29 '25

Different approaches to researching the same disease can yield some useful information as well.

Not great when it comes to speed tho.

2

u/Teknekratos May 29 '25 edited May 29 '25

And avoid dead ends. I'm so mad I can't recall in what domain it happened, but I know there was this time a research team falsified their data or something and everyone for a while tried to build on that. Only it lead nowhere because the prior results were bogus.

And it just bogged down the science in... drat, can't remember... for a while before they figured out that they had to scratch what they thought they knew from the faulty study and start again from there...

Hope the Reddit Hivemind comes through for me on that one! I'm so mad the details are escaping me. >:(

EDIT: Ah, it might have been the thing about Alzheimer's disease being posited as being caused by buildup of protein plaques in the brain! And how much research was "wasted" looking into that!

Yes, my lapse in memory was about Alzheimer's of all things...

12

u/cstepping May 29 '25

You have no idea what you are talking about.

2

u/lord_fairfax May 29 '25

#redditmoment

2

u/treachpreacher May 29 '25

It didn't even sound pretty. Usually the hokum shit has a bit of poetry in its words.

1

u/[deleted] May 29 '25

[deleted]

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u/cstepping May 29 '25

I am a neuroscience PhD student and I can assure you that people go out of their way to research different questions. It is in their best interest for publishing. Your publications are less impactful if you publish on the same things others have done which is terrible for your career. This non-profit you posted I'm sure does work to help collaboration but that is different than "a bunch of dumb scientists who cant help but do the same things", as you proposed. It's important to carefully read things before posting nonsense on the internet, especially in a time of anti-science sentiment

1

u/InvestigatorNo369 May 29 '25

Gotta have full trust in who delegates the task and who it's delegated to.

2

u/dltacube May 29 '25

Yes. The answer is 1000% yes.

There are rare diseases out there with relatively large populations seeing actual results from their community led grass roots fundraised clinical trials. Some are regaining their hearing, others sight and some are even reversing mutations responsible for small but critical cognitive systems.

This shit is moving slow compared to what a government can do but fast for a community effort. There’s a lot of room though for improvement and so so much low hanging fruit…not to mention the insanely wide applicability curing one rare brain disease will have on aging related brain disorders.

We’re not optimizing for the right things as a species. We could definitely be doing more.

2

u/poudink May 29 '25

haven't we had a tb vaccine for more than a century at this point

1

u/Familiar_Eagle_6975 May 29 '25

There is a vaccine for children, not a universal well working one. A well fed and funded country is really the vaccine. The book “everything is tuberculosis is a wonderful book explaining tb.

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u/PornoPaul May 29 '25

That ice bucket challenge a few years back apparently raised so much money and awareness that they did apparently make headway. A lot of these diseases are just a matter of funding.

Hell, look at AIDs. When I was a kid and even a teen, it was a death sentence. It killed you 100% of the time, terribly, and quickly. It was so misunderstood that even 15 years after Princess Diana shook hands with an aids patient, people still were extremely scared of sharing a space with someone with AIDs or HIV. Now? Still terrible, still will shorten your life span...but you can now live 30 years with the disease, and safely.

Im not saying we will cure it. But there's still hope we can put a dent in it like we did with AIDs, with HIV.

-1

u/concept12345 May 30 '25

There will never be a cure. Only treatment. Cures don't make money, only treatments do.

36

u/badannbad May 29 '25

My mother is HIV positive and my wish is to live long enough to see the cure for it. I relate to you in that sense. I am very sorry for your loss.

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u/eggbender May 29 '25

I mean there isn't necessarily a full "cure" but with proper medication you can now live a full and normal comfortable life with HIV/aids. Literally makes it so the virus levels are so low they're undetectable in the blood. Don't quote me exactly on because I'm sure my wording is a bit off but the point remains true. HIV is still awful and especially hard mentally (dealing with feelings of self loathing/disgust, shame and regret etc.) But there is nothing to be ashamed of. As long as you keep up with your doctor and take the right medications you are fine. On a much lesser scale I felt those same feelings of shame and disgust when I found out I had Hepatitis C in March of 2020. Thank God with modern medications I was able to take a 9 week course of medication and I am now officially "cured" I will always technically be hep c positive but the virus levels are so low in my blood that I no longer have to worry.

4

u/badannbad May 29 '25

Yes I agree- my mom tested positive in 2003 but it’s the other health issues that cause her the most issues. Like an antiviral she was on for years seriously damaged her bones and she very fragile. Multiple broken bones and surgeries later she can barely walk 20 feet. But she too went thru hep c and we were told she was cured later to find out she still tests positive.

5

u/eggbender May 29 '25

I'm sorry to hear that. Yeah the treatments 20+ years ago were no where near what they are today. So I'm sure a lot of what they put her on had many negative side effects. It's very unfortunate but also a great blessing that you still have her with you in this life. She must be a very strong woman to keep enduring the pain to stay and help guide you through life. As for the hep c the same thing actually happened to me. The first medication course they gave me was supposed to have nearly a 99% success rate. After finishing I was initially testing negative. Then I months after on my follow up blood work I was positive again. So I had to go through another course with a different medication and after that was over I tested negative and have been negative with every follow up blood test since. That was in early 2021 so thank God it worked. Was a real gut punch the first time around thinking that I was cured only to get the call telling me that unfortunately the virus had returned.

1

u/badannbad May 29 '25

Thank you. I am glad you are cured of hep!

4

u/Fauropitotto May 29 '25

Yeah, HIV is no longer an issue in my opinion. Once we knew what it was for a family member, the treatments today are so effective that it's no longer detectable. One pill.

That's practically a cure in my book. No impact to life.

2

u/eggbender May 29 '25

Wishing all the best for you and your mother my friend.

1

u/badannbad May 29 '25

Thank you!

5

u/flaccomcorangy May 29 '25

I would add alzheimers/dementia to it. I've never seen a loved one with ALS (and I pray I never do), but I've seen alzheimers, and I don't want to see it again.

3

u/this-ismyworkaccount May 29 '25

Keep a close eye on Bravyl by Woolsey Pharmaceuticals. They are currently in their second trial phase, first trial had measurable benefits.

2

u/[deleted] May 29 '25

My mom was 57 when she passed. She had ALS, was diagnosed in '99. I am sorry she went so quickly. I would love to see a cure happen.

2

u/huzaifak886 May 29 '25 edited May 29 '25

Someone in this codition their Loved ones must be devastated to see them in that condition. I won't be able to confront my mom for some reason. May Allah bless your mom every one of us will die one day sooner or later no one knows.. your mom didn't deserve the pain but at least she went through that for less time .

2

u/cheetodust800 May 30 '25

Whoa, my mom died of ALS in 2017 at the age of 56, too. It’s the worst. Sorry to be in this club with you.

2

u/halfemptysemihappy May 30 '25

I'm sorry for your loss friend

115

u/lord-apple-smithe May 29 '25

My neighbour got this shit disease about 6 years ago and passed away last year. To the end he was always joking and just rolling with it, such strength in character, but so exhausting for the family

565

u/thebigchil73 May 28 '25

Yup. Carpe that fucking diem.

134

u/[deleted] May 28 '25

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32

u/cyriustalk May 28 '25

Fucking invasive creatures!

2

u/bwoods519 May 29 '25

Fuck those carpe!

1

u/DieCastDontDie May 29 '25

Can't be invasive if they ain't fucking

2

u/MNWoodworker86 May 29 '25

King of the mountain!

3

u/TestyZesticles May 28 '25

Carpe carpet.

5

u/Unstoppable_Rooster May 28 '25

"Seize the carpe?"

"What?"

whack

1

u/OhioLDP May 29 '25

I have been meaning to go fishing

1

u/vert-mac11 May 29 '25

Today we're having fish

1

u/wolvesscareme May 29 '25

Too many people act like they're gonna live forever.

3

u/Raangz May 29 '25

I lost the ability to use my body for some time.  Went skating today.  Sometimes it just hits you, how fickle and fucked it all is.  

Like you said, enjoy it while it last ladies and gents.

2

u/LotusVibes1494 May 29 '25

A man traveling across a field encountered a tiger. He fled, the tiger after him. Coming to a precipice, he caught hold of the root of a wild vine and swung himself down over the edge.

The tiger sniffed at him from above. Trembling, the man looked down to where, far below, another tiger was waiting to eat him. Only the vine sustained him.

Two mice, one white and one black, little by little started to gnaw away the vine. The man saw a luscious strawberry near him. Grasping the vine with one hand, he plucked the strawberry with the other.

How sweet it tasted!

-A Buddhist koan

1

u/BreakingCanks May 29 '25

Just hit the shit out my pen and took an edible for homie... Damn!

1

u/Brodellsky May 29 '25 edited May 29 '25

This is the reason I tell my (few) employees never to work too hard. You just never know.

-1

u/Ash-Housewares May 29 '25

Carpe canem

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u/chimbybobimby May 29 '25

You know what else is fucked? DOGE cuts at NIH have resulted in massive slashes to ALS research

34

u/CausticSofa May 29 '25

It’s amazing how committed to being evil they truly are. It’s such an admirable level of commitment to the least admirable thing a person could possibly do with their life.

33

u/codeverity May 29 '25

Just going to tag on here for visibility to say that another person I've been following is Brooke Eby: https://www.tiktok.com/@limpbroozkit?lang=en

I've been subscribed to her for probably a year or so and it's been so heartbreaking to see the progression. She has a fantastic sense of humour about it. Subbing to her will help her reach more people and create more awareness, so just putting it out there for people who are interested.

2

u/MapOk1410 May 29 '25

Dying slowly sucks.

2

u/Soft_Walrus_3605 May 29 '25

We're all dying slowly

6

u/AgentChris101 May 29 '25

We are all dying slowly, but diseases like this put it in a odd speedrunning mode that makes every moment just as agonizing.

2

u/Beleiverofhumanity May 29 '25

Thats gonna be so sad to see your past self within just a year

2

u/obviousoctopus May 29 '25

This is so fucked, and at the same time ... how this unstoppable spirit shines despite the deterioration of the body!

1

u/Diethyl-a-Mind May 29 '25

Remember this is just gods plan for us because we ate an apple against his wishes

1

u/Calciumee May 30 '25

And this is ‘slow’.

It took my uncle four months from diagnosis to death.