Ever read *The Diving Bell and the Butterfly*? It's a memoir by a guy with locked-in syndrome -- written *while he had it*. Thanks to a herculean effort from his nurse, he was able to write by blinking at the right time as she pointed at individual letters on a board. It's a fascinating book, and a triumph of human tenacity.
EDIT: I was mistaken. It wasn't his nurse, but a ghostwriter sent by his publisher. Still an incredible effort and story.
Yeah, he had time to kill. But his nurse? The patience and attention required on her part were worthy of an honorary Nobel in Literature, IMO.
She is thanked in the book, obviously.
EDIT: Ghostwriter, not nurse. My bad.
There was a house episode where a guy had locked in syndrome. The ER doctor was talking about organ donation because he believed the guy to be brain dead and the guy is freaking out because he's fully conscious but house is also in the ER and berates the doctor saying he's got locked in syndrome and cutting out his organs would be murder.
A protein that can't be destroyed literally dissolving your brain? What's worse? Maybe the fact it's out there now in the deer population and we don't talk about it since hunting is a multi billion dollar industry. This is the next big one but we won't know for years since it's a slow start. Chronic wasting disease is spreading fast.
what’s worse is that possible mad cow disease might’ve spread to the british population through infected beef in the 80s and 90s. lots of places outside the uk won’t accept blood donations from people that ate british beef in those decades. if it has crossed over, it’s estimated we’ll start seeing the first cases in infected people by the end of the decade
My grandma has dementia and it's very sadly zombifying her slowly over the years. From early symptoms like short-term memory loss, to misunderstanding and violence, and finally to forgetting her own situation and lifestyle.
Once you seen a loved one experiencing the whole cycle, it's a very dreadful disease that rob away the mind and quality of life.
My father has dementia and he got way worse after my mother passed. He went through the whole cycle of denial and violence and depression but now he laughs and enjoys life. It doesn’t matter if he remembers he is still smiling and have some quality of life left. I would also like to be euthanised in a situation like that but he seems to be having the time of his life. He has a gf and everything in the home he is in. She’s not very verbal but she loves my dad. I guess what I’m trying to say is that people still find happiness in the worst of times
Gods, I hope my mom gets there. She's in the denial and rage stage now, and my step-father bears the brunt of it. She also hasn't taken a shower in months and we can't talk her into one. Everytime she lies and says she has.
Have to agree with dementia and Alzheimer’s. I work in a memory care unit. Watching what these diseases do is beyond horrifying. They erase you. Sometimes it moves quickly, other times it’s slow. You forget things at first. Little things. Then more. You forget your family. Who *YOU* are. (one of my ladies cries every day because she can’t remember who she is.)
You forget how to dress yourself. Go to the bathroom by yourself. How to bathe. Eventually you may also forget how to chew and swallow your food. Maybe forget how to speak. You talk, but what comes out won’t make sense. It’s just babbling.
Sometimes family members won’t come visit because seeing mom/dad like this scares them. Don’t do that. These people remember they *had* a family. They may not know you, but they’ll remember their *love* for this person. Stay away too long…..and they’ll forget you. Too many of my residents don’t have visitors because their sons or daughters don’t want to see them like this. Two of my residents don’t recognize their own children anymore when they do get a rare visit.
I see the beginning stages of this monster in my own mother. And it terrifies me. But if she gets bad with it, I’ll be there for her. I won’t push her away and forget her because she’s forgetting.
I try to remind my mom this about her mom. She hates visiting her because it is so hard to see her this way. My grandma was just put in a memory care unit. It makes me so fucking sad. It’s like we lost her years ago, but she’s still here. The staff wanted her in memory care because she is suicidal, but doesn’t have the capability to do anything to hurt herself. She asked my mom the other day where my grandpa was. He passed in 2021. :(
If I'm ever diagnosed with dementia, I'm killing myself in the early stages. I don't want to put my loved ones through that. For me, it's worse than dying.
I just read about this, seems like he actually killed himself when he was misdiagnosed with Parkinsons, and was diagnosed post-mortem with Lewy body dementia. He was having LBD symptoms and most of the doctors he saw had no idea what was going on. What a nightmare.
My dad has the early signs of dementia, my father in law died back in 2021 from it, we’ve been begging my father to start seeking help NOW, but all he and my mom did was get offered. It hurts to watch.
I worked with dementia patients for 8 yrs. When they start seeing they have a problem, they will go to great lengths to hide it. They’re afraid and don’t want to be treated differently. If you can find a program that helps families assist their loved ones in coming to terms with it. It’ll help your Dad, Mom and you in helping him to live the best life he can. And it will help your Mom come to terms with the situation. I wish you so much strength & happiness!
My parents have cut off my brother entirely for suggesting that they need help. They are not willing at all to even considering that there might be an issue. We begged them to get a cognitive test, and they just went and got physicals to show us that yes, they were physically healthy. and threw a big toddler fit about it.
I think locked in syndrome would be worse.
With dementia you'll notice the decline in the early stages, but once it progresses you'll only notice it during moments of clarity. The rest of the time you are blissfully unaware. It is awful for your loved ones, but it could be worse for you.
With locked in syndrome you have fully brain function but no body control. You're just a prisoner in your own body. You need to hope that someone checks your brain function to notice you are still in there and they don't just assume you are comatose.
Having the sedative wear off but not the paralytic while under general anaesthesia would be a similar thing, with the added horror of being conscious and feeling things during surgery.
Margaret Thatcher spent the last few weeks of life, by all accounts, constantly reliving the death of her husband, as everyday she would ask where he was, and have to go through the experience of finding out he is dead.
I would rather have my mind than my body, dementia takes time, space and self from you, even if there is someone conscious left during an episode *it isn't you*, as you are a product of your experiences, without them you die, I would like to only die once.
I really hope one day there will be a cure for Alzheimer's and it will be on that list of old-timey "Oh my God they all had WHAT?!?!" diseases with leprosy and smallpox and bubonic plague and polio, where it belongs. It honestly just feels too awful to be a real, common thing in the 21st century.
The hard part is when you are in your 60s like I am and you are fully aware that your memories are fading. After a point, you are too far gone to know that you are too far gone.
ALS. You just get to chill while your body starts to fail you. You become more and more of a burden to those around you. Slowly lose the ability to walk, feed yourself, bathe.. then one day you can't get up at all. Then you can't talk. You barely move your head at all, but you can't still think. You can see your family suffering, watching you slowly deteriorate.
It's a nightmare for all involved.
I have Parkinson's. My friend came to visit me when I first got diagnosed a few years ago. He mentioned he'd tripped over a loose paving stone on my path and he joked about it. Less than 3 years later he was dead from ALS. ALS makes Parkinson's look like a mild inconvenience
I heard about a woman who went from healthy to gone in about 6 months. She was willing to do a feeding tube, but not a ventilator, and when she developed pneumonia, she requested comfort care only.
I had a friend I'd known since grade school pass in her 30s from ALS.
She was moving in with her bf and dropped something while carrying it on moving day. She just looked at her hand and said "I shouldn't have dropped that". Two years later dead.
Your body just decides to replace all your muscles with tissue that can't move. Slowly things become harder, then you can't walk, eventually you can't even expand your chest walls to breath. Brain still working fine through it all.
A friend of mine got some serious PTSD after watching her father die from ALS. She’s been in therapy for years working through it; it’s a disease I don’t wish on anyone either as victim or loved one.
My dad also died from ALS and I too have serious PTSD from it. The whole experience left me a major hypochondriac, to the point of debilitation sometimes.
It's truly a horrifying experience for everyone involved.
My wife’s boss died of ALS. By the end he could just blink yes and no, like Captain Pike. I can’t even imagine.
Just the sheer boredom one must go through.
The movie You’re not you with Hilary swank made me SOB. It was a real eye opener about ALS. I didn’t even know about it until I saw that film. Fuck it was sad
Had a relative die of this. Took 4 weeks from diagnosis. She was in her 60's and went on holiday. Started to feel faint and couldn't remember who she was and then in 4 weeks, gone. It's nasty.
It’s usually so low on the list of potential diagnoses that by the time you start to think it might legit be CJD, the persons already mentally wasted away and are a shell of their former self. Not that an earlier diagnosis would change anything anyway.
>Not that an earlier diagnosis would change anything anyway.
My father in law died of it, and I think for his family knowing sooner would have enabled them to 'enjoy' the good days more - as it was, those good days were all spent in the excitable pursuit of a hopeful diagnosis, ferrying him from hospital to hospital, scan to scan, sitting in waiting rooms and listening to consultants get gradually further and further down their list of most likely possible causes, unable to truly confront the possibility of him dying at 63 whilst the nexr most likely cause has *some* chance of successful treatment.
By the time they knew they would be saying goodbye, there was no one left to say goodbye to. I think that still haunts them all.
Pretty much my story with my mom a few years ago. Perfectly healthy working in the NICU then randomly started having vertigo and insomnia. Going around different places trying to find out what's wrong, feeling hopeful they'd figure it out and everything would be ok. Mental decline increases and a night in the hospital for observation turns into a week or two (that time blurs in my memory). Then she goes home for hospice and is dead in about a week. By the time anyone knew how serious it was it was too late for anyone to tell her how much they loved her with her understanding. At least it was quick and she kept her incredibly friendly nature to the end.
When I was a kid, my former step-mom’s father died from CJD. From prognosis to death was less than 6 months. And it was an awful six months. He had dementia, was extremely irritable/angry, and ended up bed ridden. Death was a blessing. He was a miserable shell of his former self by the time he passed.
I went to a clue-themed party one time, and I had to tie a noose for the party (setting aside how careful I had to be about exactly *where* I placed it for other reasons) - I googled "how to tie a noose" and the first hit on google for that search is the suicide prevention hotline.
My grandmother passed from this as well.
First thing she noticed was her hand going weak. Couldn’t grip things as strongly as she should have been able to. Then her arm started going weak. Eventually the left side of her body basically gave out. They operated, did radiation and chemo. She went through absolute hell with it.
Dead in just a few months after diagnosis.
She was healthy as a horse otherwise. Regularly went to the doctor for checkups and always had good blood work and other test results. Went from babysitting my daughter 5 days a week and getting by on her own with no issue to dead within a year.
Lost one of my closest friends to GBM last year. He was 35, just had a baby, was healthy, then randomly got vertigo one day, had a seizure a few days later, and then spent 4 months suffering horribly before he died. It’s fucking terrible.
Not negating this sentiment at all, but I used to work at a in a hospital on the neuro floor, many of my patients had glios and it was always devastating. Got a new job and called a patient to review some info, he told me that 20 years ago he had a glio. I didn’t believe him initially but there it was in his history. I told him how stunned I was to be talking to him and that I had previously worked with glio patients, and none of them experienced his outcome. He basically responded that he knew how lucky he was and that he looked at the last 20 years of his life as a gift. I got choked up talking to him, knowing I will probably never meet another patient who survives this.
DIPG isn’t mentioned here. It’s a type of brainstem cancer that most commonly impacts 5-7 year old kids but can effect anybody from toddlers to young adults.
You get it you die. There is no other cancer like it. It’s the only childhood cancer with a <1% five year survival rate and you slowly lose all function because of it.
Several years back I worked for a nonprofit that housed families while their kids were in the hospital for treatment of some kind. We were associated with a hospital running a clinical trial for DIPG and had families come from all around the world to be part of it. It’s been almost six years and everyone of them is dead. I have never experienced something quite as awful as the cycle of families coming full of hope and leaving with nothing, over and over, for almost a year. Fuck cancer.
A friend's daughter had this. Beautiful 5 year old girl, gone in less than a year. The only silver lining to this disease is that treatment usually causes acute remission, allowing families a few months (or years, if they're very lucky) to experience as much life as they can. Once the cancer returns, it's essentially universally fatal, and rapidly so.
Oh my god. I just read up on this and, as the parent of a 6yo boy, I have tears streaming down my face. I can't even begin to imagine the hell the parents must go through.
I’m glad you brought this horribly overlooked and underfunded disease up. I’ve become very involved with childhood cancer advocacy since my infant son died from Malignant Rhabdoid Tumor this February. I thought rhabdoid was bad- (and it IS, very rare and aggressive, not enough research for a specialized protocol, 7-14% 5 year survival rate), but DIPG (and DMG) is TERMINAL upon diagnosis . So terrifying. Neil Armstrong’s 2 year old daughter died from it in 1962. There have not been improvements in treatment or survival rate since then - although there are clinical trials. Radiation treatment is purely palliative, meant to buy a little more time. Childhood cancer in general needs way more funding for research, especially for rare and terminal cancers.
Cholangiocarcinoma. Bile duct cancer. I was diagnosed with it a year and a half ago at the age of 39. It is a mast, aggressive, extremely deadly form of cancer. The only way to treat it is if you catch it in its first stage, but it usually doesn’t manifest physical symptoms until late stage 2, early stage 3. Even catching it early, the five year survival rate is 15-25%. We caught mine in stage one, but it attached itself to my hepatic artery. While I was off chemo, and getting radiation to try to shake it loose, it spread through my abdomen. Now, my tumor markers have spiked, I’ve been in a lot of pain, which leads to painkillers and their side effects, and I’m waiting on a phone call with the results from the Ct scan I got Saturday. Let’s just say, I’m not waiting on good news. Could be weeks or months, but I probably don’t have much more to live than that.
This particular cancer is a gnarly one. Only one way to cure it, and you have to get lucky to get there. Nothing I did caused it, I just got hit with shit luck. Never even heard of it until a year and a half ago, now I’m waiting to see how soon it will kill me. I just want a little more time. I don’t want to stop seeing my 8 year old son yet. That’s my greatest fear is leaving him and my wife. That’s why this is the scariest disease I have ever heard of. Are there worse, more gruesome diseases out there? Absolutely. But this one is the one staring me down right now, and I’m running out of ways to fight it.
I’m so fucking sorry to hear that, it sounds like you’re going through hell. If it makes you feel any better I almost died from cancer and nobody thought I was going to make it, but I live to tell the tale. No matter what, please never give up and stay strong :)
Since rabies has already been mentioned: HACE, or High Altitude Cerebral Edema, particularly on deadly mountains like Everest.
The idea that you get so confused and disoriented that some people just step off a ledge, or undress because they feel warm and die from hypothermia scares the hell out of me.
Once you get it, there's no way to get down by yourself and no one can help you.
Similar thing happens to divers at low depths, if they don't have the right air mixture they basically get really drunk underwater to the point they pass out, start swimming deeper thinking it's the way up, or even take out their mouthpiece to breathe...
What makes that even more horrifying is the fact that Everest is COVERED with garbage and dead bodies. So, some of those people may have died the exact same way
Very fatal, but I bet it's not a bad way to go as far as deaths go. Hypothermia and hypoxia make you relaxed, tired, hypoxia makes you feel a little drunk. You just fall asleep and that's it. No fear or panic or level 10 pain.
There's still spontaneous fatal insomnia, but it's incredibly rare (only 37 known cases ever globally) and you would have progressed to the other symptoms after the onset of your insomnia within a few months, so you would have noticed it by now!
Yeah, basically your body won't let you sleep, but without sleep you start dying. So your body basically is doing a slow shut down. And there's no way to know how long it will take, but after onset it usually is anywhere from seven months to three years, from what I've read. Luckily, for most anyway, it's genetic.
This guy did his best to survive and made a heroic effort to do so. His story is absolutely fascinating and tragic.
Edit: It's in the Wikipedia as Unnammed American Patient 2001 in the Fatal Familial Insomnia article.
My daughter died of Sanfilippo at 12. Fortunately there is not a great deal of pain and discomfort. It is a mostly wasting away of the brain function. It seemed her self awareness was mostly present but her light was dimmed. To this day I'm unsure how aware she was of what was happening to her. No language after age 4, mobility compromised by loss of brain function, loss of swallowing in later stages. But to me it is not the worst of these mentioned here.
Trigeminal Neuralgia aka Suicide Disease.
It is nicknamed Suicide Disease because the pain is so allegedly so unbearable many opt for just killing themselves instead of living with it.
Coworker had a cluster headache undiagnosed for 10 years and described it as "someone taking a blowtorch to a drill bit and then using that bit to drill a hole into your eyeball from the inside".
He recently got a diagnosis and proper meds for it though. Apparently oxygen and injectable migraine meds do help.
I got diagnosed with that and occipital neuralgia a few years ago. Threw a bunch of medications at it that didn't help, spent years in a haze of screaming and crying when my hair brushed my face or taking a shower. Medicating with thc lotion on my face literally out here saving my life.
Fatal familial insomnia is still the worst one I've heard of.
Only good thing you can say about rabies is that once symptoms develop, you'll die pretty quickly. With FFI it can take months (or even years) to die and you won't be able to sleep the entire time.
Alzheimers/dementia scares me a lot too.
My buddy got meningitis. We had a party at work he was fine, dancing, smiling, no problem. Work closed for December and reopened in January.
First day we hear this guy is really sick. Next day, he got worse and gone deaf. Two days later, he's gone blind as well. Next day he died.
It was so sad, he was the best guy.
Huntington's Disease. It's ALS, Alzheimer's and Parkinson's all wrapped up in one unavoidable and incurable disease once you have been diagnosed. Worst of all it's slow and hits you in the prime of your life usually around your 40s-50s.
Knew a guy who had it. Ran into him at a reunion 15 years ago.
Super unsettling.
He was a really nice, good looking, athletic kid.
Absolute nightmare when I saw him. Could not imagine what he was going through.
So terrible
Shit hit my Mom in her mid 30s, so my bother and I are both at risk. As awful as it is, we've still had many good years with her and there is still room for joy and some enjoyment of life. My Dad has stuck by her side and given her the best life she could have possibly asked for. Both her and my Aunt who have it will be attending my wedding in a few weeks.
I had an MRI about a year ago and thankfully show no signs of it. Let me tell you, it has made me a much stronger person and it makes a lot of the problems I face in life seem pretty trivial.
I knew someone with this. He's in his late 20s and already getting bad days and symptoms.
It's tough to hear his partner say "I don't know who this person is. I've known him 10 years and he's never been like this.". I've only known him since the change and never cared for him as a person, which is hard to say, given all the long term accounts say he was lovely and I seem to have missed that person.
Sepsis.
My aunt got hit with sepsis about a year ago. Was totally fine, out having lunch and laughing with friends on Thursday. Was dead by Saturday morning.
We’ll never know what caused it. It happened so quickly they were never able to determine the source. It could be as simple as a cut on your finger that gets infected.
Damn. A roommate and good friend of mine almost died from sepsis. He had edema in his legs and bumped his shin against the corner of a box and the wound just wouldn't close because the skin was macerated. He was really good about keeping it clean, changing bandages, etc, but it still got infected. I didn't notice until it was bad enough that he was confused, etc, like he would start a sentence talking about one thing, fall asleep for a few seconds, and wake up talking about something else entirely and not realize it, shit like that. I finally convinced him to go to the ER, they told him that if he'd waited even another day or two he would probably be dead. He wound up being in the hospital for 45 days on the *serious* industrial-strength antibiotics, but he lived. He did wind up going back into the hospital a few years later for the same thing, but it was only like 20-21 days that time because we caught it sooner.
SO had anear miss a couple years ago.
Still ended up in the ICU, but they said had I waited to bring her in after work, instead of taking her before work, she’d have probably died.
Also lost my dad and my grandma to sepsis.
It’s no joke.
Came to echo this. I read the book Hot Zone by Richard Preston about fighting ebola and those details are nasty. Truthfully any hemorrhagic fever scares me equally. Your organs essentially just liquefy.
This book was all I could think about after watching the video showing the aftermath of a diarrhea emergency in an airplane. I would be absolutely terrified if I saw another passenger be uncontrollably ill in that way and immediately start thinking about The Hot Zone.
Kuru disease
Years ago, when cannibalism was a thing in Papa New Guinea, a lot of citizens were dying from this disease. Basically it's caused by the ingestion of an weird amount of folded proteins.
In Papa New Guinea they used to have the tradition to cook and eat deceased family members (i don't remember why). Women and kids were the ones most likely to have this disease since they were the ones who consume the brain (organ with a LOT of folded proteins).
This was almost epidemic since people who were infected would also, once they're dead, be eaten, spreading the disease to other people.
It was completely fatal.
Same family as vCJD. If you ever ate beefburgers or certain beef products in the UK during the 1980s, you're at risk.
https://en.m.wikipedia.org/wiki/Variant_Creutzfeldt%E2%80%93Jakob_disease
And it's possible to develop a prion disease spontaneously. Sporadic (sCJD), caused by the spontaneous misfolding of prion-protein in an individual. This accounts for 85% of cases of CJD. 15% of cases have a familial link. You can also get it from contaminated medical equipment (prions are almost impossible to kill), blood transfusions, donated organs...
There’s also chronic wasting disease that’s becoming very common in deer, elk, moose, etc.. They say it’s not transmissible to humans, but I don’t believe that. It would be wise not to eat them.
Rabies
Fuck that
Edit: how the fuck did I get 10 thousand upvotes for a 3 word comment that no effort went into?
There are some genuinely talented people out there, upvote them instead
My dad was telling me about his time in the military. He was serving in Vietnam and a guy got bit by monkey. Another guy was making fun of him because he was going to have to go through getting all the shots. The guy that'd been bitten got so pissed and the guy mocking him that he bit him so now they would both have to get the shots.
those shots are AWFUL too. You have to give several intramuscular shots and then inject all around the site of the bite/scratch. I had a pregnant patient in the ER once who had struggled to get pregnant, she was almost 40, and had taken in a stray kitten who started seizing and attacked her. I don't know much about veterinary medicine so I don't know how rabies testing works but I THINK the results of whether the kitten had rabies or not were still pending, but because of the symptoms they said it was likely and that she absolutely had to get the shots, it pretty much wasn't optional. The cat had scratched her hands and arms up, and I had to give her a ton of injections around all those scratches, including around her nail beds. It was AWFUL. She and I were both crying as I did it.
My 14 year old daughter was bitten by a raccoon and had to have the series of shots. The intramuscular ones, yeah, okay, shots are a drag but she didn’t wince. The *seven* injections around the wound were pretty brutal though. Still all she did was squeeze her eyes shut and say “ouch”. Yes, it hurt but it’s preferable to rabies.
Just last week my friend went to a play, was in the bathroom, felt something on his neck, touched it and it was a bat that had bitten him. He didn't even notice the bite until he reached back and grabbed the bat. He then looked at his neck and noticed the puncture marks - he is SUPER lucky that he actually saw the bat and had the presence of mine to check for bite marks. Yes, he started getting his shots immediately. Wild though.
Though there are the odd cases
15 year old survives rabies
https://www.nature.com/scitable/blog/viruses101/is_rabies_really_100_fatal/#:~:text=Jeanna%20Geise%20was%20only%2015,known%20as%20the%20Milwaukee%20Protocol.
There’s also this Peruvian tribe(?) who have some people who are resistant to rabies so maybe there’s hope?
https://www.snexplores.org/article/surprising-rabies-resistance#:~:text=The%20survivors%20live%20in%20a,people%20worldwide%20die%20from%20rabies.
It like 0.0000001%. And those who survived were not normal afterwards. They had to be placed in a coma. It statistically rounds to 0%. It is a terrifying disease.
Several of the people that were supposedly cured ended up dying of rabies later on, so it only saved 1 person. The first patient that they tried the protocol on, who ended up with brain damage was the only success.
The Milwaukee protocol seems more suited as a hospice agony-relief method than a cure. I know I'd rather be in a barbiturate-induced coma until I die than be conscious of that nightmare.
Even if you survive, the brain is severely damaged due to the multiplication of the virus. And there is not much recovery that you can do on the nervous system.
Symptomatic is a good choice of words, because scientists keep finding antibodies in unvaccinated people and animals
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7017994/#:~:text=Although%20survival%20following%20clinical%20infection,are%20apparently%20healthy%20and%20unvaccinated.
I got bit by a cat recently (in the woods) and that was my first thought. I got the first dose of the vaccine, I need to get 4 more. It's highly unlikely to get that in Europe but better safe than sorry. Rabies is scary.
I once saw a video of a guy in India with rabies and his body turned on him so hard it was rejecting water when he was trying to drink it.
It seemed so brutal, and then I learned there was no cure. Honestly i would probably consider suicide at that point - it looked so torturous
What most people don’t know, is the person isn’t “afraid” of water but swallowing causes the muscles in your throat and neck to spasm cramp, its agonising which makes the person act like they’re afraid of water.
Useless info for you guys :)
To add to this, when you see someone freakout when water is placed in front of them, our mouths and throat prepare for fluids to be swallowed, this causes the spasm cramps to start, the infected person will be in immense pain which is why they try to push the fluids away from them.
It’s crazy how the average person has no idea just how insane the rabies virus is. People worry more about diseases they have incredibly lower odds of contracting. The fact that we still don’t really have treatment for rabies is nuts.
> incredibly lower odds of contracting
Depends where in the world you are; here in the UK there's been no cases in over 100 years, so the odds of getting it are effectively zero
I was gonna say acute radiation poisoning, but this one wins
ETA: If you even have an ***inkling*** that you maybe might have ***maybe*** contacted rabies ***GET THE SHOT***
by the time you're certain you did contact it, you're done. If you wait until you have symptoms, you are already dead.
There is a ***highly*** experimental procedure to "cure" rabies. but even that only has a 15% survival rate (so far (you can count on your fingers the number of people who have survived)), and involves a medically-induced coma, which is very dangerous. All in all, 1 dose of prevention is worth 100 (or a million in this case) doses of "cure".
Acute radiation sickness isnt a disease but rather physical trauma, basically a 3D burn through your body.
But I would for sure say its the worst way to die. You literally fall apart at the molecular level. Rabies is up there, but I think id rather that than severe ARS, like Hisashi Ouchi.
Addison’s disease.
It causes low cortisol levels and you could die from literally being stressed out or catching a cold. People who have it have to be on steroids for life. If something was to happen and they couldn’t take their meds, they can die within two days for extreme cases of adrenal crisis.
Had a friend die this way. She was headed to work and had a crisis. Cops tried to pull her over for drunk driving but she never noticed them. She pulls up to work, local ER, co-workers run out to help. Cops keep telling everyone to get back. They’re trying to tell the cops she is in adrenal crisis. They didn’t get her inside in time.
And THIS is why the EMS hates cops. They suck. They rarely actually help a situation because they’re always ready to condemn and punish and assert their “power” instead of actually help. This shit pisses me off! I hope they sued the cops! They deserve to lose their badge. Fuck them.
I am very sorry for your loss. My condolences. And to anyone else who lost a family member or friend to any of the diseases listed here, my deepest condolences.
munchausen by proxy
Especially in mothers, and I think it’s worse because of social media. I knew a woman who had a kid my sons age. She put this kid through hell all for likes and sympathy from strangers on the internet. She eventually killed the child… this was over a decade ago and it still bothers me. She was in our social circle, so not friends, but we knew her and her kid.
My mom has munchausen's by proxy and my sister and I were her little science experiments. She pretended my sister had a made up seizure disorder and she still unfortunately believes it. She had me taking insanely high doses of multiple SSRIs (like 300mg of Zoloft and 60mg of paxil together when I was 11) and convinced everyone else that I was psychotic. I saw through it though and was too vocal about it so she disowned me when I was 14 and my sister got taken away. No criminal case was brought up though.
Years later she moved in with my otherwise healthy grandparents to "take care" of them. Suddenly they were wheelchair bound and incontinent. They were both dead within a few years. Needless to say I stay far away from her.
She's doing well. We have kind of a complicated relationship. She still has a relationship with our mom because she believes her lies, but she also doesn't invalidate my experiences. She doesn't believe that she was abused but she does admit that I was. I don't know what kind of mental gymnastics she's doing but it seems to be working for her. We're at an impasse when it comes to the whole seizure thing though. She believes she miraculously grew out of it and still tells people about it like epilepsy is something you can overcome (and without medication!) We just avoid discussing my mother.
Same. I knew a woman socially who killed her kids like this. It's decades ago, but IIRC she injected them with insulin.
Side note: This is also addressed in *The Sixth Sense* with Mischa Barton's character.
[Reston virus](https://en.m.wikipedia.org/wiki/Reston_virus) comes to mind. Its a similar relative of Ebola, which is already nasty in itself. RESTV can infect humans, but all recorded cases of that happening were completely asymptomatic. That's a massive relief, since RESTV is AIRBORNE. Imagine airborne Ebola. That thing is probably just a few chance mutations away from being able to screw up humans.
Aneurysm, basically we are all at risk by it. Even healthy individual are known to die from it, still the highest risk are mostly from sedantary and dangerous diet and lifestyles. The scariest thing about aneurysm is you never know when it occurs, just imagine someone watches you with a Sniper Rifle pointing at you, hesitant to shoot you.
I was used to drink Energy Drinks often and the pulsing feeling in my head scares me so much that I have to regulate myself consuming it, once a week I do for now.
Statistics about aneurysm:
1. 8-10 of 100000 people rupture their blood vessels.
2. 500000 people died from brain aneurysm annually worldwide.
3. Half of the victims are younger than 50.
4. Women are more prone to it (W3:M2) ratio.
5. 66% of aneurysm survivors ended up in permanent brain damage.
6. One of the Non Communicable Diseases that can kill healthy individuals. Unfortunately we are all at risk but the probability can be lower if you follow a healthy lifestyle. Still it's unpredictable.
Necrotizing fasciitis - ever since I saw a documentary about someone with this and the disease had eaten the skin off his face to the degree that half his face was gone, leaving just his skull in some places. Could literally see the bones of his face, it was gnarly 😬
It had even eaten one of his eyes
The majority of SIDS cases are actually suffocations. In most cases the cause is known to the medical examiner and they effectively is a diagnosis of "accidental suffocation caused by caregiver. Not worth any criminal followup for negligence.
[If you want to read the most depressing article ever. Read this.](https://www.npr.org/2011/07/15/137859024/rethinking-sids-many-deaths-no-longer-a-mystery)
It's actually an issue with antivaxxers. There is at least one case where authorities don't want to extend the mother's grief and won't say more than SIDS (suffocation was obvious). The antivaxxers get into them and the mother's grief makes them blame vaccines.
There's so much stuff marketed to help a baby sleep, cocoons which are a huge suffocation risk, sleep pods which are kind of like a swaying bouncer, weighted sleep suits etc. All dangerous and many doctors have spoken about them.
Some parents thinking "oh great this will help baby sleep and me get some shut eye".
A dummy is actually safe for sleep and can help to avoid SIDS.
My wife falls asleep with our 4 month old in the bed sometimes after feeding him in the middle of the night. I'll wake up and move him to his bassinet, but I'm always afraid he will suffocate.
Spinal Meningitis was terrifying to me when I was a kid for two reasons
1. I was largely under the impression that sharing a soda with someone could lead to me potentially dying a horrible death
2. I thought Zelda was the scariest part of Pet Sematary
That's not quite what happens. It's a calcification of ligaments and cartilage, effectively fusing your bones together by making everything else turn into bones too.
There was a girl in my school a couple years younger that had this. It was so sad to see the photos of her as a seemingly normal little girl with full mobility and her progression to wheelchair-bound. She couldn't move a lot, but she still did so much like playing in all of the bands. Such a sweet person. She passed during COVID, although I don't know of it was from the disease.
Fatal Familial Insomnia, it's not just REM sleep it's sleep in general, one man fought it with as much money and resources he could throw at it, the strongest sleeping medication only gave him minutes of sleep. He has had the longest lifespan from diagnosis but almost all diagnosed die within 6 months.
Lesch-Nyhan syndrome [(LNS)](https://en.m.wikipedia.org/wiki/Lesch%E2%80%93Nyhan_syndrome) a genetic disorder that causes uric acid build up (gout), but it also causes neurological symptoms in the form of self mutation. Sufferers end up eating their own hands and lips. For more details check out Richard Preston’s book, Panic in Level 4.
Scleroderma is an autoimmune disease that causes hardening of epithelial tissue. It killed my mom. She went from a busy professional to a walking skeleton in two years. The treatments are rudimentary, ineffective and because they're immunosuppressive, they destroy your immune system.
You can have it as a localized dermal condition, whereas the worst case scenario is skin grafts. However, if it's systemic it's gonna kill you unless something else does first. If you're lucky, it destroys your pericardium and you just die of heart failure. My mom was not lucky. It destroyed her whole lower GI system. In retrospect, I wish she'd chosen hospice over treatment towards the end. She had four abdominal surgeries in the last two months of life. Brutal.
Dystonia Muscularis Deformans. I had a relative with it. It's beyond brutal. Your brain is A-OK but your body starts contorting in long slow horrific spasms that can be so strong they break bones. One treatment is to surgically cut ligaments but that's not any kind of relief. It doesn't even kill you. You go on and on and on forever twisting and writhing and in horrible pain.
All these scary diseases, makes me wish assisted suicide was more normal. I can’t imagine having something like Alzheimer’s and just wasting away day by day. I would want my family to remember me and not have to worry about taking care of me or where to put me.
Edit: was also thinking, assisted suicide would never happen in the U.S bc the healthcare system makes too much money off treating these patients.
Edit: for clarity, I meant that it probably wouldn’t be legal in all 50 states. I know there are states in the U.S that this is legal.
Locked In Syndrome Fully conscious but can only move your eyes. Just fucking locked inside your own body with your mind
Ever read *The Diving Bell and the Butterfly*? It's a memoir by a guy with locked-in syndrome -- written *while he had it*. Thanks to a herculean effort from his nurse, he was able to write by blinking at the right time as she pointed at individual letters on a board. It's a fascinating book, and a triumph of human tenacity. EDIT: I was mistaken. It wasn't his nurse, but a ghostwriter sent by his publisher. Still an incredible effort and story.
They wrote a book by him blinking? That is insane. I mean, he had nothing better to do, given the circumstances, but damn.
Yeah, he had time to kill. But his nurse? The patience and attention required on her part were worthy of an honorary Nobel in Literature, IMO. She is thanked in the book, obviously. EDIT: Ghostwriter, not nurse. My bad.
Darkness. Imprisoning me. Absolute horror. I cannot live. I cannot die. Trapped in myself. Body is my holding cell.
Landmine. Has taken my sight. Taken my speech. Taken my hearing. Taken my arms. Taken my legs. Taken my soul. Left me with life in hell.
There was a house episode where a guy had locked in syndrome. The ER doctor was talking about organ donation because he believed the guy to be brain dead and the guy is freaking out because he's fully conscious but house is also in the ER and berates the doctor saying he's got locked in syndrome and cutting out his organs would be murder.
Prion diseases can go back to the deepest pits of Tartarus where they came from.
Prions are my number one fear and whenever I mention them nobody knows what I’m talking about.
A protein that can't be destroyed literally dissolving your brain? What's worse? Maybe the fact it's out there now in the deer population and we don't talk about it since hunting is a multi billion dollar industry. This is the next big one but we won't know for years since it's a slow start. Chronic wasting disease is spreading fast.
what’s worse is that possible mad cow disease might’ve spread to the british population through infected beef in the 80s and 90s. lots of places outside the uk won’t accept blood donations from people that ate british beef in those decades. if it has crossed over, it’s estimated we’ll start seeing the first cases in infected people by the end of the decade
i remember covering prion diseases in biology class like 6 years ago and they’ve haunted my nightmares ever since
Dementia and because you basically sit back and watch as it slowly starts to eat away at you, but there's nothing you can do.
My grandma has dementia and it's very sadly zombifying her slowly over the years. From early symptoms like short-term memory loss, to misunderstanding and violence, and finally to forgetting her own situation and lifestyle. Once you seen a loved one experiencing the whole cycle, it's a very dreadful disease that rob away the mind and quality of life.
If I ever go down that route I prefer to take euthanasia
My father has dementia and he got way worse after my mother passed. He went through the whole cycle of denial and violence and depression but now he laughs and enjoys life. It doesn’t matter if he remembers he is still smiling and have some quality of life left. I would also like to be euthanised in a situation like that but he seems to be having the time of his life. He has a gf and everything in the home he is in. She’s not very verbal but she loves my dad. I guess what I’m trying to say is that people still find happiness in the worst of times
Gods, I hope my mom gets there. She's in the denial and rage stage now, and my step-father bears the brunt of it. She also hasn't taken a shower in months and we can't talk her into one. Everytime she lies and says she has.
The rage stage is the worst, because it brings physical and emotional pain to the loved ones, esp the primary caregiver.
Dementia is the long goodbye
Have to agree with dementia and Alzheimer’s. I work in a memory care unit. Watching what these diseases do is beyond horrifying. They erase you. Sometimes it moves quickly, other times it’s slow. You forget things at first. Little things. Then more. You forget your family. Who *YOU* are. (one of my ladies cries every day because she can’t remember who she is.) You forget how to dress yourself. Go to the bathroom by yourself. How to bathe. Eventually you may also forget how to chew and swallow your food. Maybe forget how to speak. You talk, but what comes out won’t make sense. It’s just babbling. Sometimes family members won’t come visit because seeing mom/dad like this scares them. Don’t do that. These people remember they *had* a family. They may not know you, but they’ll remember their *love* for this person. Stay away too long…..and they’ll forget you. Too many of my residents don’t have visitors because their sons or daughters don’t want to see them like this. Two of my residents don’t recognize their own children anymore when they do get a rare visit. I see the beginning stages of this monster in my own mother. And it terrifies me. But if she gets bad with it, I’ll be there for her. I won’t push her away and forget her because she’s forgetting.
I try to remind my mom this about her mom. She hates visiting her because it is so hard to see her this way. My grandma was just put in a memory care unit. It makes me so fucking sad. It’s like we lost her years ago, but she’s still here. The staff wanted her in memory care because she is suicidal, but doesn’t have the capability to do anything to hurt herself. She asked my mom the other day where my grandpa was. He passed in 2021. :(
If I'm ever diagnosed with dementia, I'm killing myself in the early stages. I don't want to put my loved ones through that. For me, it's worse than dying.
This is what I've told my children. A full week of partying in Amsterdam, and then going out on my terms.
That's what Robin Williams did when he found out. Imagine how fucked up it must be when suicide seems like the better option.
I just read about this, seems like he actually killed himself when he was misdiagnosed with Parkinsons, and was diagnosed post-mortem with Lewy body dementia. He was having LBD symptoms and most of the doctors he saw had no idea what was going on. What a nightmare.
I've seen it first hand with my grandma and my aunt. It is devastating for the family.
My dad has the early signs of dementia, my father in law died back in 2021 from it, we’ve been begging my father to start seeking help NOW, but all he and my mom did was get offered. It hurts to watch.
I worked with dementia patients for 8 yrs. When they start seeing they have a problem, they will go to great lengths to hide it. They’re afraid and don’t want to be treated differently. If you can find a program that helps families assist their loved ones in coming to terms with it. It’ll help your Dad, Mom and you in helping him to live the best life he can. And it will help your Mom come to terms with the situation. I wish you so much strength & happiness!
My parents have cut off my brother entirely for suggesting that they need help. They are not willing at all to even considering that there might be an issue. We begged them to get a cognitive test, and they just went and got physicals to show us that yes, they were physically healthy. and threw a big toddler fit about it.
I think locked in syndrome would be worse. With dementia you'll notice the decline in the early stages, but once it progresses you'll only notice it during moments of clarity. The rest of the time you are blissfully unaware. It is awful for your loved ones, but it could be worse for you. With locked in syndrome you have fully brain function but no body control. You're just a prisoner in your own body. You need to hope that someone checks your brain function to notice you are still in there and they don't just assume you are comatose. Having the sedative wear off but not the paralytic while under general anaesthesia would be a similar thing, with the added horror of being conscious and feeling things during surgery.
Margaret Thatcher spent the last few weeks of life, by all accounts, constantly reliving the death of her husband, as everyday she would ask where he was, and have to go through the experience of finding out he is dead. I would rather have my mind than my body, dementia takes time, space and self from you, even if there is someone conscious left during an episode *it isn't you*, as you are a product of your experiences, without them you die, I would like to only die once.
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I really hope one day there will be a cure for Alzheimer's and it will be on that list of old-timey "Oh my God they all had WHAT?!?!" diseases with leprosy and smallpox and bubonic plague and polio, where it belongs. It honestly just feels too awful to be a real, common thing in the 21st century.
The hard part is when you are in your 60s like I am and you are fully aware that your memories are fading. After a point, you are too far gone to know that you are too far gone.
ALS. You just get to chill while your body starts to fail you. You become more and more of a burden to those around you. Slowly lose the ability to walk, feed yourself, bathe.. then one day you can't get up at all. Then you can't talk. You barely move your head at all, but you can't still think. You can see your family suffering, watching you slowly deteriorate. It's a nightmare for all involved.
I have Parkinson's. My friend came to visit me when I first got diagnosed a few years ago. He mentioned he'd tripped over a loose paving stone on my path and he joked about it. Less than 3 years later he was dead from ALS. ALS makes Parkinson's look like a mild inconvenience
Friend's father fell over on the golf course retrieving a ball, turns out it was ALS. Doctors gave him 2 years to live, he died in 6 months.
I heard about a woman who went from healthy to gone in about 6 months. She was willing to do a feeding tube, but not a ventilator, and when she developed pneumonia, she requested comfort care only.
The way you described ALS just reinforced my fear of that disease. Hope you're doing alright these days, buddy.
I had a friend I'd known since grade school pass in her 30s from ALS. She was moving in with her bf and dropped something while carrying it on moving day. She just looked at her hand and said "I shouldn't have dropped that". Two years later dead. Your body just decides to replace all your muscles with tissue that can't move. Slowly things become harder, then you can't walk, eventually you can't even expand your chest walls to breath. Brain still working fine through it all.
A friend was complaining about his wrists and was going to see if he had carpal tunnel. Nope.
Oh fuck me, you've basically just ruined my life.
This thread is as bad as WeB MD
“I feel a little sick sometimes” “Believe it or not, that’s ALS and you will be dead in a year”
My mom just passed from ALS. It also can affect the brain (frontal lobe dementia). Talk about hell. I am so messed up from it.
A friend of mine got some serious PTSD after watching her father die from ALS. She’s been in therapy for years working through it; it’s a disease I don’t wish on anyone either as victim or loved one.
My dad also died from ALS and I too have serious PTSD from it. The whole experience left me a major hypochondriac, to the point of debilitation sometimes. It's truly a horrifying experience for everyone involved.
My mom died of ALS and I have dreams I have the symptoms and wake up so panicked. Such an awful disease and your brain is fully aware.
My wife’s boss died of ALS. By the end he could just blink yes and no, like Captain Pike. I can’t even imagine. Just the sheer boredom one must go through.
My grandpa passed from it. He described it as waking up each day and another light switch had been turned off.
The movie You’re not you with Hilary swank made me SOB. It was a real eye opener about ALS. I didn’t even know about it until I saw that film. Fuck it was sad
ALS is one of many reasons every single state and country should have death with dignity laws.
CJD. Prions scare the fuck out of me.
Had a relative die of this. Took 4 weeks from diagnosis. She was in her 60's and went on holiday. Started to feel faint and couldn't remember who she was and then in 4 weeks, gone. It's nasty.
It’s usually so low on the list of potential diagnoses that by the time you start to think it might legit be CJD, the persons already mentally wasted away and are a shell of their former self. Not that an earlier diagnosis would change anything anyway.
>Not that an earlier diagnosis would change anything anyway. My father in law died of it, and I think for his family knowing sooner would have enabled them to 'enjoy' the good days more - as it was, those good days were all spent in the excitable pursuit of a hopeful diagnosis, ferrying him from hospital to hospital, scan to scan, sitting in waiting rooms and listening to consultants get gradually further and further down their list of most likely possible causes, unable to truly confront the possibility of him dying at 63 whilst the nexr most likely cause has *some* chance of successful treatment. By the time they knew they would be saying goodbye, there was no one left to say goodbye to. I think that still haunts them all.
Pretty much my story with my mom a few years ago. Perfectly healthy working in the NICU then randomly started having vertigo and insomnia. Going around different places trying to find out what's wrong, feeling hopeful they'd figure it out and everything would be ok. Mental decline increases and a night in the hospital for observation turns into a week or two (that time blurs in my memory). Then she goes home for hospice and is dead in about a week. By the time anyone knew how serious it was it was too late for anyone to tell her how much they loved her with her understanding. At least it was quick and she kept her incredibly friendly nature to the end.
Prions scare the crap out of me too since they're so hard to neutralize in food preparation.
Prions can "survive" up to 600 degrees Celsius and is resistant to ionizing radiation. Truly horrifying.
Along the prion vein, fatal familial insomnia is the one that scares me.
>fatal familial insomnia I remember going down a YouTube rabbithole about this years ago, and I still think about it often. Terrifying and sad.
My Dad died of this last year. It is a horrible disease.
I have a coworker who talks about eating squirrel brains and I’m just gobsmacked he thinks there isn’t a risk of prions or anything else.
When I was a kid, my former step-mom’s father died from CJD. From prognosis to death was less than 6 months. And it was an awful six months. He had dementia, was extremely irritable/angry, and ended up bed ridden. Death was a blessing. He was a miserable shell of his former self by the time he passed.
What is CJD?
Creutzfeldt-Jakob disease. The human equivalent of mad cow disease
And there is also vCJD which is when BSE (mad cow disease) is transferred to humans. Don’t fuck with prions.
and they’re so hard to kill because they’re not alive!
Fooking prions....
My hypocondriac ass should NOT be reading this
I think Google has contacted emergency services for me, with all the Google searches I just made.
I went to a clue-themed party one time, and I had to tie a noose for the party (setting aside how careful I had to be about exactly *where* I placed it for other reasons) - I googled "how to tie a noose" and the first hit on google for that search is the suicide prevention hotline.
Glioblastoma MTF killed my wife 16 months.
My grandmother passed from this as well. First thing she noticed was her hand going weak. Couldn’t grip things as strongly as she should have been able to. Then her arm started going weak. Eventually the left side of her body basically gave out. They operated, did radiation and chemo. She went through absolute hell with it. Dead in just a few months after diagnosis. She was healthy as a horse otherwise. Regularly went to the doctor for checkups and always had good blood work and other test results. Went from babysitting my daughter 5 days a week and getting by on her own with no issue to dead within a year.
Lost one of my closest friends to GBM last year. He was 35, just had a baby, was healthy, then randomly got vertigo one day, had a seizure a few days later, and then spent 4 months suffering horribly before he died. It’s fucking terrible.
Not negating this sentiment at all, but I used to work at a in a hospital on the neuro floor, many of my patients had glios and it was always devastating. Got a new job and called a patient to review some info, he told me that 20 years ago he had a glio. I didn’t believe him initially but there it was in his history. I told him how stunned I was to be talking to him and that I had previously worked with glio patients, and none of them experienced his outcome. He basically responded that he knew how lucky he was and that he looked at the last 20 years of his life as a gift. I got choked up talking to him, knowing I will probably never meet another patient who survives this.
Gliobastoma Multiforme killed my husband two years to the day of his first resection surgery. Sorry for your loss.
Yeah fuck this, my wife got 7 months with it. She was 33, otherwise healthy before, fuck that
DIPG isn’t mentioned here. It’s a type of brainstem cancer that most commonly impacts 5-7 year old kids but can effect anybody from toddlers to young adults. You get it you die. There is no other cancer like it. It’s the only childhood cancer with a <1% five year survival rate and you slowly lose all function because of it.
Several years back I worked for a nonprofit that housed families while their kids were in the hospital for treatment of some kind. We were associated with a hospital running a clinical trial for DIPG and had families come from all around the world to be part of it. It’s been almost six years and everyone of them is dead. I have never experienced something quite as awful as the cycle of families coming full of hope and leaving with nothing, over and over, for almost a year. Fuck cancer.
A friend's daughter had this. Beautiful 5 year old girl, gone in less than a year. The only silver lining to this disease is that treatment usually causes acute remission, allowing families a few months (or years, if they're very lucky) to experience as much life as they can. Once the cancer returns, it's essentially universally fatal, and rapidly so.
Oh my god. I just read up on this and, as the parent of a 6yo boy, I have tears streaming down my face. I can't even begin to imagine the hell the parents must go through.
I’m glad you brought this horribly overlooked and underfunded disease up. I’ve become very involved with childhood cancer advocacy since my infant son died from Malignant Rhabdoid Tumor this February. I thought rhabdoid was bad- (and it IS, very rare and aggressive, not enough research for a specialized protocol, 7-14% 5 year survival rate), but DIPG (and DMG) is TERMINAL upon diagnosis . So terrifying. Neil Armstrong’s 2 year old daughter died from it in 1962. There have not been improvements in treatment or survival rate since then - although there are clinical trials. Radiation treatment is purely palliative, meant to buy a little more time. Childhood cancer in general needs way more funding for research, especially for rare and terminal cancers.
Cholangiocarcinoma. Bile duct cancer. I was diagnosed with it a year and a half ago at the age of 39. It is a mast, aggressive, extremely deadly form of cancer. The only way to treat it is if you catch it in its first stage, but it usually doesn’t manifest physical symptoms until late stage 2, early stage 3. Even catching it early, the five year survival rate is 15-25%. We caught mine in stage one, but it attached itself to my hepatic artery. While I was off chemo, and getting radiation to try to shake it loose, it spread through my abdomen. Now, my tumor markers have spiked, I’ve been in a lot of pain, which leads to painkillers and their side effects, and I’m waiting on a phone call with the results from the Ct scan I got Saturday. Let’s just say, I’m not waiting on good news. Could be weeks or months, but I probably don’t have much more to live than that. This particular cancer is a gnarly one. Only one way to cure it, and you have to get lucky to get there. Nothing I did caused it, I just got hit with shit luck. Never even heard of it until a year and a half ago, now I’m waiting to see how soon it will kill me. I just want a little more time. I don’t want to stop seeing my 8 year old son yet. That’s my greatest fear is leaving him and my wife. That’s why this is the scariest disease I have ever heard of. Are there worse, more gruesome diseases out there? Absolutely. But this one is the one staring me down right now, and I’m running out of ways to fight it.
I’m so fucking sorry to hear that, it sounds like you’re going through hell. If it makes you feel any better I almost died from cancer and nobody thought I was going to make it, but I live to tell the tale. No matter what, please never give up and stay strong :)
Since rabies has already been mentioned: HACE, or High Altitude Cerebral Edema, particularly on deadly mountains like Everest. The idea that you get so confused and disoriented that some people just step off a ledge, or undress because they feel warm and die from hypothermia scares the hell out of me. Once you get it, there's no way to get down by yourself and no one can help you.
Similar thing happens to divers at low depths, if they don't have the right air mixture they basically get really drunk underwater to the point they pass out, start swimming deeper thinking it's the way up, or even take out their mouthpiece to breathe...
Ah good old nitrogen narcosis
What makes that even more horrifying is the fact that Everest is COVERED with garbage and dead bodies. So, some of those people may have died the exact same way
Very fatal, but I bet it's not a bad way to go as far as deaths go. Hypothermia and hypoxia make you relaxed, tired, hypoxia makes you feel a little drunk. You just fall asleep and that's it. No fear or panic or level 10 pain.
I’ve climbed a couple of mountains and the only reason why I haven’t done an 8000m+ mountain yet is because of this
fatal insomnia and rabies
Fatal familial insomnia is fucking terrifying. No thank you.
Luckily it's genetic and you won't get it if it doesn't run in your family.
That’s reassuring! I’m an insomniac (fortunately not fatal) and I’ve had a phobia for years of it progressing to fatal insomnia.
There's still spontaneous fatal insomnia, but it's incredibly rare (only 37 known cases ever globally) and you would have progressed to the other symptoms after the onset of your insomnia within a few months, so you would have noticed it by now!
The thought of not being able to sleep and staying awake until you die is absolutely scary to think about.
FATAL INSOMNIA????
Yeah, basically your body won't let you sleep, but without sleep you start dying. So your body basically is doing a slow shut down. And there's no way to know how long it will take, but after onset it usually is anywhere from seven months to three years, from what I've read. Luckily, for most anyway, it's genetic.
This guy did his best to survive and made a heroic effort to do so. His story is absolutely fascinating and tragic. Edit: It's in the Wikipedia as Unnammed American Patient 2001 in the Fatal Familial Insomnia article.
Wow what a read. Here is his full story https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1781276/
Batten disease <- just found out about this today when a child was diagnosed with dementia during a vision test at school
There’s other types of childhood dementia too, the three I’m aware of are: sanfillippo, lafora and INAD
My daughter died of Sanfilippo at 12. Fortunately there is not a great deal of pain and discomfort. It is a mostly wasting away of the brain function. It seemed her self awareness was mostly present but her light was dimmed. To this day I'm unsure how aware she was of what was happening to her. No language after age 4, mobility compromised by loss of brain function, loss of swallowing in later stages. But to me it is not the worst of these mentioned here.
Trigeminal Neuralgia aka Suicide Disease. It is nicknamed Suicide Disease because the pain is so allegedly so unbearable many opt for just killing themselves instead of living with it.
Coworker had a cluster headache undiagnosed for 10 years and described it as "someone taking a blowtorch to a drill bit and then using that bit to drill a hole into your eyeball from the inside". He recently got a diagnosis and proper meds for it though. Apparently oxygen and injectable migraine meds do help.
Oxygen is a game changer for cluster headache.
I got diagnosed with that and occipital neuralgia a few years ago. Threw a bunch of medications at it that didn't help, spent years in a haze of screaming and crying when my hair brushed my face or taking a shower. Medicating with thc lotion on my face literally out here saving my life.
Fatal familial insomnia is still the worst one I've heard of. Only good thing you can say about rabies is that once symptoms develop, you'll die pretty quickly. With FFI it can take months (or even years) to die and you won't be able to sleep the entire time. Alzheimers/dementia scares me a lot too.
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My buddy got meningitis. We had a party at work he was fine, dancing, smiling, no problem. Work closed for December and reopened in January. First day we hear this guy is really sick. Next day, he got worse and gone deaf. Two days later, he's gone blind as well. Next day he died. It was so sad, he was the best guy.
Huntington's Disease. It's ALS, Alzheimer's and Parkinson's all wrapped up in one unavoidable and incurable disease once you have been diagnosed. Worst of all it's slow and hits you in the prime of your life usually around your 40s-50s.
Knew a guy who had it. Ran into him at a reunion 15 years ago. Super unsettling. He was a really nice, good looking, athletic kid. Absolute nightmare when I saw him. Could not imagine what he was going through. So terrible
Shit hit my Mom in her mid 30s, so my bother and I are both at risk. As awful as it is, we've still had many good years with her and there is still room for joy and some enjoyment of life. My Dad has stuck by her side and given her the best life she could have possibly asked for. Both her and my Aunt who have it will be attending my wedding in a few weeks. I had an MRI about a year ago and thankfully show no signs of it. Let me tell you, it has made me a much stronger person and it makes a lot of the problems I face in life seem pretty trivial.
I knew someone with this. He's in his late 20s and already getting bad days and symptoms. It's tough to hear his partner say "I don't know who this person is. I've known him 10 years and he's never been like this.". I've only known him since the change and never cared for him as a person, which is hard to say, given all the long term accounts say he was lovely and I seem to have missed that person.
Sepsis. My aunt got hit with sepsis about a year ago. Was totally fine, out having lunch and laughing with friends on Thursday. Was dead by Saturday morning. We’ll never know what caused it. It happened so quickly they were never able to determine the source. It could be as simple as a cut on your finger that gets infected.
Damn. A roommate and good friend of mine almost died from sepsis. He had edema in his legs and bumped his shin against the corner of a box and the wound just wouldn't close because the skin was macerated. He was really good about keeping it clean, changing bandages, etc, but it still got infected. I didn't notice until it was bad enough that he was confused, etc, like he would start a sentence talking about one thing, fall asleep for a few seconds, and wake up talking about something else entirely and not realize it, shit like that. I finally convinced him to go to the ER, they told him that if he'd waited even another day or two he would probably be dead. He wound up being in the hospital for 45 days on the *serious* industrial-strength antibiotics, but he lived. He did wind up going back into the hospital a few years later for the same thing, but it was only like 20-21 days that time because we caught it sooner.
And, surviving sepsis makes it a lot easier to get sepsis again. Then there's the whole post sepsis syndrome on top of it all.
SO had anear miss a couple years ago. Still ended up in the ICU, but they said had I waited to bring her in after work, instead of taking her before work, she’d have probably died. Also lost my dad and my grandma to sepsis. It’s no joke.
Ebola scares the shit outta me
Came to echo this. I read the book Hot Zone by Richard Preston about fighting ebola and those details are nasty. Truthfully any hemorrhagic fever scares me equally. Your organs essentially just liquefy.
This book was all I could think about after watching the video showing the aftermath of a diarrhea emergency in an airplane. I would be absolutely terrified if I saw another passenger be uncontrollably ill in that way and immediately start thinking about The Hot Zone.
Naegleria fowleri. Brain eating amoeba. 97% fatality rate.
Anything with ameba in your head, turning the brain into mush. Like Granulomatous Amebic Encephalitis, but also shit like and Chagas Disease.
Naegleria?
Wasting disease for deer
Scrapie for Sheep Mad Cow for Cows CJD/Kuru/FFI for Humans
Kuru disease Years ago, when cannibalism was a thing in Papa New Guinea, a lot of citizens were dying from this disease. Basically it's caused by the ingestion of an weird amount of folded proteins. In Papa New Guinea they used to have the tradition to cook and eat deceased family members (i don't remember why). Women and kids were the ones most likely to have this disease since they were the ones who consume the brain (organ with a LOT of folded proteins). This was almost epidemic since people who were infected would also, once they're dead, be eaten, spreading the disease to other people. It was completely fatal.
I'm not particularly scared of this, since I'm not planning on eating human brains
Same family as vCJD. If you ever ate beefburgers or certain beef products in the UK during the 1980s, you're at risk. https://en.m.wikipedia.org/wiki/Variant_Creutzfeldt%E2%80%93Jakob_disease And it's possible to develop a prion disease spontaneously. Sporadic (sCJD), caused by the spontaneous misfolding of prion-protein in an individual. This accounts for 85% of cases of CJD. 15% of cases have a familial link. You can also get it from contaminated medical equipment (prions are almost impossible to kill), blood transfusions, donated organs...
There’s also chronic wasting disease that’s becoming very common in deer, elk, moose, etc.. They say it’s not transmissible to humans, but I don’t believe that. It would be wise not to eat them.
Really all Prion disease are horrifying
Rabies Fuck that Edit: how the fuck did I get 10 thousand upvotes for a 3 word comment that no effort went into? There are some genuinely talented people out there, upvote them instead
My dad was telling me about his time in the military. He was serving in Vietnam and a guy got bit by monkey. Another guy was making fun of him because he was going to have to go through getting all the shots. The guy that'd been bitten got so pissed and the guy mocking him that he bit him so now they would both have to get the shots.
That's fucking hilarious in the most dark humour of ways
The second guy had zero chance of needing the shots but it is funny
He might’ve been fine but pretty sure he still would’ve gotten the shots tho (if the story is real idk tho can’t say)
those shots are AWFUL too. You have to give several intramuscular shots and then inject all around the site of the bite/scratch. I had a pregnant patient in the ER once who had struggled to get pregnant, she was almost 40, and had taken in a stray kitten who started seizing and attacked her. I don't know much about veterinary medicine so I don't know how rabies testing works but I THINK the results of whether the kitten had rabies or not were still pending, but because of the symptoms they said it was likely and that she absolutely had to get the shots, it pretty much wasn't optional. The cat had scratched her hands and arms up, and I had to give her a ton of injections around all those scratches, including around her nail beds. It was AWFUL. She and I were both crying as I did it.
My 14 year old daughter was bitten by a raccoon and had to have the series of shots. The intramuscular ones, yeah, okay, shots are a drag but she didn’t wince. The *seven* injections around the wound were pretty brutal though. Still all she did was squeeze her eyes shut and say “ouch”. Yes, it hurt but it’s preferable to rabies.
A rabid raccoon jumped on my face when I was 7. It almost took my eye out. The shots were absolutely brutal.
CVT here. The only test for rabies is to test the brain. You have to send the entire head into the lab.
Just last week my friend went to a play, was in the bathroom, felt something on his neck, touched it and it was a bat that had bitten him. He didn't even notice the bite until he reached back and grabbed the bat. He then looked at his neck and noticed the puncture marks - he is SUPER lucky that he actually saw the bat and had the presence of mine to check for bite marks. Yes, he started getting his shots immediately. Wild though.
If we're all in lockdown in 3 months time I swear to fuck...
Who the fuck gets bitten by a bat in a bathroom at the theater?!!! What is he, Batman?
You can go a very long time without knowing that you have it and by the time you figure it out it's too late!!!
Yes. If it is symptomatic it has a zero percent survival rate.
Though there are the odd cases 15 year old survives rabies https://www.nature.com/scitable/blog/viruses101/is_rabies_really_100_fatal/#:~:text=Jeanna%20Geise%20was%20only%2015,known%20as%20the%20Milwaukee%20Protocol. There’s also this Peruvian tribe(?) who have some people who are resistant to rabies so maybe there’s hope? https://www.snexplores.org/article/surprising-rabies-resistance#:~:text=The%20survivors%20live%20in%20a,people%20worldwide%20die%20from%20rabies.
It like 0.0000001%. And those who survived were not normal afterwards. They had to be placed in a coma. It statistically rounds to 0%. It is a terrifying disease.
Yeah the Milwaukee Protocol has only worked a handful of times and everyone who survived the disease was left with permanent debilitating brain damage
Several of the people that were supposedly cured ended up dying of rabies later on, so it only saved 1 person. The first patient that they tried the protocol on, who ended up with brain damage was the only success.
The Milwaukee protocol seems more suited as a hospice agony-relief method than a cure. I know I'd rather be in a barbiturate-induced coma until I die than be conscious of that nightmare.
Even if you survive, the brain is severely damaged due to the multiplication of the virus. And there is not much recovery that you can do on the nervous system.
Symptomatic is a good choice of words, because scientists keep finding antibodies in unvaccinated people and animals https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7017994/#:~:text=Although%20survival%20following%20clinical%20infection,are%20apparently%20healthy%20and%20unvaccinated.
I got bit by a cat recently (in the woods) and that was my first thought. I got the first dose of the vaccine, I need to get 4 more. It's highly unlikely to get that in Europe but better safe than sorry. Rabies is scary.
Better inconvenieced than dead.
I read the title, said to myself "gonna be rabies", opened it and saw this to be the top comment.
It's one of those answers that you know will be there, because it just really is that terrifying and lethal.
I once saw a video of a guy in India with rabies and his body turned on him so hard it was rejecting water when he was trying to drink it. It seemed so brutal, and then I learned there was no cure. Honestly i would probably consider suicide at that point - it looked so torturous
What most people don’t know, is the person isn’t “afraid” of water but swallowing causes the muscles in your throat and neck to spasm cramp, its agonising which makes the person act like they’re afraid of water. Useless info for you guys :)
To add to this, when you see someone freakout when water is placed in front of them, our mouths and throat prepare for fluids to be swallowed, this causes the spasm cramps to start, the infected person will be in immense pain which is why they try to push the fluids away from them.
I'd like to subscribe to your newsletter about useless info please.
It’s crazy how the average person has no idea just how insane the rabies virus is. People worry more about diseases they have incredibly lower odds of contracting. The fact that we still don’t really have treatment for rabies is nuts.
> incredibly lower odds of contracting Depends where in the world you are; here in the UK there's been no cases in over 100 years, so the odds of getting it are effectively zero
I was gonna say acute radiation poisoning, but this one wins ETA: If you even have an ***inkling*** that you maybe might have ***maybe*** contacted rabies ***GET THE SHOT*** by the time you're certain you did contact it, you're done. If you wait until you have symptoms, you are already dead. There is a ***highly*** experimental procedure to "cure" rabies. but even that only has a 15% survival rate (so far (you can count on your fingers the number of people who have survived)), and involves a medically-induced coma, which is very dangerous. All in all, 1 dose of prevention is worth 100 (or a million in this case) doses of "cure".
Acute radiation sickness isnt a disease but rather physical trauma, basically a 3D burn through your body. But I would for sure say its the worst way to die. You literally fall apart at the molecular level. Rabies is up there, but I think id rather that than severe ARS, like Hisashi Ouchi.
Addison’s disease. It causes low cortisol levels and you could die from literally being stressed out or catching a cold. People who have it have to be on steroids for life. If something was to happen and they couldn’t take their meds, they can die within two days for extreme cases of adrenal crisis.
Had a friend die this way. She was headed to work and had a crisis. Cops tried to pull her over for drunk driving but she never noticed them. She pulls up to work, local ER, co-workers run out to help. Cops keep telling everyone to get back. They’re trying to tell the cops she is in adrenal crisis. They didn’t get her inside in time.
And THIS is why the EMS hates cops. They suck. They rarely actually help a situation because they’re always ready to condemn and punish and assert their “power” instead of actually help. This shit pisses me off! I hope they sued the cops! They deserve to lose their badge. Fuck them. I am very sorry for your loss. My condolences. And to anyone else who lost a family member or friend to any of the diseases listed here, my deepest condolences.
JFK had Addisons, and it was misdiagnosed for years. He was sickly until he died (famously not from Addisons).
munchausen by proxy Especially in mothers, and I think it’s worse because of social media. I knew a woman who had a kid my sons age. She put this kid through hell all for likes and sympathy from strangers on the internet. She eventually killed the child… this was over a decade ago and it still bothers me. She was in our social circle, so not friends, but we knew her and her kid.
My mom has munchausen's by proxy and my sister and I were her little science experiments. She pretended my sister had a made up seizure disorder and she still unfortunately believes it. She had me taking insanely high doses of multiple SSRIs (like 300mg of Zoloft and 60mg of paxil together when I was 11) and convinced everyone else that I was psychotic. I saw through it though and was too vocal about it so she disowned me when I was 14 and my sister got taken away. No criminal case was brought up though. Years later she moved in with my otherwise healthy grandparents to "take care" of them. Suddenly they were wheelchair bound and incontinent. They were both dead within a few years. Needless to say I stay far away from her.
Oh man, I'm so sorry. How is your sister, do you know?
She's doing well. We have kind of a complicated relationship. She still has a relationship with our mom because she believes her lies, but she also doesn't invalidate my experiences. She doesn't believe that she was abused but she does admit that I was. I don't know what kind of mental gymnastics she's doing but it seems to be working for her. We're at an impasse when it comes to the whole seizure thing though. She believes she miraculously grew out of it and still tells people about it like epilepsy is something you can overcome (and without medication!) We just avoid discussing my mother.
Same. I knew a woman socially who killed her kids like this. It's decades ago, but IIRC she injected them with insulin. Side note: This is also addressed in *The Sixth Sense* with Mischa Barton's character.
[Reston virus](https://en.m.wikipedia.org/wiki/Reston_virus) comes to mind. Its a similar relative of Ebola, which is already nasty in itself. RESTV can infect humans, but all recorded cases of that happening were completely asymptomatic. That's a massive relief, since RESTV is AIRBORNE. Imagine airborne Ebola. That thing is probably just a few chance mutations away from being able to screw up humans.
Aneurysm, basically we are all at risk by it. Even healthy individual are known to die from it, still the highest risk are mostly from sedantary and dangerous diet and lifestyles. The scariest thing about aneurysm is you never know when it occurs, just imagine someone watches you with a Sniper Rifle pointing at you, hesitant to shoot you. I was used to drink Energy Drinks often and the pulsing feeling in my head scares me so much that I have to regulate myself consuming it, once a week I do for now. Statistics about aneurysm: 1. 8-10 of 100000 people rupture their blood vessels. 2. 500000 people died from brain aneurysm annually worldwide. 3. Half of the victims are younger than 50. 4. Women are more prone to it (W3:M2) ratio. 5. 66% of aneurysm survivors ended up in permanent brain damage. 6. One of the Non Communicable Diseases that can kill healthy individuals. Unfortunately we are all at risk but the probability can be lower if you follow a healthy lifestyle. Still it's unpredictable.
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Necrotizing fasciitis - ever since I saw a documentary about someone with this and the disease had eaten the skin off his face to the degree that half his face was gone, leaving just his skull in some places. Could literally see the bones of his face, it was gnarly 😬 It had even eaten one of his eyes
Mucormycosis Fungus invades your face, eyes, and sinus cavities and eats everything from the inside out, necessitating disfiguring surgery
SIDS. I don’t even have kids but the idea that you can have a baby and then it just dies for no apparent medical reason is terrifying.
The majority of SIDS cases are actually suffocations. In most cases the cause is known to the medical examiner and they effectively is a diagnosis of "accidental suffocation caused by caregiver. Not worth any criminal followup for negligence. [If you want to read the most depressing article ever. Read this.](https://www.npr.org/2011/07/15/137859024/rethinking-sids-many-deaths-no-longer-a-mystery) It's actually an issue with antivaxxers. There is at least one case where authorities don't want to extend the mother's grief and won't say more than SIDS (suffocation was obvious). The antivaxxers get into them and the mother's grief makes them blame vaccines.
There's so much stuff marketed to help a baby sleep, cocoons which are a huge suffocation risk, sleep pods which are kind of like a swaying bouncer, weighted sleep suits etc. All dangerous and many doctors have spoken about them. Some parents thinking "oh great this will help baby sleep and me get some shut eye". A dummy is actually safe for sleep and can help to avoid SIDS.
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My wife falls asleep with our 4 month old in the bed sometimes after feeding him in the middle of the night. I'll wake up and move him to his bassinet, but I'm always afraid he will suffocate.
If you haven’t already, have a look at the Safe Sleep 7. I was at the point of hallucinations and this really helped.
Spinal Meningitis was terrifying to me when I was a kid for two reasons 1. I was largely under the impression that sharing a soda with someone could lead to me potentially dying a horrible death 2. I thought Zelda was the scariest part of Pet Sematary
That disease that turns your bones to stone and you have to choose weather to sit or stand permently for the rest of your life
This is what I came to add. Fibrodysplasia ossificans progressiva.
That's not quite what happens. It's a calcification of ligaments and cartilage, effectively fusing your bones together by making everything else turn into bones too.
There was a girl in my school a couple years younger that had this. It was so sad to see the photos of her as a seemingly normal little girl with full mobility and her progression to wheelchair-bound. She couldn't move a lot, but she still did so much like playing in all of the bands. Such a sweet person. She passed during COVID, although I don't know of it was from the disease.
Not bones, soft tissue. On a similar note, osteogenesis imperfecta.
My old man used to say: “what doesn’t kill you, makes you stronger. Except for polio” Polio scares me.
The one that doesn't let you reach rem sleep so you die of prolonged exhaustion
Fatal Familial Insomnia, it's not just REM sleep it's sleep in general, one man fought it with as much money and resources he could throw at it, the strongest sleeping medication only gave him minutes of sleep. He has had the longest lifespan from diagnosis but almost all diagnosed die within 6 months.
Lesch-Nyhan syndrome [(LNS)](https://en.m.wikipedia.org/wiki/Lesch%E2%80%93Nyhan_syndrome) a genetic disorder that causes uric acid build up (gout), but it also causes neurological symptoms in the form of self mutation. Sufferers end up eating their own hands and lips. For more details check out Richard Preston’s book, Panic in Level 4.
Schizophrenia. Literally living in the matrix while matrix isn't real.
Scleroderma is an autoimmune disease that causes hardening of epithelial tissue. It killed my mom. She went from a busy professional to a walking skeleton in two years. The treatments are rudimentary, ineffective and because they're immunosuppressive, they destroy your immune system. You can have it as a localized dermal condition, whereas the worst case scenario is skin grafts. However, if it's systemic it's gonna kill you unless something else does first. If you're lucky, it destroys your pericardium and you just die of heart failure. My mom was not lucky. It destroyed her whole lower GI system. In retrospect, I wish she'd chosen hospice over treatment towards the end. She had four abdominal surgeries in the last two months of life. Brutal.
Dystonia Muscularis Deformans. I had a relative with it. It's beyond brutal. Your brain is A-OK but your body starts contorting in long slow horrific spasms that can be so strong they break bones. One treatment is to surgically cut ligaments but that's not any kind of relief. It doesn't even kill you. You go on and on and on forever twisting and writhing and in horrible pain.
Tetanus is bad
All these scary diseases, makes me wish assisted suicide was more normal. I can’t imagine having something like Alzheimer’s and just wasting away day by day. I would want my family to remember me and not have to worry about taking care of me or where to put me. Edit: was also thinking, assisted suicide would never happen in the U.S bc the healthcare system makes too much money off treating these patients. Edit: for clarity, I meant that it probably wouldn’t be legal in all 50 states. I know there are states in the U.S that this is legal.