Fuck ALS and doctors

[elit3keraed]

Just need to vent but fuck doctors and fuck ALS man. My aunt went into the hospital like 2 months ago for muscle weakness. They told her she has some nerve issue and started doing some transfusion shit that was supposed to cure her. Basically something about her nerves losing some sort of protective “sheath” or some shit which was causing them damage and this transfusion was supposed to repair it or something.


After her 3rd transfusion and getting weaker and weaker cuz “it knocks you down before it starts to work” she got intubated because she couldn’t do anything and was put in ICU. Come to fucking find out what was actually wrong was that she has ALS (like her mom did) and the treatment sped up her condition. So what would have been 3-5 years of a slow decline turned into less than 6 months because she qualified for medical assisted death (I guess it’s only available when you have less than 6 months).

It’s tomorrow at 11am. She doesn’t want visitors and I honestly didn’t think this was going to happen so I had been putting off visiting her because

A. I was being lazy and justifying the last two weeks as “I have 2 straight weeks of work and I don’t have time”
B. Doctors swore she was “getting better and would be back home soon”

I lost my uncle (her husband) 2 years ago right before my birthday due to a freak accident (he was on rx brain meds and was feeling off after taking them. Went to lay down and guess he laid in a weird way that basically asphyxiated himself because the meds lowered his respiration and the angle his head was made it too hard to breathe). Now her.

I’m just angry and want to beat the shit out of the assholes who diagnosed her wrong and took the little time she SHOULD have had left away from her.

Hug your kids tight bros, call your parents, your aunts, your uncles. Fuck just tell the people you give a shit about that you give a shit about them because you never fucking know right?

 

[GYMnTONIC]

My grandma died from ALS. They gave her 2 years, she lived 10. The last 4 years she was bedridden and we actually allowed her to pull the plug on her oxygen tank eventually. She could have lived for years more but it was torture. The poor thing just laid there and could only blink her eyes. We would use an alphabet chart and go through each letter and she would blink to choose a letter and spell words. That's how we communicated. It was horrible.

She told me she would wait for me to graduate college and she did. She died 2 weeks after I got my first degree.

So.sad. such an awful disease...turns out creatine is actually very helpful as are steroids and high. .of course they wouldnt give her any. Anything that prevents muscle degeneration assists ALS.

 

[elit3keraed]

My grandma died from ALS. They gave her 2 years, she lived 10. The last 4 years she was bedridden and we actually allowed her to pull the plug on her oxygen tank eventually. She could have lived for years more but it was torture. The poor thing just laid there and could only blink her eyes. We would use an alphabet chart and go through each letter and she would blink to choose a letter and spell words. That's how we communicated. It was horrible.

She told me she would wait for me to graduate college and she did. She died 2 weeks after I got my first degree.

So.sad. such an awful disease...turns out creatine is actually very helpful as are steroids and high. .of course they wouldnt give her any. Anything that prevents muscle degeneration assists ALS.

I’m so sorry man. My aunt was at the “can move her hand just enough to still write” but they had to load her with so many tubes and needles that she can’t even use her arms now. She just lays there.


Such a fucked up situation. Had she NOT been giving whatever transfusion she was given she’d still be talking and moving on her own at least for now.

I’m not happy she’s leaving but I’m happy she’s going out on her terms. Cuz I can’t understand what she’s experiencing but I can understand not wanting to suffer needlessly

 

[heckler7]

sorry guys thats sounds horrible

 

[Augustine5I]

How did they not get that right? Family history and all.

Bad things happen to good ppl.

Sorry bro

 

[elit3keraed]

How did they not get that right? Family history and all.

Bad things happen to good ppl.

Sorry bro

So I actually just found out that she had been going to a physical therapist for her muscle weakness and the physical therapist told her “ I know what’s wrong with you. You have this weird rare neurological thing that’s super rare” and then claimed they knew because 5 of their patients allegedly had the same super rare neurological condition.

So my aunt went to Hoag and said hey my physical therapist said that I have this medical condition and the doctor just said OK well your symptoms check out so let’s put you on this prescription transfusion shit.

After she continued to get worse and wound up in ICU at a different facility the doctors said “that’s odd that she’s not getting better” and actually did a work up rather than just take whatever some fucktard PT said as gospel.


Moment her sister mentioned the ALS the new doctor basically said “well that’s most likely it”

 

[Cypher]

@elit3keraed My heart goes out to your Aunt as well you, ALS is a terrible disease.

 

[elit3keraed]

@elit3keraed My heart goes out to your Aunt as well you, ALS is a terrible disease.

I appreciate it man. Trying to look at the “silver lining” that she won’t needlessly suffer but just damn man

 

[grock23]

Im really sorry man. ALS is horrific. Glad shes able to go on her own terms. We see too many people kept alive for way to long by family in medicine. There are much worse things than death.

 

[elit3keraed]

Im really sorry man. ALS is horrific. Glad shes able to go on her own terms. We see too many people kept alive for way to long by family in medicine. There are much worse things than death.

Yup I can’t blame her. She lost her husband 2 years ago to a freak accident sort of thing, her mom suffered from it and she had to watch her go out when they didn’t offer to “help them along” medically.

It’s one of those “I’m not happy about the situation but I’m happy for you being able to choose your path”. She seemed completely at peace when my folks went to visit which was probably the best possible outcome of all this. No fear, just peace.

 

[oldbull]

I can understand your anger at the doctors — I always have doubts about medical treatment, not because I think they are fundamentally bad or stupid, but because they’re prone to the same sloppiness and complacency in their thinking as all the rest of us. The difference is when they make a mistake, the consequences are life and death. Add to that that our medical system is biased toward certain types of treatments, etc., both because of dogmatism and due to financial incentives.

You should be proud of your aunt for taking the “death with dignity” route — in her situation, it is the rational and brave thing to do, rather than clinging to a horrific version of life out of false hope. Not casting aspersions on anyone who chooses to die naturally, but sometimes that is the worst option…

 

[elit3keraed]

I can understand your anger at the doctors — I always have doubts about medical treatment, not because I think they are fundamentally bad or stupid, but because they’re prone to the same sloppiness and complacency in their thinking as all the rest of us. The difference is when they make a mistake, the consequences are life and death. Add to that that our medical system is biased toward certain types of treatments, etc., both because of dogmatism and due to financial incentives.

You should be proud of your aunt for taking the “death with dignity” route — in her situation, it is the rational and brave thing to do, rather than clinging to a horrific version of life out of false hope. Not casting aspersions on anyone who chooses to die naturally, but sometimes that is the worst option…

Oh I am. I told her as much. I’m not happy with the situation but I’m happy she is able to make her own choice on the matter. Some people don’t agree with it but let’s be real. What benefit is there to sticking around except to suffer so that other people don’t have to face your inevitable passing? Sometimes it’s more selfish to expect someone to live than it is for someone to choose to die