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'I am mine': Alzheimer's at 41 (2018)

macleans.ca

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Re: 'I am mine': Alzheimer's at 41 (2018)

#71
post #65

Great Julianne Moore movie about early-onset alzheimer's disease called 'Still Alice'.

My late wife suffered from early-onset alzheimer's disease and I went to see this movie and I felt that it was very far from the reality as I experienced it. Yes, it does portrait many of the things that happen to people with early-onset dementia, but what it left out, is often the insight on what the disease has on the people around them, something that Alice in the movie has until almost the end of the movie. I als…

Thank you for sharing!

Re: 'I am mine': Alzheimer's at 41 (2018)

#72
post #21

For those looking to avoid alzheimer’s / dementia, there’s evidence linking it to metabolic dysfunction, and intermittent fasting has been shown to help in mice. https://www.discovermagazine.com/health/the-growing-science-...

Yeah, sure. Just don't eat, and that'll prevent alzheimer's. If you study history, you have to reconcile these views with the fact that we've been wrong about every medical development until recent history. At one point we were killing cats to curtail the black plague, when in fact it was the fleas that were the cause. We just don't know. And it's fine not to know. https://www.youtube.com/watch?v=42QuXLucH3Q

You're being downvoted without anyone responding, which seems unfair to me. I disagree with you, but your point is valid (if more certainly phrased than I would have gone with).

You're right. As a species, we are wrong nearly all the time. For all the things we know, there are dozens of theories that were contemporaries or predecessors of the correct answer as we understand it now. You are entirely ignoring that our understanding does generally get progressively better until we fully understand the subject in question.

> At one point we were killing cats to curtail the black plague, when in fact it was the fleas that were the cause.

You're right, the cats were not the direct cause, and doing so may have even increased the spread of the Black Plague by allowing rats to spread more quickly.

On the other hand, blaming the cats is much closer to the actual answer than what we would have assumed 500 years before that. Namely that some deity was angry at us, and the only way to stop it was to offer gifts to that deity. And treating it through "humors" was a bad approach, but again, much better than guessing that the person had been cursed by a deity and that their survival hinged upon making good with that deity.

Our understanding is progressive, not binary. Our correctness is binary (i.e. we're either right, or we're not), but our understanding usually comes in steps where we slowly get closer and closer to the right answer. For fasting and dementia, who knows? We might be right, and we're at the end of the tunnel. Or we might be wrong, but hopefully one step closer to figuring out what's actually going on.

> We just don't know.

This part I really don't like. There's a difference between "don't know" and "can't know". Assuming you place some level of inherent value on knowledge, it would be optimal if we did know all the things that can be known. Even if you don't place inherent value on knowledge, some knowledge is useful, and surely we should seek to know those things? It's just difficult to determine whether a particular piece of knowledge has use or not. The Planck constant doesn't strike me as particular useful, but I'm almost positive it is to other people.

> And it's fine not to know.

I also heavily disagree with this part. People are, quite literally, dying in a way that is unimaginable to most of us. Getting dementia is a terrifying thing; it's one of the few things in humanity that can make you entirely lose "you". I've lost several relatives to dementia, and it's heartbreaking to watch. Just alternating periods of dementia where they're practically not there, and periods of clarity where they're terrified about what's happening to them. Death truly is a blessing to someone in advanced stages of dementia.

"We just don't know. And it's fine not to know." reads like some late-stage depression that has manifested itself into nihilism. There are tons of corollaries that are probably a lot less comfortable, but with the same implications. "Famine has always existed. And it's fine to not help.", "Racism has always existed. And it's fine to be racist.", "We've tried to stop child abuse and it hasn't worked, so it's fine to stop trying.". Just because something is currently true does not mean it will always be true, nor does it mean that trying to change it is futile.

I'm not particularly religious, but your response does remind me of the beginning of the serenity prayer:

> God grant me the serenity > To accept the things I cannot change; > Courage to change the things I can; > And wisdom to know the difference.

The most important part of that to me is the wisdom to know the difference. I fundamentally believe that dementia is something we can change, given enough time and resources. That makes it something worthwhile to pursue.

Re: 'I am mine': Alzheimer's at 41 (2018)

#73
post #10

> Families of people with dementia land in different places on this issue, but to her, it’s beyond question that Jo is not here anymore; most everything that made him Jo has been stolen. This was very sad, but it's a good articulation of the circumstances where I would rather die than continue living. Has anyone seen a good framework to help think through scenarios like these as part of a will or end-of-life directiv…

> good articulation of the circumstances where I would rather die than continue living. I did my alternative civilian service in a nursing home for people with dementia when I was 19. I have noticed 6 stages: 1) Fear that something is wrong with their memory and incredible efforts to hide it (this is usually before they live in a nursing home). 2) Anger, shame and desperation. 3) Internalization, they then either mak…

My father is dealing with Lewy body dementia (same thing Robin Williams had) and it's terrible. His memory was bad, then came some terrible hallucinations, and now he's starting to have problems with balance and movement. He's 76.

He was in the hospital one time and they had him chained to his bed because they were scared he would hurt somebody. This is a man who never raised his voice to me even at my worst. I talked to him on the phone he begged me to call the police because he thought he was chained up in a barn that was on fire. The way he described his situation convinced me that it felt 100% real to him. The people around him were trying to kill him.

His medications have helped a bit with the hallucinations. He still sees people around his home and it scares him. The worst part though is that as bad as today is, things are going to get worse.

I just took a commercial DNA test because I'm pretty sure I'm at risk for the same end. I'll do what I can (although it seems like there might not be much) but ultimately I'm going to make sure I'm in control of the end.

If anybody here can point me to information or resources on Lewy body dementia beyond WebMD, I'd be very appreciative.

Re: 'I am mine': Alzheimer's at 41 (2018)

#74

Earlier quoted context omitted.

There isn't a framework. One of the things the article talks about is that the assisted death law in Canada requires competency at the time of death. Without looking, I expect it's often similar in other places. When my mom's dementia progressed from a state where she needed a bit of help to where she needed regular attention, I had no qualms about removing myself from the equation, because I think that if she were h…

What do you mean “removing yourself from the equation”? Abandonment?

Leaving someone with advanced Alzheimer’s in professional care full time is not abandonment. Fiction rarely shows how long it can go on with virtually no memories left and no ability to care for oneself for even a couple hours. (The fictional danger is often shows as the person forgetting where they live and walking off - the real danger is that they will shit themselves, not tell anyone, and get painful skin issues.)

That’s before you get into the emotional side. How many times a year do you think you could meet your mother and have her not know you from a stranger? No, seeing her every day doesn’t help either - it actually makes it worse for both of you.

Alzheimer’s can be such a slow death you’ve already grieved through “acceptance” while your loved one is still, medically speaking, ‘alive.’

Re: 'I am mine': Alzheimer's at 41 (2018)

#75
post #9

Jo sadly passed away shortly after this article was published. [1] RIP. [1] https://www.macleans.ca/news/canada/they-came-to-celebrate-j...

The whole situation was terrible, but given the context, I wouldn't describe his passing as "sad"

"Early one morning, a week and a half after Jo stopped eating, he peacefully exited the world with the people who loved him most by his side. He had not spent a single day in a hospital or long-term care facility."

Re: 'I am mine': Alzheimer's at 41 (2018)

#76
post #66

Earlier quoted context omitted.

I am an intermittent faster as well and IF got my blood pressure back to normal after 17 years of medication. But I have my doubts regarding usefulness of IF against dementias. These are strange, autodestructive diseases. Maybe IF can lower their incidence or push them to higher age, but unlike diabetes 2nd type, I cannot believe it can reverse them.

I think it is more like avoiding large amount of carbs to avoid developing type 2 diabetes. IF, low carb diets and more all contribute to helping avoid damage. I've even heard of Alzheimer's being called 'type 3 diabetes'. Also looking at the victim, he didn't look to be metabolically healthy, along with his wife. Households tend to eat similar. Also not eating for 4 hours before you sleep and after you wake up is a…

The plant-based diet is absolutely full of carbs and apparently is good for diabetes, too.

Of course, I’m not a doctor, I just watch YouTube videos xD

Re: 'I am mine': Alzheimer's at 41 (2018)

#78
post #61

Earlier quoted context omitted.

> Jo was adamant that he didn’t want to end up in a long-term care facility like the one in which he’d visited his mother—sometimes with Robin along for the ride when they began dating as teenagers in Kapuskasing, Ont.—and he hoped that Canada’s legalization of assisted death would allow him to avoid that. But when medical assistance in dying became law in 2016, excluded were “advance requests” that would have permit…

I am so sorry for your loss. As someone that has gone through something similar about two months ago, and who is still grieving, I can tell you that I share the same thought - "Part of me knows that death wasn't something my Grandma feared" - and I believe we are right. That generation of people is extremely strong - they went through much more than we did. Your Grandma stoically handled the nursing home and every co…

Wow. Thank you. I truly appreciate that. And my sympathies for you and your family's situation as well. I know the process will grow and change, but it's also a reality that will never go away. I'll always love and miss my grandma.

What you've said means a lot to me. I don't quite have the words to express how much your empathy means, but it's comforting to hear it from someone who has a shared experience.

Re: 'I am mine': Alzheimer's at 41 (2018)

#79
post #66

Earlier quoted context omitted.

I think it is more like avoiding large amount of carbs to avoid developing type 2 diabetes. IF, low carb diets and more all contribute to helping avoid damage. I've even heard of Alzheimer's being called 'type 3 diabetes'. Also looking at the victim, he didn't look to be metabolically healthy, along with his wife. Households tend to eat similar. Also not eating for 4 hours before you sleep and after you wake up is a…

The plant-based diet is absolutely full of carbs and apparently is good for diabetes, too. Of course, I’m not a doctor, I just watch YouTube videos xD

Yes they have carbs, but usually not to the amount and density that most pure, cheap carby foods like rice, potatoes, yams, bread, etc tend to have. Vegetables also have higher satiation.

It's actually fairly hard to get enough protein with a vegan diet unless you're eating beans, soy and vegetable protein extract and it's easy to fall into eating a lot of carbs and vegetable oil with some vegetables for flavor.

Re: 'I am mine': Alzheimer's at 41 (2018)

#80

One of medicine's most elementary failings is providing a reasonable framework for death in these diagnoses. I have to suspect the inability to die on one's terms stems from the economic incentives of powerful interests who profit from housing these patients for years, sometimes decades. My grandfather died like this of Alzheimers. My dad vowed to not follow his path should it come to that.

OP mistyped, fixed:

One of medicine's most elementary failings is [not] providing a reasonable framework for death in these diagnoses.

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