
Having Alzheimer’s at 38 (2015) - onuralp
http://site.macleans.ca/longform/alzheimers/
======
entropy_
My wife's family has a different disease running through it, though one with
very similar outcomes. Huntington's.

It's genetic and dominant (so a parent having it means 50/50 for the
children). Average age of onset is 38. Symptoms are a mixture of Alzheimer's
and Parkinson's (both dementia and motor control issues).

Her uncle was diagnosed at 38, her mother at 50. I wasn't around for the first
one, but have been there for most of the latter case (her mother is now 60).

Watching someone you love deteriorate before your eyes and become a different
person week by week is one of the most harrowing experiences one can go
through.

"You pick up the phone, you talk to your mom, you don’t have to say anything.
It’s a mom". My wife had to go through discovering motherhood without that and
she still can't adjust to the fact that her mother is not the same person
anymore, it's a constant heartbreak.

I'm just glad there's a simple test for this and that both my wife and her one
brother tested negative. So I'll never have to go through what Robin did but
that possibly was something I had to contemplate for a while and just the
thought of it (and those 2 months waiting for the test results) almost broke
me

~~~
mattigames
Yeah the only end of it is gonna be when people with such diseases stop having
children, but just pointing out such an obvious solution generates all kinds
of scorn from the people you are talking to, they seem to immediately think of
"eugenics" and every other bad word and imagine you running a concentration
camp... and not just people voluntarily using birth control to avoid the
suffering of their own offspring that's all that I frequently suggest.

~~~
trcollinson
I think the issue you are probably running into is a lot more nuanced then you
are portraying it to be. Whether you are religious or scientific or some mix
of both, creating offspring is a pretty fundamental instinct that is very
deeply ingrained into humans. Logic might say "If you have a genetic
abnormality you should stop procreating for the greater good of society/your
potential offspring/yourself". But we aren't wired to think that way. We think
of procreating. The percentage of people who want absolutely zero offspring at
any point in their entire life is really tiny. People want children and will
put themselves into great levels of harm to have them. You can't really fight
that. Children make us happy.

The reason people tend to think of eugenics and concentration camps and such
is because they don't know where your slippery slope leads to. If someone with
huntington's disease should not have children for the greater good, what about
people with a family history of cancer, or a family history of heart disease.
We find people with a tendency towards weight gain less desirable, should
those people also not have children? What about people with baldness? It seems
absurd but maybe they also aren't all that desirable. Where is the line where
we say "You are desirable enough to have children"? And if we draw a line, do
we need to enforce it? I mean people with huntington's disease certainly cost
society a lot without bringing as much benefit. Should we force people like
that not to have kids? Where do we lay that line in the sand and say "this is
for the greater good!"

To me, I entirely understand why people give you scorn for your opinion. It is
a slippery slope and it goes against a fundamental human instinct that brings
joy and happiness regardless of the overall cost, pain, and suffering.

~~~
mattigames
Being wired to think that way doesn't make it right under any light
whatsoever; and I never say anything about enforcing anything; that's where
the slippery slope starts by you and everyone else who thinks the same, where
people pretend you are talking about enforcing, but you are just bringing the
_option_ of not having children as a valid way to end the suffering, because
even talking about such option brings all the hatred when it should be seen as
a logical way to avoid suffering without stepping on the rights of anyone to
reproduce.

~~~
ejstronge
Your approach might reduce the rates of these genetic illnesses, but it would
not eradicate them, as most commmon genetic illnesses have a non-negligible
rate of spontaneous occurrence.

~~~
st26
Do we know if latent precursors combine, or is it really spontaneous/random?

~~~
ejstronge
Great question! I would wager that both occur.

Each disease will have slightly different genetics, but Huntington's disease
provides a good example. There, we know that some individuals have a
predisposition to developing the disease - this bias results from having over
a certain threshold of repeating DNA bases in the _Huntingtin_ gene.

Here's an accessible discussion of Huntington's and similar diseases:
[https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3175376/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3175376/)
.

------
FlyingSideKick
My Mother started experiencing dementia at 57 and it has been difficult to see
such a brilliant, adventurous worldly woman change. She is still the person
whom she was but now she is a creature of habit and does the same thing and
the same time everyday of the week. Leaving her neighborhood and visiting new
places including restaurants and parks makes her uncomfortable. She used to
love traveling to places like Kenya, Portugal and Indonesia but now she just
wants to stay local. She was quite a sculptor too but gave that up to raise
five children and now that all of us are out of the house she doesn’t have the
capacity to peruse her old passion any longer. Moreover our conversations have
progressively become shorter and shorter over the years and lost a lot of
depth. As her son it’s very difficult to deal with. Moreover I’m in constant
fear I will be afflicted too as my grandmother had Alzheimer’s as well. Maybe
AI or some other tool will be utilized to develop medications and treatments
to halt and reverse the disease in the future, fingers crossed.

------
hackandtrip
Research is making really big step, we all hope for a cure of this and other
plague that are ruining our lives.

I often ask myself if the nature of the disease itself make it even worse:
AIDS was the worst in its age, people went in streets asking for a cure, now
we made huge steps, the same it's happening with cancer, but Alz make
everything different: the sick can't make his voice heard, he has no knowledge
of what's happening, family, with an enormous economic sacrifice, try to take
care of the sick, and their voices become silent.

I'm seeing this for the second time in my family and I can say that I can
fully understand who rely in special clinics - Switzerland is famous for this
- to stop their life once the disease make them not self-sufficient. A nice
view of this situation is given by "Terry Pratchett: Choosing to Die".

~~~
melling
Very little is spent on Alzheimer’s research compared to other diseases:

[https://www.aarp.org/health/brain-
health/info-2015/alzheimer...](https://www.aarp.org/health/brain-
health/info-2015/alzheimers-research.html)

I suppose if we made more of an effort now, we’d make considerable progress in
10-20 years.

~~~
equalunique
Maybe a sign of positive change? I have noticed Alzheimers disease lately
getting more attention from the US legislative body, via C-SPAN:

From March 23, 2018: [https://www.c-span.org/video/?442595-4/washington-
journal-dr...](https://www.c-span.org/video/?442595-4/washington-journal-dr-
keith-fargo-discusses-alzheimers-disease)

From June 19, 2018: [https://www.c-span.org/video/?447278-1/marcia-gay-harden-
tes...](https://www.c-span.org/video/?447278-1/marcia-gay-harden-testifies-
senate-hearing-alzheimers-disease)

------
creep
Goddammit. I am going to cry.

This was a wonderful piece. Empathy in every detail, while still being open
enough to satisfy a reader's curiosity. It read like a book and I accidentally
began to feel a kinship with the characters.

~~~
Jaruzel
Yup me too.

Both my grandfathers had Alzheimer's. I don't talk to my mother anymore (who
is 68) so I don't know how she is doing, and my father (70) seems to be OK so
far, but he's always been a bit 'scatty', so early signs would probably be
hard to detect. I'm in my mid 40s but I've long had a lingering fear that
Alzheimer’s will get me at some point. I find it absolutely terrifying at the
prospect of losing who I am. On and off I tinker with ways of capturing who I
am in some way, or regularly think of ways I could invent support devices to
assist me when my brain goes to mush. I am definitely preoccupied with this
topic. I doubt though, that I'll ever come up with anything to help; I'm
simply not clever enough. I am less intelligent today, than I was yesterday.
The anti-depression drugs probably don't help in that regard either.

This is why I come to HN every day... The richness of the topics covered, and
the knowledge that the comments section is a safe place to share...

Please pardon my self-reflection.

------
Beefin
Dr Rhonda Patrick and Peter Attia are two very prominent researchers that I
follow in longitivity and neural degeneration. they discuss APOE4 as being a
strong indicator of Alzheimer’s susceptibility. If you have It in your genome
it’s scary but also a lot of research goes into preventative means. For
example anti inflammation diet is a strong factor because any diseases
especially Alzheimer’s is triggered by chronic inflammation. They swear by
tumeric (curcumin) extract and probiotics. Also a lot of biomarkers are good
for measuring as well as some activittieis like of course exercise but also
saunas.

Alzheimer’s is definitely terrifying but leaps and bounds have been made in
prevention.

I’m working on a tool to help monitor and track some of these preventative
measures: Meports.com

~~~
mkam039
It's difficult to find any scientific paper's by these prominent researchers.
Where would one find those?

As far as I know, there is no concrete evidence that proves any causal
relationship between inflammation and neurodegenation.

~~~
jayzee44
Maybe no evidence of a causal relationship, but AD is characterized by
neuroinflammation, as are many other neurodegenerative diseases.

------
cyri
There is an excellent German ZDF documentary about Alzheimer/Dementia at young
people: [https://www.zdf.de/dokumentation/37-grad/37-das-grosse-
verge...](https://www.zdf.de/dokumentation/37-grad/37-das-grosse-
vergessen-100.html)

------
39283
Diseases which affect your brain are quite bizarre in terms of quantifying the
effects. I have some lesion damage from multiple sclerosis, but there's very
little information available on what effects, if any I'd be able to identify.
It's quite a bizarre experience to have physical damage that manifests in such
a way that the entire outcome is subjective (was not putting clothes in the
dryer an effect of Alzheimers? maybe), though clearly in this case the results
are later measurable as the disease progresses. Nerve damage lower in the
spine is easier to make judgements about, but still not perfect (for me this
manifests as sensation loss, which is only measurable by stabbing me with a
needle and asking how it felt).

Though obviously unobtainable, I wish there was better ways of measuring
cognitive damage than drawing overlapping pentagons, though I seem to be able
to pass that one with my own evaluation despite lack of drawing skills.

~~~
Retric
The Brain has a fair amount of redundancy and adaptability, but you use that
to deal wide a huge range of issues. So, up to a point you simply get worse
side effects from aging, concussions, drug use etc. Making a list of symptoms
hard to generalize.

~~~
39283
Yep. For MS in particular you can get very specific damage that can't be
mitigated by other parts of the brain, but in general the amount of
malleability hides a lot of impact until later.

------
ryanmercer
This is the kind of stuff that keeps me up at night. I really hope we can make
breakthroughs with these sorts of things soon.

~~~
benjohnson
Bonus: sleep deprivation is thought to cause brain damage.

~~~
tormeh
If one of the functions of sleep is to remove toxins in the brain then this
essentially follows.

------
pimmen
My grandfather is 79 and got his alzheimer's diagnosis this fall. He's lived a
long, absolutely amazing life and inspired me to become an engineer. He's the
kind of man that if he wants something done, he learns what to do and does it.

My grandfather lived his life, so I understand it's very different from the
people who develop the disease in their 30s when they were supposed to raise
children, start businesses, find their career niche and maybe their lifelong
hobby. My grandfather did all that but I'm still very sad. He will forget
everything he did, all the jobs he created with his successful businesses, all
the laughs from me and my brother when he shared his blunders in life, all the
math he learned and loved ... really everything he holds dear.

I remember reading the Wikipedia article about Claude Shannon and crying a few
years ago. He also died of alzheimer's and in his last days, he'd forgotten
the profound impact he made on the world. I just can't imagine a worse fate,
your body shutting down and all your achievements and experiences fading from
memory. It would be worse to experience it as a young man, but no matter when
it strikes, it's a way to go that nobody deserves.

------
fnord123
This topic is touched upon briefly in the excellent game / walking simulator
"Firewatch".

~~~
creep
Thank you, the trailer looks fantastic.

~~~
equalunique
I don't work for Steam or the creators of Firewatch, but here's the link:
[https://store.steampowered.com/app/383870/Firewatch/](https://store.steampowered.com/app/383870/Firewatch/)

------
rammy1234
“He’s still my family,” she says. “If your family is in trouble, you take care
of them. There isn’t another choice. You don’t just walk away.” Robin has
contemplated , made me cry. Family means we are there to support and not run
away. Great piece and hope there is some breakthrough soon for this and no one
face this anymore.

------
RickJWagner
My wife's friend lost both her mother and father to alzheimer's. She is
absolutely terrified about it.

It's an awful disease. We should make it a top priority to put an end to it.

~~~
abledon
Common theme in Science is showing how gut bacteria etc... is affecting
inflammation and alzheimers. If we "knew" that eating refined sugars/processed
foods in our diets was contributing to our chance of getting alzheimers. How
many people would actually stop eating refined sugar... probably not as many
as we hope

------
dang
Discussed at the time:
[https://news.ycombinator.com/item?id=10179161](https://news.ycombinator.com/item?id=10179161)

------
eebynight
I see someone is subscribed to Peter Attia's Newsletter.

On topic, this was seriously a very good read and I seem to have a strange
obsession of reading about afflictions of the brain and how they manifest in
different people.

------
tomrod
How very sad. I don't have the same genetic issue he does, though I do worry
about this disease and it's frequency in my family tree. Frankly, I hope for a
cure.

------
symmitchry
This sounds insane to say, if you haven't lived with a parent or family member
with dementia, but if that happens to me I really hope I have the nerve to
kill myself.

~~~
canada_dry
I fervently believe its just a matter of time (hopefully the next 10 yrs) til
we add "end-of-living power of attorney" to the list of documents that govern
how we get old.

This legal document would lay out instructions to implement assisted suicide
upon reaching a (difficult I know) threshold of mental/physical impairment.

With the exponentially increasing health care burden that aging baby boomers
are inflicting on gov't purse strings it shouldn't receive much resistance.

~~~
TheOtherHobbes
This gets insanely complicated legally and ethically, because there has to be
independent proof of loss of mental competence (which happens when...?) - but
paradoxically, assisted suicide legislation to date assumes a person is
competent to make the decision for themselves.

Clearly both can't be true. So _at best_ you end up in a brief window where
someone can be assumed to be competent enough to understand their situation
while also understanding that the competence may disappear in the near future
- possibly by the time they've travelled to a clinic - and someone else will
be making a life-ending decision on their behalf.

There also has to be no suspicion that anyone will benefit from accelerating
the suicide option - which is not always as straightforward as it sounds, and
would ideally have to be investigated explicitly on a case by case basis.

My mother had middle-stage Alzheimer's at 90, although - perhaps mercifully -
cancer killed her before Alz could.

We had issues with power of attorney, because she was very clear she wanted to
go home and live on her own, and it was absolutely obvious that she wasn't
able to do so without endangering herself.

Aside from the emotional heartbreak of having to tell someone over and over
every time you meet that they can't have something they really want - because
she couldn't remember a conversation from minute to minute, never mind day to
day or week to week - there were also a formal legal process involving two
oversight bodies (local services, and the national Court of Protection) to
make sure that keeping her in a home against her will was actually in her
interests.

It would have been _far_ harder if she'd left a living will saying "Please
make arrangements for assisted suicide when it gets to this stage" and then
apparently changed her mind as the disease progressed to the point where there
was no possibility at all of mental competence.

------
ddingus
I have tears. I fear this more than I realized before.

I think I just need to say a few things. So they exist somewhere, because of
that fear, anger and sadness brought to me by this story.

I remember the day I woke up, and by that, I mean the difference between being
that kid, experiencing, and who I am today.

It happened for me in 2nd grade. End of year, and I realized I could no longer
choose to read, it just happened. And I was angry, and excited at the same
time.

Was never the same.

That year was the beginning of me, and while I remember a lot from my very
early years, those memories aren't like the ones I have later on.

I would fear going to sleep. Would I be the same again, or someone new, or
would I forget those realizations I had at the end of that second school year?

The idea of "me" being a fragile state, a pattern that tends to endure,
provoked a sense of guardianship. I am in charge of me, nobody else.

That caused me considerable grief growing up. Others, wanting to help, were
dofficult to let in. How can I tell that, the human teasing out of who we are
becoming, from manipulation rooted in self-serving, toxic ends, not mine, me?

Took years to resolve, and with it came a joy in knowing me, seeing me happen,
grow. And others. People of all kinds. It is fun to meet them, see who they
are.

That should explain the fear. I am very aware of me, that identity I felt
congeal into a thing made aware, to grasp, and guard lest it fase, shift, be
lost.

To have it just degrade, fade away despite ehat I know must be a painful
struggle...

We need to do the work on this thing. It could be any of us, and ours facing
this quiet horror.

Jo is a lucky person. He has someone who knows his story, who can take him
back, connect.

~~~
aurbano
Have you read “Buddhism, plain and simple”?

We share many ideas and have gone through a similar awakening. As most of the
people commenting here, I wish we could all gather around a coffee table to
discuss that book and others...

Please, if you haven’t read it, consider doing so :)

~~~
ddingus
I will. Have not. Thanks.

That gathering would be epic, very high value.

I was touched by this. Made me think of things I had set aside.

A little dismayed I got negative votes. Was just sharing. Maybe unwise, but
like I said, Jo and what he is experiencing...

Yeah, a gathering to just chat, share, good, bad, would have high value.

~~~
Jaruzel
I have also just put a (used) copy in my Amazon basket.

@ddingus - ignore the haters. I also shared elsewhere on this thread and fully
expect to take a vote hit. Sharing shouldn't be about other people, it's about
_you_. If there's anything this whole thread and linked article should tell
us, it's that we are all individual people with our own histories and
personalities, and each one of us is just as precious as every other.

~~~
ddingus
Really, it's a signal. A simple query: am I alone in this? Have you
experienced this?

And it is sent, not requiring a response. More like just that signal, Others
May hear, get something from.

------
acangiano
Reading this will rightfully scare the bejeezus out of us. The question is,
what can we do? Alzheimer is sometimes referred to as diabetes type 3. Cutting
out sugar and eating a low carb diet is a good precaution. It likely wouldn't
have helped Jo, but it might save quite a few of us from this scary outcome.

~~~
lisper
> Alzheimer is sometimes referred to as diabetes type 3.

Just because it is referred to that way doesn't mean that it is actually the
case.

The hypothesis that AD=Diabetes has been around for at least ten years [1]. If
it were true, I would have expected to see some results by now about how
diabetes interventions can slow the advance of AD, if not prevent and/or
reverse it entirely. AFAICT there have been no such results. That casts the
hypothesis into serious doubt IMHO.

[1]
[https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2769828/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2769828/)

~~~
mkrecny
We're only now just waking up to the reality that type-2 diabetes can be
reversed w/ carbohydrate restriction, even though the data to support that has
been around for decades. I don't think a decade is an unusual latency for the
medical institution to lay idle on.

~~~
will_brown
>We're only now just waking up to the reality that type-2 diabetes can be
reversed w/ carbohydrate restriction

I don’t think this is a new/recent revelation at all (and in fairness, I cut
the next part of your quote that acknowledges decades old research).

And while not all cases of type 2 can be reversed (most can) but maybe more
importantly 100% of cases can be prevented through diet/exercise.

~~~
Baeocystin
>100% of cases can be prevented through diet/exercise.

Is that accurate? Honest question. I know adult onset diabetes is strongly
linked to obesity, but would have thought there are other potential causes as
well.

------
partycoder
There is a link between Alzheimer and fungal infections in the brain and a
compromised blood/brain barrier.

------
victor106
[http://news.bbc.co.uk/2/hi/health/8492918.stm](http://news.bbc.co.uk/2/hi/health/8492918.stm)

Tldr:- Didn’t find any specific gene linkage. Less stress, low cholesterol and
the other standard healthy metrics seems to make a difference.

------
yeeeeeeeeee
The Pentagons really drove home what it is like to have this. It must be so
hard...

------
delbel
There's a lot of scientific evidence that medical marijuana can remove beta-
amyloid build up in the brain. There is also evidence that unknown spirochete
diseases can cause Alheimer like symptoms. There is also cause for concern
that bio-pesticides that are GMO based are can infect the brain and cause
symptoms like this as well. I would definitely never give up if this happened
to me. Antibiotics, antiparasite, diet changes, small microdosages of CBD/THC
based marijuana strains, neuroprotective compounds, etc --- all through a
process of elimination with a journal. I hope Jo or somebody like Jo reads my
comment and tries these things.

~~~
jack9
> There's a lot of scientific evidence

I would like to see this. Do you have a link to a peer reviewed study?

~~~
jrace
While I cannot commet on whether or not these are peer reviewed, this may
provide some insight

[https://www.alzheimers.net/6-15-15-effects-of-medical-
mariju...](https://www.alzheimers.net/6-15-15-effects-of-medical-marijuana-on-
alzheimers/)
[https://www.ncbi.nlm.nih.gov/pubmed/17140265](https://www.ncbi.nlm.nih.gov/pubmed/17140265)
[https://www.salk.edu/news-release/cannabinoids-remove-
plaque...](https://www.salk.edu/news-release/cannabinoids-remove-plaque-
forming-alzheimers-proteins-from-brain-cells/)

------
vfc1
It's the food. Alzheimer looks like a form of arteriosclerosis of the brain.

In autopsies to Alzheimer patient brains we can see the small arteries of the
brain clogged with fat and colestrol, here is a video showing this with
pictures -
[https://youtu.be/WhtpyVhlu28?list=PL5TLzNi5fYd8E6GHQcmIWYGE7...](https://youtu.be/WhtpyVhlu28?list=PL5TLzNi5fYd8E6GHQcmIWYGE7vDP97529&t=90)

If plaque building in main arteries can cause heart atacks, the exact same
blood is getting to the brain - imagine what it will do there.

If anyone here has Alzheimer in the family and would like to preventively
change their diet, have a look at this other video from that playlist -
[https://www.youtube.com/watch?v=t-noCw4LsY4&list=PL5TLzNi5fY...](https://www.youtube.com/watch?v=t-noCw4LsY4&list=PL5TLzNi5fYd8E6GHQcmIWYGE7vDP97529&index=11)

In summary, there are strong indications that a whole food plant based diet
low in fat is the best-known way to prevent Alzheimer's and even alleviate the
symptoms.

Hope for Alzheimer Patients: [https://nutritionfacts.org/2017/12/26/hope-for-
alzheimers-pa...](https://nutritionfacts.org/2017/12/26/hope-for-alzheimers-
patients/)

It's important that the diet is not only plant based, but low in fat as for
example there is a lot of Alzheimer's in India where a large part of the
population is vegetarian.

This has been linked to ghee (clarified butter), as per this video:

Oxidized Cholesterol as a Cause of Alzheimers Disease -
[https://www.youtube.com/watch?v=Y15yI5LLlNY](https://www.youtube.com/watch?v=Y15yI5LLlNY)

~~~
throwaway1909
Your conspiracy theory approach to science backed by Youtube videos is
obnoxious. The cause of Alzheimer's is still unknown, but most likely related
to amyloid plaques. Diet may contribute. Or it may not. In a 38 year old, it's
genetics. Period.

~~~
ajaxaddicted
Period. So ignorant. At least give those videos a look. There is actual
science behind it. Diet contributes big time.

~~~
hk__2
> Period. So ignorant. At least give those videos a look. There is actual
> science behind it

You may want to post peer-reviewed research papers backing those videos
instead. It’s a lot easier to review.

~~~
vfc1
Here are the studies that those videos summarize, I would love to hear your
opinion on the validity of the information:

[https://nutritionfacts.org/video/oxidized-cholesterol-as-
a-c...](https://nutritionfacts.org/video/oxidized-cholesterol-as-a-cause-of-
alzheimers-disease/)

You can see the sources by scrolling down and hitting the "Sources Cited" tab.
Do you have reasons to believe that the information has been misinterpreted?

~~~
hk__2
I don’t have any opinion on the validity of that information, I’m just
suspicious of "evidence" exclusively presented as YouTube videos. Thanks for
the sources.

