Ask HN: I'm a software engineer diagnosed with Alzheimer's,how should I prepare? - charlieporter
======
_448
Video record, write down important things. Make a will, write down all your
account details and give it to a custodian/lawyer. That will help you when to
look back and remember. In the mean time, do yoga and pranayam, and eat as
much healthy food as possible and go for a walk every day. Set a daily routine
and follow it religiously e.g. the one that I have heard from
doctors(traditional and non-traditional) is that you should wake-up at 4:00
am, do exercise/meditation, have your lunch before 7:00 am, during the rest of
the day have only fruits, dry-fruits and water. Take a break from work every
30-60 mins and get out of your chair and walk for 5 mins. Have light dinner
before 5:00 pm, go for a walk with family or friends, do 5-10 mins pranayam
before going to bed at 8:00 pm. This routine will help build your health(both
physical and mental).

Just my 2cents.

~~~
vaxman
Before someone develops Alzheimers, they develop something called Mild
Cognitive Impairment (MCI). Not everyone with MCI goes on to develop
Alzheimers. Though Alzheimers patients may talk about their work for the rest
of their lives, they're not going to be able to reliably function in their
work ever again. Period.

As far as MCI goes, potential new interview question: "Stand on either foot
and count backwards from 100 by 7 please."

Disclaimer: I am not a medical doctor.

~~~
_448
> "Stand on either foot and count backwards from 100 by 7 please."

Though I do not have mental health issues, I do this(minus the counting) to
just keep my brain fresh. It is a good idea to use your both hands as well
regularly or occassionally for task that they are not used to e.g. writing or
painting with your left hand(if you are right hander) or with right hand. My
drawing teacher in school use to paint with either hands!

------
xivzgrev
Uhh as in you actually have it, or you took a 23and me that says your risk is
higher?

If you actually have it you would be exhibiting symptoms already, so there’s
not much to prepare for. Ive included more info from Mayo Clinic below.

If it’s a 23andme test take that worth a grain of salt. They disclaim heavily
that correlation does not equal causation. You should also google the 5 daily
habits to increase lifespan, one of the habits helps stave off Alzheimer’s,
doing things like daily crosswords

—-

For those with Alzheimer's dementia, doctors can offer drug and nondrug
interventions that may ease the burden of the disease. Doctors often prescribe
drugs that may slow the decline in memory and other cognitive skills. You may
also be able to participate in clinical trials.

Also, doctors can teach you and your caregivers about strategies to enhance
your living environment, establish routines, plan activities and manage
changes in skills to minimize the effect of the disease on your everyday life.

Importantly, an early diagnosis also helps you, your family and caregivers
plan for the future. You'll have the chance to make informed decisions on a
number of issues, such as:

Appropriate community services and resources Options for residential and at-
home care Plans for handling financial issues Expectations for future care and
medical decisions

[https://www.mayoclinic.org/diseases-conditions/alzheimers-
di...](https://www.mayoclinic.org/diseases-conditions/alzheimers-disease/in-
depth/alzheimers/art-20048075)

~~~
melling
If one lives to be into their mid-80’s, there’s almost a 50% chance of
developing the disease.

Bill Gates has started funding research. Hopefully, we can address the disease
in some form within a decade or two.

[https://www.gatesnotes.com/Health/Digging-Deep-Into-
Alzheime...](https://www.gatesnotes.com/Health/Digging-Deep-Into-Alzheimers)

[https://www.gatesnotes.com/Health/How-you-can-help-fight-
Alz...](https://www.gatesnotes.com/Health/How-you-can-help-fight-Alzheimers)

~~~
developer2
Forgive the ignorant question: if the chance spikes to ~50% by one's 80s, is
Alzheimer's _really_ a disease per se, or is it just a natural progression of
the brain degrading due to old age?

I mean, some people try to label the physical aging process itself as a
"disease", as if it needs to be "cured" via discovering a path to immortality.
Does Alzheimer's fit into that line of thinking, or is it truly a "real"
disease.

~~~
vaxman
Short Answer: Yes, both forms of Alzheimers are a "disease". Early Onset
Alzheimers may strike people as early as their 30s, though it may not be
diagnosed for a decade or more. This type of the disease has been definitively
linked to gene mutations. At the other end of the spectrum is what more
primitive people once called "senility" or "old age" giving rise to your
question --that form of Alzheimers strikes about half of people who are 85 or
older (though they will likely have started having symptoms in their 60s). The
(very) latest theories on this form of the disease is that it may be linked to
auto-immune responses related to various forms of Human Herpes viruses (for
example VZV, HSV1, etc.) and may even spread to brain surgeons during
operations. Disclaimer: I am not a medical doctor.

------
brudgers
[edit: what is in your control is quality of life. Yours. Those you love.]

Plan for long term care. Have a living will. Figure out who you want to have
power of attorney. Figure out who you want to have access to medical records
behind Hipaa. Choose a lawyer. Do all that stuff now while it's less messy and
there is a low probability of crisis. These are things that are good to do
even without diagnosis of a debilitating illness. They are good things to do
orthogonally to software engineering.

In the US, there is the Alzheimer's Association.
[https://www.alz.org/](https://www.alz.org/) similar groups are likely in
other places. There are resources. But they are stretched thin because
Alzheimer's lasts a long time without underlying morbidity. Again, acting
early matters because waiting lists are long.

Consider moving into an assisted living facility:

    
    
      with step up to nursing home with a memory care unit
    

That's not all of them. There is a high demand. There are waiting lists. There
is screening against people with a history of violence. Violence often
accompanies Alzheimer's. Not always. But often. Start managing your disease as
a disease don't use software engineer as an excuse. The search is going to
take time and effort. Right now, you get a full say. You get a chance to see
what is available and what it costs.

Well fuck, this all sucks. I'm sad to learn of your diagnosis. Saying "we all
die" probably doesn't help. What's in your control is some of the
circumstances in which your disease progresses. There's no manual. No
instruction book. And it's all going to involve institutions where your unique
circumstances are mostly irrelevant beyond your illness. Institutions that
deal with the normal problems. Institutions that can't act quickly when
someone calls for resources in crisis. Plan and act now for the people you
love.

~~~
my_first_acct
Yes to all that. I'll add: loved ones often have the idea that they will take
care of the afflicted one until the very end.

What they don't realize is that caring for an Alzheimer's sufferer, in the
later stages, can take years off the loved one's life. It is a hard,
depressing, 24-hour job to take care of all the physical needs of someone who
is no longer mentally there. Even worse if the caregiver is old or has health
issues.

So do your family a favor, if finances allow, and urge them, while you still
are able, to plan put you in an appropriate living arrangement (in an
institution, or with full-time paid caregivers) when the time comes.

And I'm sorry about your diagnosis. Best wishes.

------
wdb
Depending on where you live you might want to work on a living will, and start
talking to your GP regarding euthanasia options for when you don't want to
live with advanced Alzheimer's. Also consider getting in-house care, Alzheimer
is really hard on your family if they need to cake of you.

My father had Alzheimer's he was in 60s and it was so sad to see such a great
mind get lost. I was lucky that my mother was expert on this subject and help
set the procedures in my home country The Netherlands.

Also have a look if the area where you live organise the Alzheimer Cafés and
bring your close family along to get informed about the decease and meet
fellow sufferers and their family. It's great, my mother was one of the early
organisers of it: [http://www.alzheimerscafe.com/alzheimer-s-and-memory-
cafes.h...](http://www.alzheimerscafe.com/alzheimer-s-and-memory-cafes.html)

------
akeck
Get an estate lawyer ASAP and settle your estate documents while you still
have the mental capacity to do so. A relative of mine was incapacitated a full
three years before they passed away of the disease.

~~~
joshuaheard
That's the first thing I would do if I had the disease. You will need a will,
a power of attorney, and a trust if you have any major assets.

~~~
akeck
(Note: IANAL) Especially with the strict time limits before you go into
assisted living/nursing home. If you do estate docs/structure too late, you
can lose the estate to Medicare/Medicaid. Also, some states have "Filial
responsibility laws" which are another wrinkle.

------
sonofgod
Firstly, fuck. That sucks.

Here's my penny's worth, as someone with no actual experience of the disease:

From a programming and work perspective, make sure that other people have the
knowledge and skills to take over. Little things that should be obvious (and
ideally avoided up front), but only in hindsight, like write access to repos,
third-party accounts linked to email addresses. Now is a good time to audit
them.

And the bigger things, like "so how is this library Charlie wrote supposed to
work?" Now might be a good time to pair with someone unfamiliar with it to
make sure documentation is up-to-date and encompasses what the intention
behind the decisions was.

Depending on what you're working on, there might be a point in the future at
which you might be inadvertently capable of harm: accidently publishing
secrets, etc. I don't know enough to know how best to mitigate this, or even
if it needs worrying about at all in your work.

If you've got any projects that have downstream users, you might want someone
else to also have write access to the project. Managing their expectations on
the future may be of use to them.

Consider getting pictures/video of your favourite projects, people and places
in the work environment; I've heard these sort of external memory cues can be
helpful later on in sparking recall of memories.

Best of luck in what is going to be a trying time for you and your loved ones.

------
octokatt
I have a unique perspective on this, as I have had problems with cognitive
clouding, have all my life, but have still managed to be a good data
scientist.

First, do all of the responsible things listed below (estate attorney, eat
healthy, etc.), and remember that real life comes first.

For day-to-day with programming, start building in more of a buffer in your
timeline for bad days. Sometimes, despite your best efforts, you might find
yourself unable to grasp or find concepts mentally. It is frightening; if you
can, work on coping skills with a therapist. Getting anxious will usually make
things worse. Build a time buffer into more of your estimates so you can
balance good days with bad days. You might not be able to be reliable every
day, but you can achieve reliable results with the right planning.

Realize that taking good notes and documenting well is going to help someone
else take up a task on your behalf, but also help yourself if you're having a
bad day. It takes discipline to take the time to document when you're on fire
and having a good day. Work on doing it anyway.

Work with your team to ensure you have new, exciting work for the good days,
so you can keep your mental state fresh, as well as work that is in your
wheelhouse for bad days. This is both a reasonable accommodation as well as a
way for you to be more productive.

Coincidentally, these are all best practices anyway. This is just a new
application of them. I've gotten a lot more people on board by emphasizing
these as best practices, not specifically reasonable accommodations.

Please feel free to PM me if this was helpful.

------
jrace
My comments are based on working directly with many people who have had
Alzheimers (I used to be in Audiology).

Make time NOW to see your family. Let them know that you have been diagnosed.
Do not try and hide it from them.

Get your hearing tested now, and every year. If you have any hearing loss try
hearing devices. You will have increased issues getting used to hearing aids
as the disease progresses, and hearing/communication problems will only make
the Alzheimers symptoms worse for you and your family.

You will still have great days, enjoy them now. You will have tough days, and
having understanding family is very important.

------
guruz
There's a ton of info around that internet that Alzheimer's effects can be
reduced by switching diet and taking supplements.

diet - mediteranean [https://www.nia.nih.gov/health/what-do-we-know-about-
diet-an...](https://www.nia.nih.gov/health/what-do-we-know-about-diet-and-
prevention-alzheimers-disease)

supplements - [https://alzheimersprevention.org/4-pillars-of-
prevention/pil...](https://alzheimersprevention.org/4-pillars-of-
prevention/pillar-1-diet-supplements/) [https://examine.com/nerd/article/can-
vitamin-d-help-with-alz...](https://examine.com/nerd/article/can-vitamin-d-
help-with-alzheimers/)

sports - probably useful for all disease states.

Good luck.

Some food for thought:
[https://www.google.com/search?q=alzheimer's+as+part+of+metab...](https://www.google.com/search?q=alzheimer's+as+part+of+metabolic+syndrome)

------
dazag
Have you ever heard that Alzheimer is related to insuline resistance? You may
give it a try to a keto diet. Some doctors in the field are starting to call
it diabetes 3. I'm sorry that's all I can help with, wish you the best.

~~~
voisin
I agree with the above except for the conclusion. Forget Keto and all the
related negative effects and go for intermittent fasting. Read The Complete
Guide to Intermittent Fasting by Jason Fung as a good start.

~~~
dazag
I agree with the intermitent fasting but I don't know what you mean by
negative effects on keto. There are none, exactly the opposite, otherwise it
wouldn't be recommend for many conditions, as epilepsy or Alzheimer (brain
related disease). You can also call it low carb diet, or human ancestral diet.
But instead of denying possible treatments as easy as changing your diet a bit
to our asker here I would recommend him to do his own research instead.

------
poiuylkjh
have you ever had a full course of acyclovir/valcyclovir?

[https://www.nia.nih.gov/alzheimers/clinical-
trials/valacyclo...](https://www.nia.nih.gov/alzheimers/clinical-
trials/valacyclovir-mild-alzheimers-disease)

[https://www.medicalnewstoday.com/articles/322463](https://www.medicalnewstoday.com/articles/322463)

------
EvanWard97
Non-exhaustively, I would look into fasting and fasting-mimicking diets
([https://www.discovermagazine.com/health/the-growing-
science-...](https://www.discovermagazine.com/health/the-growing-science-
behind-a-fasting-treatment-for-alzheimers)).

~~~
paypalcust83
The current best scientific guesstimate is that there is no panacea. A suite
of lifestyle changes and maybe some medications would be the mostly likely way
to increase quality of life until there's an amyloid removal technique or
vaccine.

------
nuc1e0n
I hear that there's research that suggests that the herpes virus causes
Alzheimers by preventing breakdown of plaques in the brain. Maybe you could
try obtaining Remdesivir to see if it helps? Eating a diet rich in Omega-3
fatty acids like fish may also help.

------
pvaldes
Use a few minutes to take a long breath and start writing your will and
protect your loved ones from future legal issues, vultures and scammers.

This will gave you some peace of mind and will allow you to focus your energy
in other problems.

------
aurizon
[https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6408083/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6408083/)

------
kls
I don't have any advice, I have never had to deal with cognitive issues, but I
did want to comment to say that I am sorry for your struggles and I wish the
best for you.

------
sergeitsae
Maintain a good journal of daily activities and important events in your life.
There are plenty of journal note taking solutions that are available.

------
aurizon
Avoid Proton Pump Inhibitors (AKA PPI) often prescribed for hearburn and
excess acidity from aspirin etc. Aparently they are potent inhibitors of the
cholinergic cascade and seem implicated, Huge law suit looms

------
dailypeeker
Get a handy audio recorder (the one detectives use)

------
klubhammer
Hello. Everything that happens in the human body is biohemical in nature.

1\. Get pro-active 2\. Take a wormer. (Vermox in Europe) - 2x tablets per day
for 3 consecutive days. One tablet am, one pm. Repeat quarterly. 3\. Stop all
Dairy produce intake (As they say, PERIOD) 4\. High dose Vitamin C (Water
soluble so you piss it out fast) so 500mg per meal per day 5\. Ubiquinol or
less(er) effective Co-Enzyme Q10 - 2x tablets per day. One tablet am, one pm.
6\. Hot Yoga 3x per week or get on your bike and cycle 2 hours per day. 7\.
Take a daily Pro-Biotic 8\. Visit a nutritionist and get expert analysis of
your diet. 9\. Change your acceptance mindset and get active. Go to WAR.
Empower yourself. Become an expert on defeating Alzheimer's and report your
findings back to everone else. I wish you the very best of good luck. Now, get
to work.

~~~
jmpz
Why a wormer? And why stop all dairy?

~~~
klubhammer
Hello. You are addressing an illness on an open forum. You are already thinkng
outside the BOX! One day, there is the possibility that I will be facing your
challenge. I am a qualified Biochemist, now a db dev. You are able to read.
You are able to research. You are capable of analysing data. What do you think
your Doctor or a Medical Researcher is doing differently? Some of my best
friends are top Doctors. I know their strengths and limitations. Extremely
intelligent people. The internet is a researh tool. Use it. They do. Next,
addressing queries raised. There is a body of evidence that the worms we
humans ingest, excrete by-products, includng toxins, that are detrimental to
their host. Material analysed from worms in the human gut has been assessed to
be constituently similar to material that blocks myelin sheath in the neural
synapses. Regardless, if you have a pet, you should take a wormer. It'll never
happen to me!! I don't have worms. Yes you do. We are the perfect host for
parasites, including you. It is highly recommended by Vets. I am not here to
persuade nor defend. I am helping you to explore your options. Check
everything out for yourself. Now that it comes to mind, eliminate sugar
completely, fully, totally. Substitute with Xylitol. Not all sugars are
created equal. At the heart of DNA is Ribose, a sugar. De-oxy-
ribo(se)-Nucleic-Acid. kill the bad ones. Next, why stop Dairy? All human
disease emanates from the gut. You are introducing bacteria to your micro-
biome, some of which is causing you illness. Eliminate, investigate, evaluate
and record your results. Do this in conjunction with a human nutritionist.
Your health is in your hands. Exercise is the best medicine. The ancients:
"Physician, heal thy-self". Please, reserve your questioning for your journey
back to health. Read, assess, add, eliminate and strengthen your
understanding. Readers are leaders. There is a documentary on-line and on
Netflix called 'That Vitamin Movie'. It will inspire you. If I found it online
for free, you can too. C'mon baby! Get moving!! It would appear there are a
lot of very good people behind you here in this forum; Use us . . . God Bless.

