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Ask HN: I'm a software engineer diagnosed with Alzheimer's,how should I prepare?
84 points by charlieporter on May 12, 2020 | hide | past | favorite | 36 comments



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.


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.


> "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!


Do you have sources for any of the recommendations here?


This is all verbally transmitted information by doctors. I have a habbit of asking doctors what a persons daily routine should be and most have said something similar. Most Ayurveda doctors will agree with this as well.


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...


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/How-you-can-help-fight-Alz...


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.


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.


[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/ 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.


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.


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...


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.


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.


(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.


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.


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.


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.


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...

supplements - https://alzheimersprevention.org/4-pillars-of-prevention/pil... https://examine.com/nerd/article/can-vitamin-d-help-with-alz...

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...


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.


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.


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.



Non-exhaustively, I would look into fasting and fasting-mimicking diets (https://www.discovermagazine.com/health/the-growing-science-...).


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.


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.


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.



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.


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


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


Get a handy audio recorder (the one detectives use)


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.


Never, listen to anyone offering advice like this, go see a doctor, read up on the disease from reputable organizations such as the Mayo Clinic.

There are realities that must be faced, and planned for, you'll have plenty of time to "go to war" but for now, make sure you and your loved ones are as prepared as possible.


Why a wormer? And why stop all dairy?


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.




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