Jump to content

Menu

If you had 15-20 years left, of memory, what would you do?


Janeway
 Share

Recommended Posts

I would research what the current wisdom is about slowing Alzheimer and what suggestions for lifestyle modifications I could adopt.

I would make sure to have my affairs in order, POA, will, finances sorted out.

Other than that, I would continue to lead a normal and full life and not change anything. And I would hope that I can fall off a mountain before things get too bad, so I guess as the time approached, my climbing would become a bit more adventurous and less risk averse.

Edited by regentrude
  • Like 20
Link to comment
Share on other sites

what kind of "strict diet"?

I have just begun looking into this, but I believe the focus is in cutting sugar and upping the leafy greens.

 

This link describes an initial study. I believe it was actually posted in this forum by another boardie within the last few months.

 

http://health.usnews.com/best-diet/mind-diet

Edited by Seasider
Link to comment
Share on other sites

In addition to the things listed above, I would also beef up the things I do to keep my brain engaged.  I do some daily word puzzles and do math in my head and stuff...I'd research other ways to keep my brain engaged.  Diet, exercise, brain engagement...all important. 

 

Mostly I would enjoy my life and make sure my loved ones know I love them. I'm a letter writer so I'd be sure to write letters.  My mil is in the later stages of dementia and some family members seem to have a tough time remembering that THIS is not who mil is- it's the disease, not her. 

 

Dementia doesn't just suddenly appear so I'd get affairs in order asap. I would also be open with my kids about it.  We're dealing with the fallout from family not being willing to talk about it in the early stages. 

 

 

  • Like 1
Link to comment
Share on other sites

I would get all the legal stuff in place, including medical directive and the list of who I want to give what if my personal items. I would simplify my books and make a Patty Joanna Operating Manual with index and what to do, in order and tell where All the Things are. This book would include all my passwords. And getting the photos in order...not just for my family but for me. I watched my MIL "talk" to my FIL of their life memories through their photo albums.

 

I would write a letter to those who have POA to tell them that when I start to be erratic or dangerous, to do what needs to be done to protect myself and others; eg. "Take the car keys if I don't have the means to give them up myself. Even if I'm mad at you when I'm losing myself, in my right mind now I thank you in advance. Get me to church as often as you and I are able."

 

I would sing a lot.

 

And I would spend a lot more time in prayer and worship, in hopes that my soul would be transformed to be kind and accepting of what is given me...even as that "me" is likely to become inaccessible to those around me.

Link to comment
Share on other sites

My mom's mother and grandmother both had full-on Alzheimer's by the time they were 80, so she's been feeling like that for a while.

 

She volunteered to become part of a brain study, took up ballroom dancing (which has been shown to delay the onset of Alzheimer's), and spends a big chunk of her time either planning or going on travel junkets all over the world with my dad.  When she's not traveling she's constantly hosting houseguests (mostly reciprocity for all the places she stays elsewhere).  She doesn't scrapbook but takes a zillion pictures and goes almost weekly to the Apple store where they show her how to sort and manage and manipulate them.

 

She'll be 80 this year, and so far so good (knock wood!)  My great-grandmother died when I was 18 and my grandmother after I'd had my first kids, so I remember all those years of Alzheimer's.  I'm so hoping my mom manages to break the cycle.  Go mom!

  • Like 8
Link to comment
Share on other sites

I have just begun looking into this, but I believe the focus is in cutting sugar and upping the leafy greens.

 

This link describes an initial study. I believe it was actually posted in this forum by another boardie within the last few months.

 

http://health.usnews.com/best-diet/mind-diet

 

I would like to know more how they determined "lowered Alzheimer's risk". Was that based purely on statistics? Were genetic predispositions factored in? How did they select the 900 people to follow?

Also, as always in these cases: was there correction for correlation vs causality? I.e. what about people whose cognitive decline caused them to be unable to adhere to the diet?

 

My MIL had Alzheimers, as did her mother, so very likely a genetic component.

  • Like 2
Link to comment
Share on other sites

I would get all the legal stuff in place, including medical directive and the list of who I want to give what if my personal items. I would simplify my books and make a Patty Joanna Operating Manual with index and what to do, in order and tell where All the Things are. This book would include all my passwords. And getting the photos in order...not just for my family but for me. I watched my MIL "talk" to my FIL of their life memories through their photo albums.

 

I would write a letter to those who have POA to tell them that when I start to be erratic or dangerous, to do what needs to be done to protect myself and others; eg. "Take the car keys if I don't have the means to give them up myself. Even if I'm mad at you when I'm losing myself, in my right mind now I thank you in advance. Get me to church as often as you and I are able."

 

I would sing a lot.

 

And I would spend a lot more time in prayer and worship, in hopes that my soul would be transformed to be kind and accepting of what is given me...even as that "me" is likely to become inaccessible to those around me.

I beyond like this post! Thank you! All great advice.

Link to comment
Share on other sites

I would like to know more how they determined "lowered Alzheimer's risk". Was that based purely on statistics? Were genetic predispositions factored in? How did they select the 900 people to follow?

Also, as always in these cases: was there correction for correlation vs causality? I.e. what about people whose cognitive decline caused them to be unable to adhere to the diet?

 

My MIL had Alzheimers, as did her mother, so very likely a genetic component.

Your specific questions are ones I cannot answer, however, plaque in the brain does contribute to Alzheimer's-type dementia, and vascular dementia is associated with circulation problems. It makes total sense to me that there is a dietary connection worth researching further.

Link to comment
Share on other sites

In addition to looking at prescription possibilities, I would do a lot of reading/in-depth googling.  I'm not sure how well the role of inflammation has been established, but I have come across it.  I might look for an introductory book on the topic of alzheimers in general and then branch into additional reading on the potential inflammation angle.  I'd add to the reading list possible anti-inflammatories in the context of alzheimers like artemisinin (the antimalarial) e.g. https://www.ncbi.nlm.nih.gov/pubmed/23406388 and curcumin e.g. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2781139/ (both of which are available OTC).  Note that the above are controversial and evidence may be limited; I haven't looked, just came across these randomly in other reading.  I'd also search pubmed on a regular basis to get an idea of what's on the horizon.

 

Edited by wapiti
Link to comment
Share on other sites

I would get all the legal stuff in place, including medical directive and the list of who I want to give what if my personal items. I would simplify my books and make a Patty Joanna Operating Manual with index and what to do, in order and tell where All the Things are. This book would include all my passwords. And getting the photos in order...not just for my family but for me. I watched my MIL "talk" to my FIL of their life memories through their photo albums.

 

On the practical side of things, my mom has long had her financial stuff in order, and has a list of where everything is (my dad's still around, but mom's always been in charge of that side of things).    And she made sure to buy long term care insurance - both my grandmother and great-grandmother had Alzheimer's for a good decade.  Unfortunately it doesn't seem like plans as good as my mom bought are around anymore.  Plans that cover a year or two of care don't cut it.

  • Like 1
Link to comment
Share on other sites

Both of my parents had vascular dementia and died in their mid 70's of strokes. That's twenty years away for me. 

 

I manage my cholesterol and blood sugar very carefully and have full bloodwork and a visit with my primary every 4 months. I take fish oil and a baby aspirin every day. I'm super-super picky about what I eat other than a single cheat meal once a week. And I do cardio, weights, and yoga, so I'm at the gym at least 5 times a week.

 

In other words, I'm doing what I can. 

  • Like 4
Link to comment
Share on other sites

On the practical side of things, my mom has long had her financial stuff in order, and has a list of where everything is (my dad's still around, but mom's always been in charge of that side of things).    And she made sure to buy long term care insurance - both my grandmother and great-grandmother had Alzheimer's for a good decade.  Unfortunately it doesn't seem like plans as good as my mom bought are around anymore.  Plans that cover a year or two of care don't cut it.

 

No kidding on the plans.  And it is *super* expensive to get this care, and it's not always an option to just have (name) live at home.

 

My mom set up her filing cabinet with all the papers in a row and instructions in each file:  What to do with this.  The first file is called "Start Here."  She's so terrific!

 

I'm working on doing the same thing digitally, and making sure that two trustworthy people much younger than I have the passwords.  My friend who is a lawyer says that their firm makes *way* too much $$$ per hour tracking down things simply because no one left a password behind.  Ugh.

 

Edited to correct egregious grammar error

 

Link to comment
Share on other sites

I would like to know more how they determined "lowered Alzheimer's risk". Was that based purely on statistics? Were genetic predispositions factored in? How did they select the 900 people to follow?

Also, as always in these cases: was there correction for correlation vs causality? I.e. what about people whose cognitive decline caused them to be unable to adhere to the diet?

 

My MIL had Alzheimers, as did her mother, so very likely a genetic component.

 

I read The Secret Life of the Grown-Up Brain recently.  If I remember right (Ha!), meta-analysis showed no effect of diets (as long as they aren't so horrendous they make you ill).  The positive things that correlated with less dementia (and might slow/prevent it) were education (including continuing education), positive social interaction, and regular exercise.  

 

 

It does look like the MIND diet will be studied more rigorously in the future:

 

 

When the MIND diet first appeared in the 2016 Best Diets rankings, experts praised it for presenting new research based on the benefits of a healthy diet pattern for reducing Alzheimer's risk. However, they pointed out that the research was in early stages and longer, more-controlled studies were needed. In April 2016, the National Institute on Aging awarded a $14.5 million grant to the Rush University-led team to launch a randomized, five-year clinical trial of the MIND diet that includes 600 older adults, some who will undergo brain scans to gauge its protective effects.
Link to comment
Share on other sites

Try to undo the prediction?

 

Stop cooking with foil and be more particular about aluminum use. Be more stringent about my deodorant choices. Find out what brain exercises slow it down (I think crossword puzzles and such) and spend more time doing that type of thing.

 

Pretty much stuff I should be doing now and do think about now sometimes, but don't always follow. For example, in the back of my head I think it's bad to use foil but I use it in my toaster oven a lot.

Link to comment
Share on other sites

I read The Secret Life of the Grown-Up Brain recently.  If I remember right (Ha!), meta-analysis showed no effect of diets (as long as they aren't so horrendous they make you ill).  The positive things that correlated with less dementia (and might slow/prevent it) were education (including continuing education), positive social interaction, and regular exercise.  

 

 

It does look like the MIND diet will be studied more rigorously in the future:

 

 

The thing is, scientists are now characterizing Alzheimer's as possibly "Diabetes Type 3." As such, a low-sugar, low-carb diet makes sense to me. 

 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2769828/

  • Like 3
Link to comment
Share on other sites

The thing is, scientists are now characterizing Alzheimer's as possibly "Diabetes Type 3." As such, a low-sugar, low-carb diet makes sense to me. 

 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2769828/

I agree. I highly recommend the book Grain Brain by Dr. David Perlmutter, a neurologist and Fellow of the American College of Nutrition. After working with dementia patients for years, he has come to the conclusion that consumption of sugar, grains and other carbs contributes to the development of dementia.

  • Like 1
Link to comment
Share on other sites

I agree. I highly recommend the book Grain Brain by Dr. David Perlmutter, a neurologist and Fellow of the American College of Nutrition. After working with dementia patients for years, he has come to the conclusion that consumption of sugar, grains and other carbs contributes to the development of dementia.

 

Why are we seeing record highs when traditional diets are far more grain based than a modern diet (simply because not much else was available)? Is it only because people used to die before they got Alzheimers?

Link to comment
Share on other sites

Why are we seeing record highs when traditional diets are far more grain based than a modern diet (simply because not much else was available)? Is it only because people used to die before they got Alzheimers?

One theory is the folic acid supplementation in grains and prenatals. 40% of the population has a genetic variation that means they can't process the folic acid, which among other things means they aren't getting the b12 they need. My friends with autoimmune disorders found it out accidently by giving the Wheat Belly recommendatiins a try, then 23andme results gave more hints. Their lives went from night to day by dropping enriched grains and making sure they had the greens and correct form of b12 supplement.

Link to comment
Share on other sites

Is there actual credible evidence this helps?

 

I'm not positive. I'd have to do some digging. We could be waiting years for answers to many of my health questions. I tried to get away from aluminum before, but it's hard. I mean in order to replace all my aluminum is a nightmare. I wish they'd make a bundt cake form that wasn't aluminum but the only one I've seen is silicone which doesn't really appeal to me.

Link to comment
Share on other sites

My cousin has early set Alzheimer's at 48.  They live near a large University's medical center, so she's involved with a program there.  They didn't have 15 or 20 years notice, it was kind of a sudden shock.

 

I've heard that lowering blood sugar is believed to help, so I'd ask about metformin.  

 

As for memories, I'd make a bucket list and just live.  I'd try to do as much with music because they've found out that music/songs can "bring people back."  So I'd work on associating songs with things and people in hopes that may help.

Link to comment
Share on other sites

Other than having legal documents and care guidelines in order, I don't know that I'd do anything differently.

 

I already have a blank journal in which I write periodic notes to DS (memories of his childhood, etc.). I live a decent lifestyle; I probably wouldn't modify it much in hopes of a few more good months in 20 years.

Link to comment
Share on other sites

My cousin has early set Alzheimer's at 48.  They live near a large University's medical center, so she's involved with a program there.  They didn't have 15 or 20 years notice, it was kind of a sudden shock.

 

I've heard that lowering blood sugar is believed to help, so I'd ask about metformin.  

 

As for memories, I'd make a bucket list and just live.  I'd try to do as much with music because they've found out that music/songs can "bring people back."  So I'd work on associating songs with things and people in hopes that may help.

That is part of why I wrote I want to sing more and go to church more.  About 80% of our services are sung/chanted, including the prayers, and perhaps that will help, if I have more than one part of my brain activated and involved.  

 

A brain guy (double PhD, bigshot in the field) used to go to my church (pre-my-Orthodoxy) and he told a LOT of stories about how people can be reached through the music part of their brain when the language part fails.  

 

I had a friend (MY AGE +5) encounter a kind of dementia that first affected his language centers.  He was incredibly intelligent and yet within a very short time, he had a big struggle finding his words.  He did intensive therapy (his sister was a therapist for this sort of thing!) and prolonged his ability.  Still it could take him 5 minutes to ask me how I was doing.  He could understand fine...just not speak back.  Anyway, one time he wanted to tell my son a word that described him...but he couldn't find the word.  But he found it in the part of his brain that knew GREEK, so he wrote it in GREEK, translated it from the WRITING part of his brain into English, and gave my son a great compliment.  My son carries that piece of paper in his wallet.  

 

Our beloved friend departed this life 2 years ago less 10 days.  My dh gave the eulogy at his funeral, and told this story, among other things.  

 

I'll tell you this:  if I ever meet with dementia, I hope to God I will be like him, who was able to accept with grace that which he knew was happening to him, and who was surrounded by a family that he had loved well and who paid it back at his ending.  May his memory be eternal and his rest with the saints. 

Link to comment
Share on other sites

One theory is the folic acid supplementation in grains and prenatals. 40% of the population has a genetic variation that means they can't process the folic acid, which among other things means they aren't getting the b12 they need. My friends with autoimmune disorders found it out accidently by giving the Wheat Belly recommendatiins a try, then 23andme results gave more hints. Their lives went from night to day by dropping enriched grains and making sure they had the greens and correct form of b12 supplement.

What is the correct form of B12. I still can't figure this one out. I got an awesome raw food one but it made my heart beat rapidly and caused flushing. I didn't realize it had niacin in it when I bought it.

 

My mom died at 68 of dementia, her sister died at 70 of vascular dementia, their mom had dementia when she died in her 80s and my grandfather died of Alzheimers. This coupled with the fact that I have had many concussions, one severe and life changing, leads me to believe I know what my eventual fate will be. My memory never recovered and I haveany cognitive issues at age 53.

 

What would I do? Move to VT before it progresses too much. I told my family this is my desire.

Link to comment
Share on other sites

And because this is something I think of often, I have started a bucket list and am checking things off as I go. This spring/summer I intend to start to hike the 4000 foot mountains in NH and I won't stop until I've hiked them all. I am also joining a women's camping group. I want to buy a retro style camper and take off for a.few weeks each year by myself or with a VERY few select people. These glampers meet all over the US and I have been studying campers for a good 6 - 8 months now.

 

I gave to my family my entire life and now want to do for myself. I am blessed that my family fully supports this and is thrilled to see me doing things for myself.

 

One other thing I did on my bucket list was to adopt a kitten. I always adopt harder to place animals. I felt guilty so I also adopted her mother and another boy kitten. It yook dh months to discover that I had 4 cats. :D

  • Like 5
Link to comment
Share on other sites

I basically live like I might die tomorrow.  Seriously.  I've got this list in my mind of the stuff I want to do and I just keep plugging along at it. 

 

I don't know what I'd do.  I'd prefer to not know to be honest.  What good would it do for me to know that?   And you figure while that might be my reality 15 years from now, I might also drop dead tomorrow from something else. 

 

 

  • Like 2
Link to comment
Share on other sites

I basically live like I might die tomorrow.  Seriously.  I've got this list in my mind of the stuff I want to do and I just keep plugging along at it. 

 

I don't know what I'd do.  I'd prefer to not know to be honest.  What good would it do for me to know that?   

 

I would also prefer not to know.

 

To me, the most heartbreaking scene in Still Alice was when she got to the point that she could no longer answer her memory questions and opened the file she herself had prepared in anticipation for that day because she know it was coming. She had made a video giving herself instructions how to commit suicide - but her condition was so advanced that she was unable to follow the simple directions.

All the knowing did not help.

 

ETA: But once it started, it would be nice to know on what precise timeline the disease would be progressing so that one could know what the latest possible time would be to be lucid enough to act. 

Edited by regentrude
  • Like 4
Link to comment
Share on other sites

I would also prefer not to know.

 

To me, the most heartbreaking scene in Still Alice was when she got to the point that she could no longer answer her memory questions and opened the file she herself had prepared in anticipation for that day because she know it was coming. She had made a video giving herself instructions how to commit suicide - but her condition was so advanced that she was unable to follow the simple directions.

All the knowing did not help.

 

A coworker of my husband found out he had some condition that would get increasingly worse very quickly (wasn't curable, there would be brain damage, memory loss, etc).  I don't know what it was.  He did kill himself.  He wasn't very old either.  It was really sad.  He was such a cool smart guy.  But then, I can't really blame him. 

  • Like 1
Link to comment
Share on other sites

A coworker of my husband found out he had some condition that would get increasingly worse very quickly (wasn't curable, there would be brain damage, memory loss, etc).  I don't know what it was.  He did kill himself.  He wasn't very old either.  It was really sad.  He was such a cool smart guy.  But then, I can't really blame him. 

 

My cousin died a horrible prolongued death from ALS. Horrible for her, horrible for her family. 

There are diagnoses with which I would not want to live. We would not let a cat suffer like this.

Edited by regentrude
  • Like 2
Link to comment
Share on other sites

I would get genetic testing done

 

I was kind of assuming this was how the person knows they've got 15-20 years. Like, their parent or something has got relatively early Alzheimer's, so they got testing done. Not sure how else you'd know... I don't believe in psychics.

 

Personally, I think I might go back to finish my college degree now (rather than wait until my youngest is in high school), and possibly get a graduate degree. I'm not entirely sure what degree I'd finish - I have quite a number of degrees I could finish in 30 hours (I'd have to do 30 hours anyway if I transfer, and 28 hours of 4.0 average to get a 3.0 average if I don't transfer, which I'd likely need to get into grad school). I have taken a number of neuroscience and biomedical science classes, so I might decide I want to do that and specialize in Alzheimer's... or I might decide I want nothing to do with that. I don't know. I don't want to get full-blown Alzheimer's at 47-52. I guess if it's full-blown by that point it'd already be there but less severe before that point. Blegh.

Link to comment
Share on other sites

For those who are serious about this, here is a list of the 25 docs you need to get ready before you die.  I have done this by making a notebook with page protectors in it, but now I am going to scan the documents, front and back, and put them in a location on my hard drive (telling my bfs and dh where that is) so I can ALSO send a copy to my lawyer and executor.  And we have a fireproof safe.  

 

Here's the list.  

 

The Twenty-five Documents You Need before You Die

Index to Key Documents

Document Scans in Related Folders

 

 

Marriage & Divorce:

1. Marriage License

2. Divorce papers

 

Life Insurance and Retirement

3. Life Insurance Policies

4. Individual Retirement Accounts

5. 401k Accounts

6. Pension Documents

7. Annuity Contracts

 

Health Care Confidential

8. Personal & Family Medical History

9. Durable Health-Care Power of Attorney

10. Authorization to Release Health-Care Information

11. Living Will

12. Do-Not-Resuscitate Order

 

Bank Accounts

13. List of Bank Accounts

14. List of all User Names 

15. List of Safe-Deposit Boxes

 

Proof of Ownership

16. Housing, Land and Cemetery Deeds 17. Escrow Mortgage Accounts

18. Proof of Loans Made and Debts Owed 19. Vehicle Titles

20. Stock Certificates, Savings Bonds and and Brokerage Accounts

21. Partnership and Corporate Operating Agreements 

22. Tax Returns

 

The Essentials

23. Will

24. Letter of Instruction

25. Trust Documents

Link to comment
Share on other sites

We have most of these documents prepared - but not because of Alzheimer worries. Chances that both my spouse and I become incapacitated simultaneously from dementia are very slim. If we both die or become incapacitated, it is far more likely to be the result of a vehicle accident. Which can befall any of us at any age , so it is always prudent to have one's affairs in order.

Edited by regentrude
  • Like 2
Link to comment
Share on other sites

But that would not explain the rise of Alzheimers in countries where flour and baked goods are not routinely enriched with folate and where pregnant women are not routinely taking prenatal vitamins.

It would depend on their genetics and their diet. If they have a variation, they may not have a high enough b12 level as their diet may be insufficient. If they are poor,they may just not have a good enough diet.

 

The folic acid supplementation isn't all negative, for some people stroke risk is reduced greatly..a.person particular genetic variations matter.

Link to comment
Share on other sites

I was kind of assuming this was how the person knows they've got 15-20 years. Like, their parent or something has got relatively early Alzheimer's, so they got testing done. Not sure how else you'd know... I don't believe in psychics..

Genes aren't destiny. Entirely possible to have the genetic variation, but never have it turn on, just like the brca gene. I assumed they had the first signs, and figured 15 to 20 bc of what relatives experienced.
Link to comment
Share on other sites

Why are we seeing record highs when traditional diets are far more grain based than a modern diet (simply because not much else was available)? Is it only because people used to die before they got Alzheimers?

 

That's probably part of it. It's certainly why we're seeing a rise in cancer rates - the older you are, the more likely it is you'll develop cancer. You can't die of cancer if you die of cholera first, or measles, or childbirth, or some sort of horrific accident.

 

To answer the OP, I'd probably cry. A lot. Dementia legit scares me. Thankfully, that's one condition that does not run in my family at all. I do hope this is all hypothetical.

  • Like 1
Link to comment
Share on other sites

Genes aren't destiny. Entirely possible to have the genetic variation, but never have it turn on, just like the brca gene. I assumed they had the first signs, and figured 15 to 20 bc of what relatives experienced.

 

I guess it's possible. My grandfather went from nothing to full-blown didn't remember he'd ever been married or had kids in less than a couple of years. If I started getting symptoms now though, I wouldn't make any assumptions, because I'm more than 5 decades younger, so I'd expect the cause etc to be completely different.

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...