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

[Guest]

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.

The correct form depends on your genetics. Cyano made me feel a little better, but Methyl was fantastic for me....first time I have had red lips since the food supply supplementation began, I feel great, my memory recovered, And I am not hungry or anemic. Never did try the hydroxy form, as methyl is at the supermarket here. Work with a knowledgeable doctor, As you may have something else going on.

 

I am not going to vermont, just talking a long long walk if it gets to that.

[Donna]

I would research diet and exercise (mental and physical) that might help slow the progression. I would scrapbook and journal for my kids (I do this but am not keeping it as often or up to date as I'd like).

 

Other things I am trying to do now, even without a diagnosis of some horrible disease, because anything could happen to us at any time:

 

Live life to the fullest and make memories with and for my loved ones, visit places I would like to see, and have experiences I want to have. 

Enjoy nature and appreciate the beautiful things in the world.

Live simply as far as possessions but fill my life with family, travel, and experiences.

Read the Bible more often and pray more consistently.

Try not to let the little annoyances of life get to me. 

Try to see things from other people's point of view.

Have everything organized as far as paperwork. 

Edited January 15, 2017 by Donna

[Guest]

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.

Totally agree with last sentence.

 

I am now of an age where the "early deaths" are happening to my peers. Fact is, even if a couple doesn't die at the same time, there is nothing on this list that is not worth having in order. My dh and I have been astounded at the number of questions we have had to ask each other to complete these documents--and we are not done yet.

 

A beloved friend list her dh very unexpectedly...and very young. The fact that he was extremely organized has eased what is neberyheless a steep learning curve--and one that takes a lot of fortitude to climb, even in the midst of great sorrow and depleted energy.

[Janie Grace]

I would immediately carve out an hour a day to write. I would want to document my entire life, every single detail I could remember that has significance to me starting with my earliest memories. I wouldn't be a perfectionist about it; I would just capture as much as I could of this life I have lived, and I would leave it for my children.

 

I would probably get off Facebook, because I waste too much time there. Hmmm, maybe I should just do that now.  :glare:

[eternalsummer]

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. 

 

 

brilliant, I need to do this

[SparklyUnicorn]

I would research diet and exercise (mental and physical) that might help slow the progression.

 

 

I might do exactly the opposite and eat and drink all the crap I want.  Why bother.  Only reason I bother caring at this point is because I'd like to feel good during the amount of time I have left.  If I thought I basically had 15 years left...I dunno...I'd might not even want to live much longer.  Although I am skeptical that it is possible for that to be known. 

 

I guess I've seen enough people in my life who were alive but had no quality of life.  Quality of life is far more important in my mind.

[SparklyUnicorn]

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.

 

This is so bizarre to me.  That we put pets to sleep because we consider it the more humane thing to do.  Yet humans?  Even if the person is perfectly capable of deciding they don't want to go through that, people scoff at the idea. 

[SparklyUnicorn]

Eh, that's the benefit of being poor.  Most of this stuff doesn't pertain if you are poor and have nothing. 

 

 

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

 

[SparklyUnicorn]

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.

 

I'm being tested for B12 next week. I would be beyond surprised if I have an issue with B12.  If I do, it's because something has gone haywire with absorption.  Of course what on earth do ya do if that happens?

[luuknam]

I'm being tested for B12 next week. I would be beyond surprised if I have an issue with B12.  If I do, it's because something has gone haywire with absorption.  Of course what on earth do ya do if that happens?

 

My MIL got vitamin B12 injections for a year or something.

[Guest]

Haven't read the responses. The first thing I would do would be to finish my kids baby books 😢.

[SparklyUnicorn]

My MIL got vitamin B12 injections for a year or something.

 

Ah ok.

 

I just couldn't imagine a pill really working for that.

 

I'm crossing everything I don't have issues with iron.  That would really be a problem (and a huge surprise). 

[Sarah CB]

 

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

 

That is awesome.

SaveSave

[Donna]

I might do exactly the opposite and eat and drink all the crap I want.  Why bother.  Only reason I bother caring at this point is because I'd like to feel good during the amount of time I have left.  If I thought I basically had 15 years left...I dunno...I'd might not even want to live much longer.  Although I am skeptical that it is possible for that to be known. 

 

I guess I've seen enough people in my life who were alive but had no quality of life.  Quality of life is far more important in my mind.

 

Yes, I see exactly what you are saying. I guess it all depends on your personality.

 

I know people who were told they only had a certain amount of time to live (due to cancer or something similar) but who took care of themselves and ended up living much longer.

 

I would not mind changing my diet or exercising more or taking certain natural remedies but I might have to consider quality of life if it came to doing certain treatments that would destroy quality of life.  I have an elderly friend right now who was diagnosed with cancer two years ago and told he had six months to live. He decided he had lived a good, long life and wanted to enjoy the time he had left with his family so he decided to decline chemo but did change his lifestyle a bit...that was over two years ago and he has some rough patches but is still alive and happily enjoying every moment with his family and friends. I could see making that same choice.

[BlsdMama]

Do you mean medical and lifestyle or aside from those things?

Because, aside from those things:

 

Buy each kiddo a new Bible and highlight favorite scriptures, mark it up, doodle it.

Write each child a semi-annual letter until I couldnt.

Get family pictures taken on a regular basis and do some one on one photos with each child.

 

The goal being to memoralize a parents love so that when Im no longer here to tell them and show them, that they would still know.

[Guest]

Eh, that's the benefit of being poor. Most of this stuff doesn't pertain if you are poor and have nothing.

A lot of it doesn't. But my grandma died with $39 to her name and it would have helped her executor to have had the ones that DO matter in place.

[Guest]

...oops...dp 

 

[Laurie4b]

20 years out is quite possibly where I am now, given family history. 

 

I have done extensive research as a layperson. I also attend a family support group at a major university where we receive information. 

 

Many reputable sources you will read will not speak of prevention but rather delay. The hope is that if you can implement changes that would delay onset to say, age 110, that you would probably die of something else first. 

 

Genetics: Important, but not determinative. People with a mother with Alz are more likely to develop it than people with a father. People with the APOE 4 variant are more likely to develop it. However, for later onset, genes don't determine destiny. Some APOE 4 people never get it. Some people have plaques and tangles but don't get it. By the time you are in your 80s, about 1/3 of your peers have it. It is primarily a disease of aging. 

 

Finances: what most people fail to plan for is degeneration of their cognition. In other states, such as stroke or an accident, you can be competent one day and incompetent the next. With a dementia, there will typically be a lengthy period in which you could not be declared legally incompetent, but in which you are losing your financial judgment. During the earlier years, your family may not have a clue that anything is wrong; meanwhile, you could be investing in shady schemes, or giving huge amounts away that you wouldn't have done with a totally sound mind. You could even take up with a new squeeze and write your kids out of your will.  Talk with an estate planning/elder care attorney to determine a way to protect your finances from yourself. During this time you are also very open to influence,and can be easily steered. Some states allow living probate, for instance. You file your will and it cannot be changed after that without an order from a judge. 

 

 Make sure your family knows not to ignore early warning signs and doesn't react with denial. The first signs in my experience tended to be separated by a number of months and so were easy to write off, especially when your family member looks and acts pretty normal the rest of the time. It could be something like forgetting a really big event, or getting lost on the way home. It might not repeat itself, but it's the early warning. 

 

 

New medication: very little there. The drugs they currently have slow down the progression of the disease some--probably a number of months from my experience. Now that they can image Alz, on an MRI,  they may try the meds years before symptoms show and perhaps that will show more of a benefit. The current drugs , like Aricept, are cholinesterase inhibitors. They inhibit the enzyme in our brains that breaks down choline. That is very important for another recommendation below. 

 

It's important to remember that Alzheimer's has been cured in rats multiple times now and sadly, nothing has translated into real improvement in human beings. So keep that in mind when evaluating studies. Were they done on rats or people? 

 

LIFESTYLE CHOICES

 

Hearing: make sure you can hear well and if you can't, get hearing aids. Loss of hearing is associated with the onset of dementia. The thinking is that 1) that part of your brain is no longer being stimulated and it atrophies and 2) you withdraw from social activities, which are protective

 

Avoid anti-cholinergic medications if there is any way to do it:   Recall that current medications work by blocking the enzyme that breaks down choline in our brains: anti-cholinergic medications break down choline in our brains. They tear away at what you need to stay cognitively healthy. The research on this has been in for years but is not yet required on package inserts. Additionally, primary care doctors outside of geriatric doctors are often unaware of these effects. There is a list of drugs put out by the American Geriatric Society that is updated each year regarding drugs to avoid in elderly patients (aside from dementia, elderly patients process medications differently.) It's called the Beers list. This is a link to the 2012 list. It has been updated but can be hard to access: https://www.dcri.org/beers-criteria-medication-list/  Table 2 lists drugs by organ system. Anticholinergics are the first thin on the list. Table 3 lists drugs to avoid by condition: see Dementia and Cognitive impairment. Table 9 lists the anticholinergic by themselves. 

 

Both common prescription drugs and OTC drugs can be anticholinergic. For any of these drugs, you will have to weigh the cost'/benefit. If one antidepressant is anticholinergic but there is another class that are not, you may decide to switch.  Common anticholinergic drugs include: some classes of anti-depressant and anti-anxiety drugs & bladder control drugs, and drugs to reduce stomach acid. OTC includes antihistamines such as Benadryl and many  products to reduce stomach-acid

 

SLEEP: get enough, good quality sleep. If you snore or have any other indication of sleep apnea, address it as soon as possible. Your brain is being deprived of oxygen. 

 

There is very strong research support for the protective effect of PHYSICAL EXERCISE, primarily aerobic, but there is also some for resistance training. There is research support that exercise not only delays but can cause improvement in cognitive function once a person has mild cognitive impairment (the "mild" is part of a diagnostic category. It does not seem "mild" at all to a lay person ) and even early stages of the disease. So with regard to exercise after symptoms are noticed, there is research based on the scientific method of control group (often assigned stretching exercises, btw). Since the only definitive way to state that exercise delays or prevents the disease would be a large study where some people are assigned in middle age not to exercise, there cannot be that kind of research because it would be unethical given that it affects so many other body functions.  I was told wryly that exercise is about the only thing neurologists agree on. 

 

They know that exercise affects your brain. It increases the size of your hippocampus. It even causes NEW neural cells to generate in the hippocampus. 

 

Couple dancing and ping-pong are two activities that I have seen research that seems to show particular benefit. With both, there is the need to make split second decisions. With the dancing, you are integrating physical movement, quick decisions (either choosing where to go if you're the man or responding quickly to the lead if you're the woman) , and music. 

 

http://journals.cambridge.org/action/displayAbstract?fromPage=online&aid=10033579&fileId=S135561771500079X

Moderate exercise helped.

http://journals.cambridge.org/action/displayAbstract?fromPage=online&aid=9099527&fileId=S1041610213001385

general review is that exercise helps slow the progression of Alzheimer’s

https://www.sciencedaily.com/releases/2016/03/160323185527.htm

 10 years difference in cognitive age between light to no exercise vs. moderate/intense exercise in people over 65

https://www.alz.org/aaic/releases_2015/Thurs1130amET.asp exercise more powerful than meds  (News release from international conference on Alzheimer's) 

http://www.pnas.org/content/108/7/3017.abstract exercise in older adults inceased hippocampus in spatial memory region

 

 

http://www.livescience.com/50883-brain-research-shows-exercise-boosts-imagination-and-memory.html

 

http://brain.oxfordjournals.org/content/early/2016/02/11/brain.awv407  amazing collection of studies

 

http://www.nbcnews.com/health/aging/better-treatment-alzheimers-exercise-n397461

 

There are more studies on exercise. Googling and looking at scholarly articles will get you more. 

 

FOOD

 

There is research support in humans for the Mediterranean diet, the DASH diet,  and the MIND diet. The Mediterranean diet has the most support. None of those are anti-whole grain. Perlmutter's book is anitgrain, but it appeals almost entirely to rat studies. (Alz. has been cured multiple times in rats. It hasn't translated to human progress, so take any rat studies with a grain of salt.)  The MIND diet was designed based on dietary habits of adults and comparing those who did or did not get dementia. Eating 3 servings of whole grains daily was correlated with NOT developing dementia. It's easy to google the MIND study to see how it was done. I think the big take-homes from that are that eating a serving of leafy greens daily and blueberries twice a week were also correlated with good cognitive health.  

 

Short term, people with cognitive impairment show reduction in cognitive skill after a particularly high carb meal. 

 

Avoid sugar/junk food. Eat natural fat. Your brain needs fat. 

 

Someone asked up thread if a person's diet is affected by dementia and if that is the source of the info. It is true that previous inhibitions about certain kinds of food may ease up with dementia; also people often forget to eat. However, many of the studies were conducted in countries with years of health data and the diets were in place before people did or did not develop dementia. 

 

There is a correlation between low VIt D and low Vit B 12 and Alzheimer's. Whether the low blood levels are the cause or an effect of a common agent is not known. 

 

Obesity at midlife is correlated with Alzheimer's. It's important to lose it if at all possible. 

 

http://www.rd.com/health/conditions/dementia-alzheimers-survey/#ixzz3dQDttLpc

Several health habits correlated with lowering risk: exercise, sleep, Mediterranean diet, social connection, mental stimulation

http://www.alz.org/news_and_events_lifestyle_changes_help_reduce_risk.asp

http://www.wsj.com/articles/a-diet-might-cut-the-risk-of-developing-alzheimers-1429569168

MIND diet . Special emphasis on blueberries and green leafy veges

 

Stay socially connected: people with strong social connections are at less risk of dementia.  

 

Keep your brain growing:  The higher the level of education, the less the risk of dementia. The more complex the person's job was, the less the risk of dementia. The theory is that our brain grows in response to cognitive tasks and that these extra connections provide "cognitive reserve." So in my laywoman's words, if your brain has only 1 or 2 roads it can travel to get from point A to point B and the plaques and tangles set in, you go down more quickly than if your brain has 16 connective routes between point A and Point B. Continue to work your brain after retirement. 

 

There is controversy over "brain games." They may or may not help. The key issue is whether the skills you develop during the game transfer to real life or not. There is some evidence that some do. 

 

Activities that seem particularly helpful:

being bilingual or multilingual. (Whether learning multiple languages later in life helps is less clear than if you grew up with more than one. It's that brain reserve and the need to make quick sorting decisions constantly about what word you will use to express something.)

Playing a musical instrument.

Memorizing things. When we memorize, our hippocampus grows in size. (You can see this temporarily , too. For instance, students studying for law boards will have an increase in the size of the hippocampus. This diminishes over time, but when you memorize, it grows.) 

 

STRESS; There is a correlations of high intensity stress, particularly at mid-life, and dementia. Do what you need to to handle it. 

 

 

Nearly everything (except the exercise as treatment for current cognitive issues) are done with statistics and large populations, so they may not apply to a particular person. As someone at risk, however, for the love of my family members, I am doing everything reasonable that I can to delay the onset. There is nothing woo-woo about getting regular exercise, eating lots of fruits, veges, avoiding sugar, keeping up social connections, attending to stress, and keeping an active mind.I figure it will provide better quality of life in and of itself. While nothing "new" so to speak, having the motivation to avoid Alzheimer's can help motivate me to do those things that I might know I should do, but put off till later. It keeps me "on the wagon." 

 

If you want to look a bit further outside the box, you can look at the work of Bredesen. I am following it, but haven't jumped on board. 

http://www.aging-us.com/article/NjJf3fWGKw4e99CyC/text

 

http://www.anti-agingfirewalls.com/2015/02/18/a-simple-comprehensive-plan-to-prevent-or-reverse-alzheimers-disease-and-other-neurodegenerative-diseases-part-1-the-plan

more explanation of bredesen

 

I haven't posted all the research links. I just don't have time, but every tip I've posted was from sources that appeared to be mainstream. Much of it has been reproduced in research. 

Edited January 15, 2017 by Laurie4b

[Guest]

My best friend did not have 15-20 years. She is forty-seven, has early onset Alzheimers, and is my hero.

 

She blogs about it here:

 

https://stilllifewithdementia.wordpress.com/

 

Some of what I learned was to avoid alz.org, read Kate Swaffer and other recommendations on her site, get on a waiting list for a service dog early, use notebooks and post-it notes to "be my own caregiver", warn my family about psych medicines that have a black box warning but are frequently used for the convenience of caregivers, spend time with grandchildren if I had any, and to research better final exit plans than what she will probably get stuck with.

Edited January 15, 2017 by Guest

[Laurie4b]

Ah ok.

 

I just couldn't imagine a pill really working for that.

 

I'm crossing everything I don't have issues with iron.  That would really be a problem (and a huge surprise). 

 

The problem with people who are not absorbing well from their food is in their stomach. There are pills that can be dissolved under the tongue. That helps the Vit B 12 go directly to the blood, which is what the shots do. 

[Ausmumof3]

Is there actual credible evidence this helps?

I believe the studies linking it to aluminium have since been called into question.

[Joules]

My MIL got vitamin B12 injections for a year or something.

 

Yep, I was supposed to go for them every two weeks.  I wasn't super compliant so now I have an Rx and syringes and have to do it myself

[Guest]

Just a word on high B supplementation - my cousin presented this year with severe neuro symptoms, and after having multiple tests they ruled out everything (tumor, MS, ALS etc) and discovered that all her symptoms were related to Vit B toxicity. She came off the high doses of B and has radically improved to the point of no longer having neuro symptoms.

This happened to me a number of years ago.

 

ETA: This event was the reason I stopped self-doing and started seeing a qualified professional who has helped me immensely using most of the same THINGS I was using but in proper proportions.

[SparklyUnicorn]

A lot of it doesn't. But my grandma died with $39 to her name and it would have helped her executor to have had the ones that DO matter in place.

 

Nope, she didn't have any money.  My sister wanted her wedding ring which I thought was weird, but I just said go ahead.  My dad gave me one of her old cookbooks because he thought I'd want it.  That was it.

 

We have no family though.  So nobody is going to come out of the woodwork and fight over stuff.  If my sister wants to take whatever my dad has left by all means I would not fight her on that. 

[SparklyUnicorn]

Just a word on high B supplementation - my cousin presented this year with severe neuro symptoms, and after having multiple tests they ruled out everything (tumor, MS, ALS etc) and discovered that all her symptoms were related to Vit B toxicity. She came off the high doses of B and has radically improved to the point of no longer having neuro symptoms. 

 

Interesting.

 

This stuff is so tricky.

[Guest]

Nope, she didn't have any money. My sister wanted her wedding ring which I thought was weird, but I just said go ahead. My dad gave me one of her old cookbooks because he thought I'd want it. That was it.

 

We have no family though. So nobody is going to come out of the woodwork and fight over stuff. If my sister wants to take whatever my dad has left by all means I would not fight her on that.

I know what you mean about the things. Most of the help of having the papers in order was that it speeds things up and requires less effort from the executor.

 

I always joke that my side of the family can hold a family reunion in my sedan. And my sister and I get along great. And we have one kid. So it's not that it's a family middle--it's that it simplifies things for those left behind. That's all. :0)

[wintermom]

Aerobic exercise is the only thing I'm aware of that has significant and well established support in terms of preventing or helping with dementia. Especially if it's undertaken from mid life on. 

 

It is a disease of age, so it makes sense as we live longer, we see more cases.

 

But we've also become a society that doesn't move.

 

Move more is the best advice. Humans are designed to be active. Not to sit, and to ride around in cars. You can avoid all the grains in the world, but you still need to move. 

 

I want to like this a million times.

[wintermom]

Here's a pretty good general video on the health benefits of exercise. Minute 10:25 addresses alzheimer's where apparently exercise is the only "drug" that works. And the great thing is that exercise is an amazing "drug" for so many more health issues, too.