3/4 here, new, mother dying of Alzheimers...

[HopefullyNotDoomed]

So I am fairly terrible at these sorts of introductions. I am a 44 year old male who found out some months back that I am APOE 3/4. My mother is 76 and has been diagnosed with alzheimers. I am not exactly sure how far along it is but she has been in decline for the last few years. Some background on that; she was never a person who really took care of her health, she largely eschewed exercise, ate an average to mediocre diet and perhaps (seemingly) most relevant has been on prozac for some 25 years. Oddly enough, she has a monozygotic twin, who, as far as I am aware does not have alzheimers, although I am not entirely sure due to zero contact with my aunt. She never took a DNA test so I do not know if she is 3/4 or 4/4 but my father is 81 and mentally all there, in decent health, etc. So presumably if she is 4/4, I at least got the 3 copy from my father. I have read a number of articles wherein it was suggested that long term anti-depressant use is strongly linked to the development of alzheimers. It is fundamentally too late for my mother, given certain personality traits (stubbornness, lack of self-awareness, even prior to the disease, etc.) and habits and my father refuses to even tell her she has alzheimers, for which he believes he has good intentions, i.e. not panicking her and making it worse. She is currently taking Donepezil but that is about it and unfortunately it is just a matter of time as she was never the person to read up on things or implement life changes even in better health, let alone now.

So I am I trying to learn from her unfortunate example. I vacillate between moments of extreme despair where I actively think about checking myself into a euthanasia clinic (I live in Europe so that is always an option in theory) and moments where I think I might beat the odds but usually I just grimly accept what is a likely fate. Unfortunately I have a number of things not working in my favour. I have had chronic insomnia for some 25 years and in recent years it has become worse. It is a complicated phenomenon with me, which truth be told does not only involve problems with sleep induction and staying asleep; for some unknown reason and I have seen many doctors of varying specialties on account of this, I suffer from extreme nocturia at night and I will without fail get torn out of my sleep to void whereupon it becomes nigh impossible in most cases to fall asleep again. In general, I realise this is one of the worst prerequisites for avoiding alzheimers. I don't have the best living situation (terrible environment for sleep and many other things) but I am hoping to move to a better place assuming the Corona lockdown ever ends as we are not allowed to go over the borders at the moment in Europe. But in general I am fairly overwhelmed in terms of what I can otherwise do. I regularly walk for about an hour a day, sometimes more, intermittent fast and do my best to avoid stress. One thing about some of the nutritional recommendations is that they tend to be very cost prohibitive; wild caught salmon, grass fed meat, fish roe, etc. I am relatively poor so I cannot afford all that stuff and I do not even know where I would get all of that even if I could. I worry that my relative poverty will condemn me to alzheimers because I simply cannot afford the foods I am supposed to eat. Any recommendations here? I eat smoked salmon (the cheap brand), eat tinned mackerel for example.

Also having read this:

"How early in the disease process should preventive measures be initiated? As soon as possible. We already know that biochemical harbingers of Alzheimer’s are present 15 to 20 years before any of its currently recognized symptoms become apparent. No doubt the disease begins even sooner, especially for people who have the ApoE4 gene. In a brain-imaging study of young adults (aged 20–35), fMRI scans showed visible differences in the brains of those with ApoE4, compared with others. There was hyperactivity in their hippocampi. Even when these ApoE4 carriers weren’t doing anything, their hippocampi were working harder than in those without ApoE4.80"

I was thinking about seeing a neurologist but I have no idea what to ask for or how to go about it other than to explain my concerns and mention my mother as well as my APOE4 gene. I guess an fMRI scan looking for hyperactivity in my hippocampus? I am going to cut out grains and all processed food from my diet; I know that could help just not sure in general other than more exercise and the things I mentioned I could do.

I really appreciate the existence of this forum having discovered it the other day and will try to make good use of the resources here. So thank you for setting it up and looking forward to learning more.

[birdie18]

So I am fairly terrible at these sorts of introductions. I am a 44 year old male who found out some months back that I am APOE 3/4. My mother is 76 and has been diagnosed with alzheimers. I am not exactly sure how far along it is but she has been in decline for the last few years. Some background on that; she was never a person who really took care of her health

Dear HopefullyNotdoomed,
Your hope matters! Along with attention to all those healthy behaviors, hope will go far toward wellness of mind and body. You are not doomed. In fact, you have a good chance to carry on with full normalcy if you stay true to your vision. Your mother may have been compromised by her challenges but she stirred in you a commitment to do better.

You are aware of the things you want to change and you've been working toward those goals. That is amazing! You have the mindset; you are ready. That is huge! I hope you won't settle into an assumption of doomed fate because it is so not the case. Time is on your side. And we are here to help you reverse those ideas, any time! Write me!

Some details matter. Eating well doesn't have to be expensive but it does help to have a carefully planned shopping list and time to prepare fresh food. A focus on eating the foods that are better and avoiding the bad ones, (sweet, processed) is a good place to start and stay on track. (Wild salmon and occasional tinned mackerel are high on my list. Yum!) If that is daunting, there are lots of coaches and nutritionists who can give you tips. Online videos and group coaching sessions can be hugely helpful.

I commend you for working on your sleep! It will happen one day, when you least expect it. Good for you for trying. What have you learned about yourself from that? You are persistent and committed. That will take you far. Have you tried a routine practice of sitting or walking with intentional silence? Call it meditation or relaxation or mindfulness. It's the next best thing to sleep. It is one of the best things you can do for your brain. If you practice daily, it becomes habit. Over time, the mind becomes quiet and focus is easier. It could even help you sleep.

Have you looked at your evening food intake and evening stress levels as contributors to your waking in the night? Commonly these things can do just that. For many of us, it helps hugely to complete all eating 3 hours before sleep. The hour or two prior to getting in bed for sleep, is a time of quieting the mind, even while finishing up the stuff that needs to be done. Especially when life is overwhelming, this focus on relaxation before sleep, can be a lifesaver.

I regularly walk for about an hour a day, sometimes more, intermittent fast and do my best to avoid stress.

Fantastic! You are well on your way! Do you give yourself credit? Acknowledge that you are being very kind to yourself?

One thing about some of the nutritional recommendations is that they tend to be very cost prohibitive; wild caught salmon, grass fed meat, fish roe, etc. I am relatively poor so I cannot afford all that stuff and I do not even know where I would get all of that even if I could. I worry that my relative poverty will condemn me to alzheimers because I simply cannot afford the foods I am supposed to eat. Any recommendations here? I eat smoked salmon (the cheap brand), eat tinned mackerel for example.

I was thinking about seeing a neurologist but I have no idea what to ask for or how to go about it other than to explain my concerns and mention my mother as well as my APOE4 gene. I guess an fMRI scan looking for hyperactivity in my hippocampus?

You have posed many fine questions! A good starting place here can be found in the primer and then, the wiki. Hopefully, members will see and respond to this page. A tip on staying in the conversation is to use the quotes as described here. I hope this was helpful and I look forward to hearing from you. birdie18

[NF52]

So I am fairly terrible at these sorts of introductions. I am a 44 year old male who found out some months back that I am APOE 3/4. My mother is 76 and has been diagnosed with alzheimers. I am not exactly sure how far along it is but she has been in decline for the last few years....Oddly enough, she has a monozygotic twin, who, as far as I am aware does not have alzheimers, although I am not entirely sure due to zero contact with my aunt. She never took a DNA test so I do not know if she is 3/4 or 4/4 but my father is 81 and mentally all there, in decent health, etc.... my father refuses to even tell her she has alzheimers, for which he believes he has good intentions, i.e. not panicking her and making it worse. She is currently taking Donepezil but that is about it and unfortunately it is just a matter of time as she was never the person to read up on things or implement life changes even in better health, let alone now.

So I am I trying to learn from her unfortunate example. I vacillate between moments of extreme despair where I actively think about checking myself into a euthanasia clinic (I live in Europe so that is always an option in theory) and moments where I think I might beat the odds but usually I just grimly accept what is a likely fate....

I really appreciate the existence of this forum having discovered it the other day and will try to make good use of the resources here. So thank you for setting it up and looking forward to learning more.

Welcome my "hopeful" genetic cousin!

Whether you have always lived in Europe or live there now by choice or for work or both, you are not doomed! And since I am a little bit younger than your mother (soon-to-be 69) and ApoE 4/4, here's what I can tell you, from several years of meeting directly with Alzheimer's researchers as both a "consumer" grant reviewer and a member of the Alzheimer's Clinical Trial Consortium Participant Advisory Board though UC-San Diego:

1) Alzheimer's is a term that is commonly given to anyone with symptoms of memory, language, motor or behavioral impairments after age 65. [Young-Onset Alzheimer's is a term given to people with similar symptoms who are diagnosed in their 50's or early 60's; it's not clear if they have additional genetic or environmental risk factors). It is considered a "multi-factorial disease", since researchers have found that many things seem to be needed for Alzheimer's disease (AD) to happen--it's not simply a matter of one or two ApoE 4 genes. The only reason to do an fMRI at age 44 is for clinical study of possible early changes--trust me that this is not proof of any way to "diagnose" risk at your age! I've had several MRIs and they were all normal at ages 65-67, even with ApoE 4/4. Doesn't mean I can draw well, or play the piano or speak 5 languages--can't do any of those things! But I and many of our members with ApOE4 in their 60's, 70's and 80's test as well within the normal range. We don't feel doomed--and don't want you to either!

2) Alzheimer's is also a "spectrum" disease, in that some people may have more difficulty with memory for recent events, others in word-finding, others may become quite passive without some prompt for an activity that they enjoy (singing, dancing to chair yoga, looking at family pictures). While from your perspective your mother didn't implement needed changes, she has taken medication to deal with depression for 25 years--which about 50% of people with serious mood disorders choose not to do, often denying the effects on their daily lives. If you try to think of her as "living with Alzheimer's", rather than "dying from Alzheimer's", you may notice small ways in which she and you can still interact. I have friends whose adult children often went for walks with them, or shared a chocolate chip cookie with them, or listened to music from the 1960's that they loved as teenagers. As one person said "My mother may not have words, but she still has her feelings and those are what we focus on."

3. Depending on where in Europe you live, there may be day programs that your father could sign her up to attend after COVID in under control, or she has a vaccination, with transportation provided by the government. These would give her some structure in her day and your father a break.

4. As for her being an identical twin, I too am the daughter of an identical twin, who died 8 years before his brother. My dad had cardiac arrest at age 67; I and my 3 siblings have no sign of heart disease. His brother died of colon cancer at age 74; which is something that can be monitored for much more easily now. Neither of those means I am doomed, any more than my grandmother's death from a stroke at age 45 doomed her 11 children. All but one lived into their 70's--most into their 80's and one died happily in his sleep at age 97 with all his faculties intact!

5. With ApOE 3/4, which is what my 3 children also have, you would have a 20-25% chance of a diagnosis of mild cognitive impairment or dementia by the age of 85--if you were my age! Here's a 2017 report that found that we continue to learn the importance of all the strategies recommended in the Primer:

The risk declined progressively with cumulative exposure to reserve-enhancing latent factors, and having high scores on cognitive reserve-enhancing composite factors in all three periods over the life course was associated with the lowest risk of dementia (RR 0.40; 95% CI 0.20–0.81). Similar associations were detected among APOE ε4 allele carriers and noncarriers.

Association of lifelong exposure to cognitive reserve-enhancing factors with dementia risk: A community-based cohort study

Here's what I do know from my experience with my mother: It's incredibly and continually sad, difficult, and frustrating to have a parent change from the person you've known all your life. It's also a rare opportunity to reach out her her and your dad with an open-ended "how can I help you both on this path?" Your dad is making what he feels in the best decision to not tell you mom of her diagnosis. It's possible she wouldn't remember the term, and lives in the present, with little day-to-day sense of what she has forgotten.

For yourself, you may have inherited that tendency to search the environment for danger--if so, cognitive behavioral therapy can be an enormous help--and the best part is that as an ApoE 3/4 you have great verbal skills to use that technique.

Please know that we're here for you and believe that you can be hopeful about both your own future and your new relationship with your mom. Hugs from across the pond.

[SusanJ]

for some unknown reason and I have seen many doctors of varying specialties on account of this, I suffer from extreme nocturia at night and I will without fail get torn out of my sleep to void whereupon it becomes nigh impossible in most cases to fall asleep again.

Welcome, and do know, that many of us, who found out we carry E4 and have had parents with dementia, have struggled with what seemed like a death sentence. I hope you find information and support here that help you come to a different place with your E4 knowledge. It does get better with time as you realize there is a lot you can do to avoid the same fate as your mom.

Having struggled with nocturia in recent years, I found that lowering oxalates in my diet has eliminated my need to get up in the middle of the night. And like you, I would often lie awake for a while after getting up, and sometimes not fall back asleep. Lowering oxalates was a game changer for me and it might be something to look into if your doctors have not found other causes. I just finished a post on oxalates on the wiki that contains more info.

Do come back with questions and let us know how it's going.

[HopefullyNotDoomed]

Thank you all for the informative and supportive responses. I fully plan to take advantage of the information here and implement it accordingly. With luck despair won't consume me. Thanks again!

P.S. I will check out the info about oxalates.

[Fiver]

So sorry to hear about your mom. My mom passed away about a year ago from Alzheimer's. It's tough.

However, as a 3/4 in your 40s you aren't doomed. There are things you can do to reduce the risk. And there are medical advances in the pipeline that are almost certain to allow us to reduce our risks further in the years to come. While I have had bouts of anxiety about this myself I try to keep in mind the advice of the stoics: those who worry too soon, worry too much. Just harness some of that anxious energy to improve your lifestyle, which will pay off in many ways. And if you want to do more maybe find ways to contribute to medical research, perhaps through participating in a clinical trial or raising funds.

[Tincup]

One thing about some of the nutritional recommendations is that they tend to be very cost prohibitive; wild caught salmon, grass fed meat, fish roe, etc.

My doc, Steven Gundry, always says, "do the best with what you have." I've listened to Dr. Eric Westman MD, who runs a clinic at Duke University. He has good results getting people to improve their glycemia and health and he coaches some how to eat off the menus at the fast food places, because that is where they eat.

From my perspective, I'd try to prioritize real rather than processed and ultra-processed food (including industrial seed oils) and trying to optimize glycemic control. Time restricted feeding/intermittent fasting are great tools! In one study of hispanic women breast cancer survivors, women who fasted 13 hours/day and the fast started before 8 PM had a 38% lower chance of cancer recurrence. My supposition this intervention has a far wider impact than just the cancer.

[Tincup]

Another thought. Exercise can be hugely important. Several thoughts here.

In this post, Stavia (a 4/4) recounts how she recovered from a very serious TBI with exercise.

In this podcast Zone 2 exercise is discussed. Qualitatively, Dr. Phil Maffetone's MAF approach gets your body to the same place without lactate testing. This podcast discusses the approach. You can do this by taking your pulse with your finger with a watch with a second hand or a cell phone timer. The approach is described in detail here.

The following document is a different approach, describes short duration, varying intensity, workouts from Martin Gibala's excellent book, the One Minute Workout.

One Minute Workout.pdf

These two ideas are complementary, on different days. Both can be done with little expense.

[SoCalGuy]

I used to eat a lot of sardines, which are cheaper than wild caught salmon and are hopefully available in your area. They boosted my Omega index to 7.1 and my DHA levels to 5.6. From what I understand having a DHA level of 4.4 is considered healthy and there's not much benefit to being much higher than that level.

Have you tried meditation? There are likely to be some free versions of apps to at least get you started.

[TWBD]

I'm a 3/4 and lost a father to AD and sympathize with being overwhelmed with the prospects that I'm going down that road as well. From my personal experience and my husband's (also 3/4), neurologists are a waste of time and money as they do not have solutions other than meds and don't treat us who are early on the road. You will get a "Come back when you have more symptoms." Most of them don't refer you to getting an AD spect scan which, at the very least, is helpful towards getting a baseline on your brain. These type scans usually are not covered by most insurances anyway. What we do is try to stay within the 3 or 4 hour fasting window, don't eat at least 3 hours before bedtime and get a lot of fresh veggies, EVOO, pastured eggs (our brunch is mainly that) and a small evening meal. Choline deficiency is a problem with us 4's so one step I take is to try getting enough in my diet (eggs) and supplement with Alpha-GPC. That one step made a decent difference to my cognition and energy.
You're going in the right direction. Baby steps. There is hope for you with improving your sleep and many resources and ideas on this site and the internet. Gaba and 5-HTTPS as well as melatonin were game changers for us.

"Choline - Health Professional Fact Sheet" https://ods.od.nih.gov/factsheets/Choli ... %20choline.