Overwhelming anxiety

[AllTheFeels]

Hi-
I’m new here and just found out a few days ago I’m e4/e4. I knew there was a risk of Alzheimer’s as my dad passed away at a young age (68) from covid; however, he was also very advanced with his dementia. He was never officially diagnosed with Alzheimer’s as far as I know, but his wife was also not very forthcoming with information.

Looking at his life—he was incredibly unhealthy. He was an alcoholic, smoked most of his life, ate poorly, had uncontrolled diabetes, and was obese.

I’m only 34 and just had my third child. I have so much fear about forgetting my children—the way my dad forgot me and I am feeling so overwhelmed. I truly feel like this is a death sentence, but I am working towards reframing my mindset. I’m still in shock about it all. I am terrified of being diagnosed early like my father and not being able to live out my life as I had envisioned. My oldest daughter has a severe genetic syndrome and I worry about her and her care. I also feel so guilty that I passed these genes onto my kids, even though I didn’t do it knowingly.

Just overall feel really down and hopeless. I was just starting nursing school and now feel like what’s the point? Why not just focus on my family? Sorry to be so down.

[abalboa]

Hi-
I’m new here and just found out a few days ago I’m e4/e4. I knew there was a risk of Alzheimer’s as my dad passed away at a young age (68) from covid; however, he was also very advanced with his dementia. He was never officially diagnosed with Alzheimer’s as far as I know, but his wife was also not very forthcoming with information.

Looking at his life—he was incredibly unhealthy. He was an alcoholic, smoked most of his life, ate poorly, had uncontrolled diabetes, and was obese.

I’m only 34 and just had my third child. I have so much fear about forgetting my children—the way my dad forgot me and I am feeling so overwhelmed. I truly feel like this is a death sentence, but I am working towards reframing my mindset. I’m still in shock about it all. I am terrified of being diagnosed early like my father and not being able to live out my life as I had envisioned. My oldest daughter has a severe genetic syndrome and I worry about her and her care. I also feel so guilty that I passed these genes onto my kids, even though I didn’t do it knowingly.

Just overall feel really down and hopeless. I was just starting nursing school and now feel like what’s the point? Why not just focus on my family? Sorry to be so down.

Welcome AllTheFeels,
Thank you for joining our site and sharing in the forum. I admire your bravery in sharing your story and how you are feeling. It is so normal to have all those feelings and the sense of overwhelm when first given this information. But please be assured that being 4/4 is not a sentence to develop Alzheimer's and we have many members who are also 4/4 in their 50, 60 and 70s that are still just fine! There is also so much awareness now on the choices we can make with diet and lifestyle that can greatly decrease the risk of developing AD even if you carry the allelle. You will likely have many,many years to enjoy your children and career in good cognitive health!

As a Support Team Intern, I can also share several tools & resources to help you get the most out of your experience if you would like to explore the site in more detail. The Primer is a detailed and informative resource written by a practicing M.D. with ApoE4/4. It includes information about the biochemistry of the ApoE4 gene and offers a variety of research-based prevention strategies.

Some helpful tips to navigate the site include the How-To Guide. It includes topics such as navigating the forum, private messaging, and searching. One great tip is using the quote (") button when replying to a post. Using the button will automatically alert the member of your response.

If you are interested in learning more about other members check out Our Stories.

Again, I am so glad you joined our forum. I look forward to seeing you here on the site and enjoying the support of this wonderful community. Please feel free to reach out anytime.

Warmly,
Angie

[NF52]

Hi-
I’m new here and just found out a few days ago I’m e4/e4. I knew there was a risk of Alzheimer’s as my dad passed away at a young age (68) from covid; however, he was also very advanced with his dementia. He was never officially diagnosed with Alzheimer’s as far as I know, but his wife was also not very forthcoming with information.

Looking at his life—he was incredibly unhealthy. He was an alcoholic, smoked most of his life, ate poorly, had uncontrolled diabetes, and was obese.

I’m only 34 and just had my third child. I have so much fear about forgetting my children—the way my dad forgot me and I am feeling so overwhelmed. I truly feel like this is a death sentence, but I am working towards reframing my mindset. I’m still in shock about it all. I am terrified of being diagnosed early like my father and not being able to live out my life as I had envisioned. My oldest daughter has a severe genetic syndrome and I worry about her and her care. I also feel so guilty that I passed these genes onto my kids, even though I didn’t do it knowingly.

Just overall feel really down and hopeless. I was just starting nursing school and now feel like what’s the point? Why not just focus on my family? Sorry to be so down.

Please accept a virtual hug from someone is also ApoE 4/4, who also has 3 kids, one who was born with life-threatening congenital anomalies (not genetic, but requiring 6 operations in 5 years) and who now has three healthy adult children (all ApoE 3/4), all college graduates working in demanding occupations, two adorable grandchildren, a husband of almost 43 years who knows I love challenges and talk too much.
I am 71 and have a resting heart rate of 57, normal blood pressure, no coronary artery disease (my dad died of that at 67) good values on glucose and inflammation markers, and test well within the normal range of cognition every 6 months in a clinical trial for people like me.

I too was shell-shocked and cried, and thought what's the point--and I was 62. And then I thought--wait, I just finished my third master's degree (like you, I loved learning and helping others) and have people I love, places I want to visit, books I want to read, rooms I want to paint, etc.

This feeling of an abyss fades, I promise. You have decades to watch the galloping pace of research pay off and You also can plan for a mid-life without the mistakes I made (15 hour work days, too little exercise and sleep, not taking care of myself as well as others.) You are re-writing your family's story. I know it will be a great one!

Nancy
,

[AllTheFeels]

Truly thank you so much for the hope and kindness. I’ve felt every emotion and keep ending up on grief. I noticed my dad had some mental decline but attributed it to his lifestyle and the fact that he retired early and stayed at home a lot. I’ve always been healthy, not as much recently as I’d like, but grew up playing all types of sports. I’m afraid to see what my future holds and honestly just am still in despair over the news. Anytime I forget a word or stumble on mine now I feel like I am declining even though that is a normal thing for people to do.

Again I truly truly appreciate the kindness and hope this season of emotions passes so I can get back to enjoying my life without crying or breaking down so much.

[NF52]

Truly thank you so much for the hope and kindness. I’ve felt every emotion and keep ending up on grief. I noticed my dad had some mental decline but attributed it to his lifestyle and the fact that he retired early and stayed at home a lot. I’ve always been healthy, not as much recently as I’d like, but grew up playing all types of sports. I’m afraid to see what my future holds and honestly just am still in despair over the news. Anytime I forget a word or stumble on mine now I feel like I am declining even though that is a normal thing for people to do.

Again I truly truly appreciate the kindness and hope this season of emotions passes so I can get back to enjoying my life without crying or breaking down so much.

You have so many strengths that your dad sadly lacked: Your level of education, your growing family, your strong athletic ability and skills, and your ability to live with your feelings, not bury or hide them.

Your dad may have been dealing with lots of issues he felt were beyond his control. All of them are within the lists of known risk for dementia NOT caused by ApoE4, but by inflammation and blood vessel damage. In 2022, the AMA journal posted an analysis that:

Among all US adults, an estimated 41.0% ... of dementia cases were attributable to 12 risk factors...low education [less than H.S. diploma], hearing loss, traumatic brain injury, hypertension, excessive alcohol consumption, obesity, smoking, depression, social isolation, physical inactivity, diabetes, and air pollution ... The greatest attributable fraction of dementia cases was observed for hypertension... obesity,... and physical inactivity...

Variation in Population Attributable Fraction of Dementia Associated With Potentially Modifiable Risk Factors by Race and Ethnicity in the US

Several recent studies have shown that the biggest effect on cognitive resilience in ApoE4 seems to be from exercise, not marathons, just any kind of exercise you like and can do at least a few times a week. This is from a 2022 meta-analysis of the last 20 years of research:

All included studies were written and published in English between 2000 and 2020. From these studies, we conclude that exercise is a non-pharmacological treatment option for high-risk APOE ε4 carriers to ameliorate the AD pathological processes including reducing Aβ load, protecting against hippocampal atrophy, improving cognitive function, stabilizing cholesterol levels and lowering pro-inflammatory signals.

Exercise as Potential Therapeutic Target to Modulate Alzheimer’s Disease Pathology in APOE ε4 Carriers:
Nancy

And please know that stumbling on a word is never a sign of cognitive issues--not even on the tests I take! I worked for years with experts in speech pathology and brain injury, who said slips of the tongue are merely our brain networks competing with each other to offer up options. It's when people have trouble with new learning that most errors are seen in later life.

[AllTheFeels]

Thank you so much Nancy! I have OCD truly struggling with keeping it under control with this news. This is truly my biggest fear in life after watching my dad decline. His uncles also had Alzheimer’s so I feel like I’m at a much higher risk but I also know that they did not live healthy lives. I am trying to incorporate more exercise back into my life. It’s hard with 3 under 4. Trying to live the words my therapist said probability does not mean possibility.

[TheresaB]

Trying to live the words my therapist said probability does not mean possibility.

There's an expression we use to say around here (don't know why it faded away): Genetics is not destiny.

Another expression I've heard recently: Genes load the gun, lifestyle pulls the trigger.

Much has been learned about our allele and Alzheimer’s in recent years. I am eternally grateful that I live in an era where we know much about this allele. Unfortunately it was too late for your dad (I'm so sorry you had to go through that, I know how terribly hard Alzheimer's is on the loved ones.) Granted there’s still much that needs to be known, but in the Dr Peter Attia interview with Dr Kellyanne Niotis (a neurologist specializing in risk reduction strategies for the prevention or slowing of neurodegenerative disorders) https://peterattiamd.com/kellyannniotis/ she said something to the effect of that at least with an ApoE4 carrier they know where to start, they’re more at a loss with noncarriers.

Telling you not to feel anxious won't do any good, but maybe understanding the situation will lead to less anxiety. Also knowing you're not alone can be reassuring. There are 4/4s who live a long, healthful, cognitively intact life. I'm a 4/4, with a strong family history of dementia and cardiovascular disease. I can tell you I’m optimistic about my situation! I’m not blind to my genetic issues, quite the contrary, I’ve faced my fear with research. I know where issues lie and I’ve used that knowledge to take action to mitigate those risks: diet, exercise, sleep, and stress reduction. That makes me feel empowered and in control of my own health. I don’t feel inevitably doomed. I hope you feel that way someday. You are so lucky to learn and begin interventions at your young age (I didn't know until my mid 50s). At your young age, you have more "wiggle room" to the obstacles that your young family presents. But work with intention every day because postponing entirely will mean you will only have to be stricter with compliance later in life

You are not the first person to write freaked out about your 4/4 status. The following is some cut and paste from what I’ve written to others:

*The ApoEε4 allele is not deterministic, it does not mean you will get Alzheimer's. It is a strong risk factor for sporadic Alzheimer’s (also known as Late Onset Alzheimer’s Disease [LOAD]), but it's not deterministic. ANYONE can get Alzheimer's and there are 4/4s who are cognitively intact until the day they die of old age.

*4’s are just at greater risk, a risk that is GREATLY influenced by lifestyle factors. How genes are expressed depend heavily on lifestyle influencers. Genes are only the hardware, it's diet/lifestyle that is the software and determines what the hardware does.

*Dr Dale Bredesen (see see our wiki https://wiki.apoe4.info/wiki/Bredesen_Protocol) has said Alzheimer’s should be a rare disease. He means that for all everyone, not once has he said it should be a rare disease except for ApoE4 carriers.

*According to Genome-Wide Association Study of Brain Connectivity Changes for Alzheimer’s Disease from Jan 2020, the effects of ApoE4 accounts for only 27.3% of the overall disease heritability.

*I hate it when people refer to ApoE4 as "the Alzheimer's gene" that is such a misnomer. It's a "you better be careful with lifestyle choices for healthy aging" gene because it’s more an antagonistic pleiotropy gene, which is to say it’s effect is beneficial early in life, but is more of a disadvantage later in life.

*ApoE4 isn’t the number one risk factor for Alzheimer’s, aging is, and that’s a freeing thought because while we can’t control the genes we inherit, we can all control how we age! We can influence how our genes are expressed (epigenetics).

Need more of a boost? Want to know what to do? Read this, written by another fellow 4/4, and founder/president of ApoE4.info who about 10 years ago was told by a doctor that nothing can be done about cognitive decline and to get her affairs in order: ApoE4 Can be Your Friend

[TheresaB]

I am trying to incorporate more exercise back into my life.

I also meant to mention about exercise. Yes, the thought is daunting and there always seem to be higher priorities. But benefit can be gained from even small strides. Just a walk in the park while your kids play can be beneficial and therapeutic with the fresh air and sunshine. Or maybe a couple 4 minute Nitric Oxide Dumps a day would be a great place to start. Our ApoE4.info wiki might have some good ideas for you besides going to the gym to sweat every day: Exercise - Types, Lengths, and Benefits

[SusanJ]

I have OCD truly struggling with keeping it under control with this news.

I'm guessing that pretty much everyone on this forum struggled mightily with the initial news, and over time, the emotions settle because we realize just how much we can do to minimize the risk. Feeling you can do something positive to help your health might help. As someone who is mildly OCD (just have to take a look at my color sorted closet for a clue ), perhaps you can use OCD to your advantage to help you stay on track with eating a healthy diet and exercise instead of letting it take over your life with worry.

The other thing I highly recommend is checking your vitamin B status with labs, particularly folate, B12, niacin and B6. They are not only important for good brain health, but I have also found my OCD tendencies have mellowed over time, which I attribute (at least partially) to supplementing these vitamins to address some genetic variants I have. (For a quick overview, here is a short article on vitamins and OCD. https://www.livestrong.com/article/3069 ... s-for-ocd/)

Sending hugs and wishes for you to have better days very soon.

[AllTheFeels]

Thank you so much! I’m trying not to let ocd control every aspect of this because I know it can. Right now I’m struggling to even eat because I’m terrified that what I eat will increase my risk. I’m just in a really bad place mentally and hope I can get out of this pit soon