New! 37F apoe3/4 in NYC, Mom (71, apoe3/4) is Pending Alzheimer's Dx
Posted: Fri Sep 25, 2020 2:54 pm
Hi Everyone! I found this group thanks to Dale Bredesen's book and I'm so relieved to be in good (albeit genetically unlucky) company. Please bear with me, as this is a bit of a novel, but recent events have left me overwhelmed and I just need to get it out somewhere.
TL/DR: My mom is just beginning to slip into AD, meanwhile I'm trying balance the stress of her care while working to avoid the same fate.
Three years ago, my mom and I took a 23&Me test and learned we were both heterozygous for APOE4. I was filled with grief/worry because I'd recently begun to notice the early indications of MCI in my mom (a brilliant former English teacher-cum-engineer), forgetting chunks of some common, multisyllabic words and an odd habit of consistently reversing pronouns ("he" became "she," when flustered, she'd say: "You're my mother! Don't tell me what to do!" instead of "You're my daughter! Don't tell me what to do!").
But mom went into flat denial, declaring we'd never had anyone in the family with the disease (I reminded her of the stories of her paternal grandmother forgetting who grandpa was before she died. Mom denied it was a sign of AD) and, more exceptionally, claiming she KNEW for a fact that SHE would never get AD and becoming furious whenever I would ask, even as a figure of speech: "hey mom, remember when...."
At the time, my partner, a geneticist at NYU Langone, urged me to not read much into it because mom was otherwise healthy -- very high HDL (72), thin and fit, great blood pressure and heart health. He also reassured me that, because of the advances in AD research, and my relative distance from menopause I would likely avoid AD. So, things were calm for the next few years all the way through when we saw mom for Christmas 2019 (she lives in Georgia, we're in NYC) and found her much the same as she'd been over the course of the three years prior.
Fast forward to spring 2020. I'd planned to visit her for her 71st birthday in March, but couldn't due to the pandemic. Over the coming months, her texts became increasingly disjointed and she seemed to forget more words during our calls. She claimed to have lost access to her email and the internet. She expressed increasing confusion when driving, calling me from the road to ask for step-by-step directions on routes she'd known at Christmas. Feeling alarmed, we rushed to Georgia for Labor Day week.
While I was relieved to see the house as neat and orderly as always and her two cats well cared for, it was clear that she'd tipped beyond MCI. Mom has lost the ability to fluidly speak for more than a few sentences or fully recall words with more than three syllables. She also forgets or flubs common, simple words like "pill," "waterfall," "Tylenol," etc. while using odd replacements: "the lane dies (instead of runs out)" and "my tire is dead (instead of flat)," even forgetting recent events like getting her cats spayed in February. And the denial? Worse than ever. I'm now in the process of getting her into a gerontologist under the auspices of treating her osteoporosis (which is indeed part of it) so I can get her diagnosed and hopefully get some legal and lifestyle plans in place so we can both have a better quality of life through this journey.
When it comes to mom, I'm deathly afraid for her quality of life and in deep doubt about her willingness to accept any of the ReCODE protocol (she's violently opposed to all pills/vitamins, claims an allergy to all fish and fat, refuses exercise by saying it's too painful, and is a frail 108 lbs, down from a healthy 128). She also has a lifelong fatalistic attitude and has socially isolated herself over the years from everyone but me and my aunt (who lives next door to her) due to untreated Borderline Personality Disorder.
But for myself? I'm hopeful. Although bloodwork at age 32 (before I knew my APOE4 status) revealed scary low HDL (25) and slightly elevated AC1 (fasting glucose was 78), seeing my mom kicked my ass. I was already doing some of the things outlined in the ReCODE protocol, but I'm adding more pieces every day.
I would love to hear from other who share some of my strengths and struggles and see how things are working out for them:
THE GOOD:
* I'm 37, 5'5" and 152 lbs -- so not a ton to lose before my goal weight of 130
* Just 1 copy of APOE4
* Don't like alcohol
* Never smoked (though I do smoke weed 1x/week since age 30)
* Daily 14-22 hour fasts (with occasional 4-day water fasts) since 2017 because they just feel good
* Blood pressure avg. 100/58
* I LOVE cruciferous veggies, fermented foods, and berries and cook often
* 1g Omega 3 daily in phospholipid form
* 450mg of daily choline
* 10g daily HP Inulin w/butryic acid
* daily B-complex
* daily NR+ Pterostilbene
* Great dental health
* 35 min/day cardio-boosting DDP Yoga since May
* Light 2x/week weight training until I can get back into the gym, as I enjoy lifting heavy
* Walk 12-25 miles/week
* Intellectually intense job (Communications director working in political organizing)
* When not in a pandemic, I'm very socially active
THE BAD:
* One copy of APOE4
* An INSANE sugar addiction. When eating freely/not trying to eat well, I can consume as much as 40-100g/day in the form of ice cream, candy bars, and bubble tea (though I generally don't eat meals w/added sugar and never drink soda). I did perfect keto for 8 weeks back in 2016 and finally broke when a man opened a Snickers on the train and I got the shakes and started sweating. The 4-day fasts reset my baseline, however, and enable me to cut the bulk of my sugar consumption over the next few months.
* I struggle with reaching deep sleep (sleep apps often show that I never get past REM). Despite good sleep hygiene, I'm a VERY light sleeper and move a great deal in my sleep. I also struggle with allergies that worsen at night and interfere with my breathing, often leaving me very foggy in the mornings. Any help with this? It seems APOE4 is associated with impaired sleep.
* I love lean red meat (I have a visceral aversion to the texture of fat) and pork, but this still seems to be a no-no
* I hate the taste of fish with a burning passion, though I'm trying to cultivate a palate for salmon at least
* Stress. As an only child to a divorced mom who is extremely resistant to care, living in Georgia, and who is slipping in AD, I feel deep and constant anguish. This also comes on the heels of numerous protracted deaths and illnesses of loved ones, including those in which I was the primary caretaker for 5+ years until their deaths.
TL/DR: My mom is just beginning to slip into AD, meanwhile I'm trying balance the stress of her care while working to avoid the same fate.
Three years ago, my mom and I took a 23&Me test and learned we were both heterozygous for APOE4. I was filled with grief/worry because I'd recently begun to notice the early indications of MCI in my mom (a brilliant former English teacher-cum-engineer), forgetting chunks of some common, multisyllabic words and an odd habit of consistently reversing pronouns ("he" became "she," when flustered, she'd say: "You're my mother! Don't tell me what to do!" instead of "You're my daughter! Don't tell me what to do!").
But mom went into flat denial, declaring we'd never had anyone in the family with the disease (I reminded her of the stories of her paternal grandmother forgetting who grandpa was before she died. Mom denied it was a sign of AD) and, more exceptionally, claiming she KNEW for a fact that SHE would never get AD and becoming furious whenever I would ask, even as a figure of speech: "hey mom, remember when...."
At the time, my partner, a geneticist at NYU Langone, urged me to not read much into it because mom was otherwise healthy -- very high HDL (72), thin and fit, great blood pressure and heart health. He also reassured me that, because of the advances in AD research, and my relative distance from menopause I would likely avoid AD. So, things were calm for the next few years all the way through when we saw mom for Christmas 2019 (she lives in Georgia, we're in NYC) and found her much the same as she'd been over the course of the three years prior.
Fast forward to spring 2020. I'd planned to visit her for her 71st birthday in March, but couldn't due to the pandemic. Over the coming months, her texts became increasingly disjointed and she seemed to forget more words during our calls. She claimed to have lost access to her email and the internet. She expressed increasing confusion when driving, calling me from the road to ask for step-by-step directions on routes she'd known at Christmas. Feeling alarmed, we rushed to Georgia for Labor Day week.
While I was relieved to see the house as neat and orderly as always and her two cats well cared for, it was clear that she'd tipped beyond MCI. Mom has lost the ability to fluidly speak for more than a few sentences or fully recall words with more than three syllables. She also forgets or flubs common, simple words like "pill," "waterfall," "Tylenol," etc. while using odd replacements: "the lane dies (instead of runs out)" and "my tire is dead (instead of flat)," even forgetting recent events like getting her cats spayed in February. And the denial? Worse than ever. I'm now in the process of getting her into a gerontologist under the auspices of treating her osteoporosis (which is indeed part of it) so I can get her diagnosed and hopefully get some legal and lifestyle plans in place so we can both have a better quality of life through this journey.
When it comes to mom, I'm deathly afraid for her quality of life and in deep doubt about her willingness to accept any of the ReCODE protocol (she's violently opposed to all pills/vitamins, claims an allergy to all fish and fat, refuses exercise by saying it's too painful, and is a frail 108 lbs, down from a healthy 128). She also has a lifelong fatalistic attitude and has socially isolated herself over the years from everyone but me and my aunt (who lives next door to her) due to untreated Borderline Personality Disorder.
But for myself? I'm hopeful. Although bloodwork at age 32 (before I knew my APOE4 status) revealed scary low HDL (25) and slightly elevated AC1 (fasting glucose was 78), seeing my mom kicked my ass. I was already doing some of the things outlined in the ReCODE protocol, but I'm adding more pieces every day.
I would love to hear from other who share some of my strengths and struggles and see how things are working out for them:
THE GOOD:
* I'm 37, 5'5" and 152 lbs -- so not a ton to lose before my goal weight of 130
* Just 1 copy of APOE4
* Don't like alcohol
* Never smoked (though I do smoke weed 1x/week since age 30)
* Daily 14-22 hour fasts (with occasional 4-day water fasts) since 2017 because they just feel good
* Blood pressure avg. 100/58
* I LOVE cruciferous veggies, fermented foods, and berries and cook often
* 1g Omega 3 daily in phospholipid form
* 450mg of daily choline
* 10g daily HP Inulin w/butryic acid
* daily B-complex
* daily NR+ Pterostilbene
* Great dental health
* 35 min/day cardio-boosting DDP Yoga since May
* Light 2x/week weight training until I can get back into the gym, as I enjoy lifting heavy
* Walk 12-25 miles/week
* Intellectually intense job (Communications director working in political organizing)
* When not in a pandemic, I'm very socially active
THE BAD:
* One copy of APOE4
* An INSANE sugar addiction. When eating freely/not trying to eat well, I can consume as much as 40-100g/day in the form of ice cream, candy bars, and bubble tea (though I generally don't eat meals w/added sugar and never drink soda). I did perfect keto for 8 weeks back in 2016 and finally broke when a man opened a Snickers on the train and I got the shakes and started sweating. The 4-day fasts reset my baseline, however, and enable me to cut the bulk of my sugar consumption over the next few months.
* I struggle with reaching deep sleep (sleep apps often show that I never get past REM). Despite good sleep hygiene, I'm a VERY light sleeper and move a great deal in my sleep. I also struggle with allergies that worsen at night and interfere with my breathing, often leaving me very foggy in the mornings. Any help with this? It seems APOE4 is associated with impaired sleep.
* I love lean red meat (I have a visceral aversion to the texture of fat) and pork, but this still seems to be a no-no
* I hate the taste of fish with a burning passion, though I'm trying to cultivate a palate for salmon at least
* Stress. As an only child to a divorced mom who is extremely resistant to care, living in Georgia, and who is slipping in AD, I feel deep and constant anguish. This also comes on the heels of numerous protracted deaths and illnesses of loved ones, including those in which I was the primary caretaker for 5+ years until their deaths.