New here, devastated 4/4, family history of AD

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
apoe4homozyg
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New here, devastated 4/4, family history of AD

Postby apoe4homozyg » Wed Jul 10, 2019 1:42 pm

Hello everyone,
Well today I got the news that I have two copies of E4. I'm devastated and alone. I wasn't prepared. My father has AD and it's my worst nightmare. I'm 41. I have started Dr. Bredesen's book the End of Alzheimer's. That's what led to me getting tested. I figured it's better to know what I'm working with, right? I still think that's true, but I don't know what to do with this information right now. I'm in NYC and I don't have a doctor who will be willing to order all the additional tests. I've tried to make appointments with Alzheimer's experts, but they tell me I'm too young to be seen. I'm worried to tell my lovely fiance. I know he'll be supportive, but perhaps knowing that I may not have as much time as he thought will weigh on him as it's weighing on me. I need to snap out of this and get hopeful. Right now I just feel doomed. And of course I'm looking back on everything I've done over the past ten years that has been wrong: high stress, no sleep, lots of alcohol, lots of processed food, dental problems (including one root canal), low vitamin D. Plus I'm a woman and I read the symptoms start earlier for us. Does anyone know of a doctor in NYC who is helpful? Preferably one that takes insurance? I *really* appreciate this group. The internet is full of information and most of it is extremely scary. Thanks in advance.
41 yo premenopausal female 4/4 with strong family history

BGTex
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Re: New here, devastated 4/4, family history of AD

Postby BGTex » Wed Jul 10, 2019 3:34 pm

apoe4homozyg wrote:Hello everyone,
Well today I got the news that I have two copies of E4. I'm devastated and alone. I wasn't prepared. My father has AD and it's my worst nightmare. I'm 41. I have started Dr. Bredesen's book the End of Alzheimer's. That's what led to me getting tested. I figured it's better to know what I'm working with, right? I still think that's true, but I don't know what to do with this information right now. I'm in NYC and I don't have a doctor who will be willing to order all the additional tests. I've tried to make appointments with Alzheimer's experts, but they tell me I'm too young to be seen. I'm worried to tell my lovely fiance. I know he'll be supportive, but perhaps knowing that I may not have as much time as he thought will weigh on him as it's weighing on me. I need to snap out of this and get hopeful. Right now I just feel doomed. And of course I'm looking back on everything I've done over the past ten years that has been wrong: high stress, no sleep, lots of alcohol, lots of processed food, dental problems (including one root canal), low vitamin D. Plus I'm a woman and I read the symptoms start earlier for us. Does anyone know of a doctor in NYC who is helpful? Preferably one that takes insurance? I *really* appreciate this group. The internet is full of information and most of it is extremely scary. Thanks in advance.

I am very new here, but I can tell you that you have come to the right place. There actually is great reason for hope these days. You are not doomed.

Let these guys help you and you’re gonna come to absolutely know that your destiny is not what you’re fearing it is.

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Re: New here, devastated 4/4, family history of AD

Postby DebS » Wed Jul 10, 2019 3:58 pm

apoe4homozyg wrote:Hello everyone,
Well today I got the news that I have two copies of E4. I'm devastated and alone. I wasn't prepared. My father has AD and it's my worst nightmare. I'm 41. I have started Dr. Bredesen's book the End of Alzheimer's. That's what led to me getting tested. I figured it's better to know what I'm working with, right? I still think that's true, but I don't know what to do with this information right now. I'm in NYC and I don't have a doctor who will be willing to order all the additional tests. I've tried to make appointments with Alzheimer's experts, but they tell me I'm too young to be seen. I'm worried to tell my lovely fiance. I know he'll be supportive, but perhaps knowing that I may not have as much time as he thought will weigh on him as it's weighing on me. I need to snap out of this and get hopeful. Right now I just feel doomed. And of course I'm looking back on everything I've done over the past ten years that has been wrong: high stress, no sleep, lots of alcohol, lots of processed food, dental problems (including one root canal), low vitamin D. Plus I'm a woman and I read the symptoms start earlier for us. Does anyone know of a doctor in NYC who is helpful? Preferably one that takes insurance? I *really* appreciate this group. The internet is full of information and most of it is extremely scary. Thanks in advance.


Hi apoe4homozyg. I'm sorry to hear about your personal news, your experience with your father, and that you are feeling so alone. You have definitely found a wonderful and supportive place. I could not agree more with BGTex above that your genes are not your destiny. There are so many things that you can do to prevent those genes from being turned on. You don't need to do them all at once. Even small changes can be preventative. I encourage you to try not to be hard on yourself about your past but to congratulate yourself for seeking out information that will help you to maintain your health from this point forward. There are so many resources here. I will highlight a couple to get you started.

You will find information about Searching for a Health Practitioner in our Wiki. A great place to start is our Dr. Stavia's Primer which will give you not only great information but also a prioritized list of preventative steps you can take. Again, please take your time. You don't need to make all of these changes at once. Often taking your time and moving slowly leads to more effective long term results.

I'm sure others will post here encouraging you on your journey. Feel free to reach out if you have questions! I'm glad you are here and look forward to your future posts.
Deb
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Re: New here, devastated 4/4, family history of AD

Postby CarrieS » Wed Jul 10, 2019 4:29 pm

apoe4homozyg wrote:Hello everyone,
Well today I got the news that I have two copies of E4. I'm devastated and alone. I wasn't prepared. My father has AD and it's my worst nightmare. I'm 41. I have started Dr. Bredesen's book the End of Alzheimer's. That's what led to me getting tested. I figured it's better to know what I'm working with, right? I still think that's true, but I don't know what to do with this information right now. I'm in NYC and I don't have a doctor who will be willing to order all the additional tests. I've tried to make appointments with Alzheimer's experts, but they tell me I'm too young to be seen. I'm worried to tell my lovely fiance. I know he'll be supportive, but perhaps knowing that I may not have as much time as he thought will weigh on him as it's weighing on me. I need to snap out of this and get hopeful. Right now I just feel doomed. And of course I'm looking back on everything I've done over the past ten years that has been wrong: high stress, no sleep, lots of alcohol, lots of processed food, dental problems (including one root canal), low vitamin D. Plus I'm a woman and I read the symptoms start earlier for us. Does anyone know of a doctor in NYC who is helpful? Preferably one that takes insurance? I *really* appreciate this group. The internet is full of information and most of it is extremely scary. Thanks in advance.

Hello apoe4homozyg, I'm also sorry to hear about your recent news and your experience with your father. My mother and her mother both had AD and I am a 4/4 like you. I agree with DebS and BGTex about genes not being our destiny and I believe that knowledge is power. The research supporting diet and lifestyle changes is very powerful. I feel very fortunate to live in a time when there is hope for the steps we can choose to take and insight into what each of us can do to personalize those steps based on our unique bodies. You've made an incredibly powerful step by reaching out to the members of this community. DebS has mentioned some great resources within this community (the Primer and the Wiki). May I encourage you to keep reaching out and asking questions as they surface. This How To Guide will give you some valuable tips and tricks to help you search for topic threads, post questions, etc. Hugs to you.
APOe4/4
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Re: New here, devastated 4/4, family history of AD

Postby NF52 » Wed Jul 10, 2019 5:54 pm

apoe4homozyg wrote:Hello everyone,
Well today I got the news that I have two copies of E4. I'm devastated and alone. I wasn't prepared. My father has AD and it's my worst nightmare. I'm 41. ...I don't know what to do with this information right now. I'm in NYC and I don't have a doctor who will be willing to order all the additional tests. I've tried to make appointments with Alzheimer's experts, but they tell me I'm too young to be seen. I'm worried to tell my lovely fiance. I know he'll be supportive, but perhaps knowing that I may not have as much time as he thought will weigh on him as it's weighing on me. I need to snap out of this and get hopeful. Right now I just feel doomed. ...Does anyone know of a doctor in NYC who is helpful? Preferably one that takes insurance? I *really* appreciate this group. The internet is full of information and most of it is extremely scary. Thanks in advance.
Hugs to a genetic "daughter" from someone who is ApoE 4/4, has been happily married for almost 40 years, with three smart, creative, and wildly different adult kids who are all ApoE 3/4 and two grandchildren who are just perfect! My brain is doing just fine, I know that because I passed extensive screening to be in a clinical trial of people with ApoE 4/4 who are 60-75 and healthy--and there are 1000's of us that old and older. "Berri" is an 84 year old 4/4 in Seattle who has been organizing Meet-Ups in her condo for months now--if you check the "Meet-Ups" category on the index page you'll meet her. She has a social calendar I couldn't manage!!

And guess what: I had decades of too little sleep, too much stress, processed food, kept several dentists in luxury cars (including a root canal abscess with "c-difficile" infection that required antibiotics for months). I didn't have too much alcohol but definitely carried too much weight (and still do, to a much lower degree). And yet I still scored higher on the GREs at the age of 57, when I went back to a challenging second Master's than I scored at age 17. So genes are not destiny!!! Your poor dad may have had multiple risk factors that you don't have.

So here's one possible answer to your doctor question: Lisa Mosconi,, Ph.D, co-director of of Director of the Weill Cornell Women’s Brain Initiative (WBI), and Associate Director of the Alzheimer’s Prevention Clinic with Dr. RIchard Isaccson, who has a large following online. As her bio says: "Dr. Mosconi is well known for her research on the early detection and prevention of Alzheimer’s disease." More to the point, she has gotten a huge grant from the National Institutes of Health to Study women your age (40-60) who have a family history and an increased risk of Alzheimer's disease. She is on the cutting edge of the growing consensus that eventually we will have personalized solutions and she's specifically interested in studying women before and during perimenopause. Here's a quote:
Our research is devoted to unraveling the causes of the increased risk in women. As a starting point, our brain imaging studies have demonstrated a link between estrogen declines and increased Alzheimer's risk in women. Our current NIH-sponsored brain imaging research builds upon those findings to further address the connections between female sex hormones, brain aging, and Alzheimer's risk.
As with any research study, only eligible participants can enroll. At the moment, we are enrolling women and men of age 40-65 years, with a family history of Alzheimer's, and no cognitive impairment or dementia.

If you are eligible and interested in participating in the WBI, we would be happy to provide more details about the study. Please contact Aneela Rahman (anr2781@med.cornell.edu), Hande Jackson (haj4001@med.cornell.edu), or Eva Schelbaum (evs4001@med.cornell.edu) for more information.

And here's a link to the brochure, which I've been meaning to find and share since I read an interview with her in the NYT back in April. So you've motivated to do that! While you may be too young for their focus on menopause, it can't hurt to talk to them now.
https://neurology.weill.cornell.edu/sites/default/files/wcmc_flyer_womens_health_study_0.pdf

Tell your lovely future spouse about this news--and don't be surprised if it takes him a while to grasp how much of a rollercoaster you are on. For people MY AGE (60-75) with ApoE 4/4, the likelihood that we will make it to 85 with no mild cognitive impairment or dementia is between 45% and 70%. Those are good odds, and I think they get better every year.
At your age, with billions being spent in academic research (not just drug trials), you should be very confident that you and your husband will have decades to share what life brings.

And one final piece of advice: Read the PRIMER as Deb and Carrie suggested. It's written by Stavia, who is 4/4, and a happy, world-traveling doctor in her late 50's--and who would tell you first to "take a deep breath, honey; it will be alright and you don't have to do everything at once." Stavia kept me sane in the early days!
4/4 and still an optimist!

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Re: New here, devastated 4/4, family history of AD

Postby apoe4homozyg » Thu Jul 11, 2019 10:08 am

Thank you all so much for the kind welcome and helpful links! The world looks so different now and I’m not happy about having to give up alcohol and my favorite foods, but I know in time I will have new favorites and happiness again. Thank you so much. Your posts are very helpful and reassuring.
41 yo premenopausal female 4/4 with strong family history

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Re: New here, devastated 4/4, family history of AD

Postby Fiver » Thu Jul 11, 2019 1:24 pm

THIS is great advice: :)

Tell your lovely future spouse about this news--and don't be surprised if it takes him a while to grasp how much of a rollercoaster you are on. For people MY AGE (60-75) with ApoE 4/4, the likelihood that we will make it to 85 with no mild cognitive impairment or dementia is between 45% and 70%. Those are good odds, and I think they get better every year. At your age, with billions being spent in academic research (not just drug trials), you should be very confident that you and your husband will have decades to share what life brings.

It will help you to have your spouse's support and it will help them to know why you are feeling this way.
Four relatives with AD. Concerned, but hopeful. Introverted, but will talk about science. Kinda into microgreens. First in line for gene-editing trial, despite risks.

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Re: New here, devastated 4/4, family history of AD

Postby apoe4homozyg » Thu Jul 11, 2019 4:24 pm

Fiver wrote:THIS is great advice: :)

Tell your lovely future spouse about this news--and don't be surprised if it takes him a while to grasp how much of a rollercoaster you are on. F.


Thank you so much! I told him last night and he was unfazed. He is convinced I’ll beat the odds and took me out to a Ketoflex meal (we’ve both been high carb, lots of gluten vegans for years). He’s even willing to give up drinking in solidarity. I’m lucky I have such a supportive partner! Thank you for the encouragement and HOPE!
41 yo premenopausal female 4/4 with strong family history

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Re: New here, devastated 4/4, family history of AD

Postby NF52 » Thu Jul 11, 2019 4:48 pm

apoe4homozyg wrote:
Fiver wrote:THIS is great advice.

Thank you so much! I told him last night and he was unfazed. He is convinced I’ll beat the odds and took me out to a Ketoflex meal (we’ve both been high carb, lots of gluten vegans for years). He’s even willing to give up drinking in solidarity. I’m lucky I have such a supportive partner! Thank you for the encouragement and HOPE!


Fiver and I just provided the encouragement. You two provided the hope and love. Well done!!
4/4 and still an optimist!

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Re: New here, devastated 4/4, family history of AD

Postby slacker » Fri Jul 12, 2019 4:54 am

apoe4homozyg wrote:Thank you so much! I told him last night and he was unfazed. He is convinced I’ll beat the odds and took me out to a Ketoflex meal (we’ve both been high carb, lots of gluten vegans for years). He’s even willing to give up drinking in solidarity. I’m lucky I have such a supportive partner! Thank you for the encouragement and HOPE!


This is fantastic news for many many reasons! Lifestyle changes are so much easier to implement when you have someone who is willing to actively support you and personally make the same commitments.
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