Thoughts on Disclosure (Who have you told?)

[dfmcapecod]

In regards to privacy/protection, I recently searched this and there is a law in place (US): http://ginahelp.org/

And here's an article on the "loopholes": https://www.theatlantic.com/health/arch ... na/519216/

I haven't dug deep into this, so I'd love to hear from anyone who has.

This is impeding progress. The sooner we address this, the sooner more participants will raise their hand, answer questions, participate in research openly, leverage their own social media to share the findings of their own participation.

People are scared to death of having their identities stolen, being required to pay 3rd parties to protect them from poor practices of creditors and financial institutions, let alone needing to worry about securing their genome?

No wonder people feel uncomfortable discussing it. Look at all the energy we'll spend even just discussing if it's OK to discuss, share/participate, instead of just focusing on the cure. We need to participate, improve privacy laws legislatively and be vocal. Being silent won't help.

If I'm going to go down in a forgetful haze in my later years, I'm at least going to go out making noise about solving this. If not for me, my kids or someone else.

Speaking of which, where on this website is there an emphasis on promoting genetic information privacy and a collection of people working on its behalf? I haven't found it yet.

[dfmcapecod]

Even after I drew pictures of my mother and father and explained in the drawing how I inherited one copy of the apoe3 gene from my mother and one copy of the apoe4 gene from my father gifted accountant my husband he couldn’t follow along with my curious excitement.

Everyone copes differently, you probably like to intellectualize (like many people who use science to cope) - whereas your husband goes in a different direction.

My parents even though both of them are carrying at least one copy of the APOE4 allele, are not interested in participating in testing, lifestyle changes or understanding how it might be affecting their health. It's frustrating, but I accept that this is how they want to cope with their own health. I intend to use science to improve my odds.

[CoachDD]

I am so happy you posted this question - it is quite timely for me.

Welcome to this site, CoachDD. I am happy I posted this question too. I have discovered that this journey of learning about our genetic risks is profoundly overwhelming and/or life-changing for many of us. There are experts out there, like Bredesen, who provide specific tools for reducing AD risk, but there is not much discussion about how to handle all of this from a psychological perspective.

Much of your post resonates with me -- nearly everything except the lead toxicity. What specifically caught my eye was the insomnia and reactivated EBV. I have both. Although my sleep is currently not terrible, I truly envy people who can just go to bed and sleep. I have a long history of fatigue, but it has been crippling since sometime this fall; the reactivated EBV (along with persistent C. pneumoniae) was diagnosed about a month ago.

I am sorry you are dealing with this too. I am currently working with a FM (NP) doc who is addressing my EBV issues, so I'll let you know what she recommends. Sleep eludes me often - and I am VERY concerned about the damage it has done and continues to do, so I know it is vital for me to get this under control. I have tried almost every recommendation out there (with the exception of prescribed sleeping pills) - and I am sleeping better lately, but the last two months were rough. There are times over the past 8-10 years where I only slept two or three hours (for months!). I strongly believe it has to do with methylation issues, so we are working on that too. Really hoping you were able to get deep, restorative sleep last night!

I just recently told my husband some general info - but to be blunt, he does NOT understand the gravity of this situation. Since I've been dealing with significant issues (lack of energy, fatigue, brain fog, etc.) for quite some time now, he's convinced that I'm just depressed and need to exercise and get out more - and I thought so too, until recently. He's never been a caregiver/nurturer, so I've learned to look elsewhere for this type of support (or a shoulder to cry on).

Yep, sounds familiar. If we don't feel safe sharing our genetic findings with our friends, and there is only so much we can discuss it with our immediate family, it can be pretty isolating. And being sick is isolating. My background is psychology, and although this is not a conventional view,

I have come to believe that most of what people label "depression" is really a symptom of something that is going on in the body. Kelly Brogan promotes this idea in her book, A Mind of Your Own.

Yes. . . love, love. love Kelly Brogan! I've recommended her site to a few people - she's way ahead of her time.

Thanks for the links about privacy law and loopholes.

I will look at them later (after I sleep!). Hang in there!

Please don't get too excited or get your hopes up - there is so much more to be done on this front. And from what I understand, the current administration is considering changing them (not in a good way).

[CoachDD]

In regards to privacy/protection, I recently searched this and there is a law in place (US): http://ginahelp.org/

And here's an article on the "loopholes": https://www.theatlantic.com/health/arch ... na/519216/

I haven't dug deep into this, so I'd love to hear from anyone who has.

This is impeding progress. The sooner we address this, the sooner more participants will raise their hand, answer questions, participate in research openly, leverage their own social media to share the findings of their own participation.

People are scared to death of having their identities stolen, being required to pay 3rd parties to protect them from poor practices of creditors and financial institutions, let alone needing to worry about securing their genome?

No wonder people feel uncomfortable discussing it. Look at all the energy we'll spend even just discussing if it's OK to discuss, share/participate, instead of just focusing on the cure. We need to participate, improve privacy laws legislatively and be vocal. Being silent won't help.

If I'm going to go down in a forgetful haze in my later years, I'm at least going to go out making noise about solving this. If not for me, my kids or someone else.

Speaking of which, where on this website is there an emphasis on promoting genetic information privacy and a collection of people working on its behalf? I haven't found it yet.

Agreed - these links are merely informational only. There is so much more to be done on this front. And from what I understand, the current administration is considering changing them (not in a good way).

[CoachDD]

Welcome CoachDD to the apoe4.info website and thank you for sharing your story. This is an excellent place to share information and ask questions. One of our resources for new members is the Primer. It is difficult but not uncommon to have a spouse who doesn't understand. You are fortunate to have such good friends and a supportive community surrounding you. Hearing that you are home bound you might also want to consider tele-health coaching.

There are several Functional Medicine and Bredesen trained health coaches that support this website that might be a good fit for your situation, particularly once you are able to locate a physician.

Hi Sara! I so appreciate your post. . . and truth be told, I'm currently in the FMCA program! Once I left my job, I decided to make a career change - but must admit, there are times I struggle to keep up and retain information. I am hopeful to get my symptoms under control and be able to find work in this field once I am certified (tentatively set for August 2018). YAY!! I have been on a long journey to get better and FM definitely resonated with me. I am currently working with a FM (ND) doctor, but feel it may be time to get further analysis and support. Is there a process set up to connect with a FM Health Coach (Bredesen trained)? Also, any recommendations for doctors (also trained in the Bredesen Protocol) in the Northeast area or even NY/NJ will be greatly appreciated!

[Sara]

Wow! Congratulations on being an FMCA student. Thats great and a great way to move towards a healthier you. You have probably been working with a student coach as well. Some FMCA students are interning on this (apoe4.info) site. That might be an option for you as well. I do know and can personally recommend a Dr. Anita Burock Stotts in the Albany area of NYS. She is an internist who trained through the Institute for Functional Medicine and I believe she completed the IFM / Bredesen training last summer. Sounds like you are down closer to NJ though and I'm pretty sure you can find someone closer to you. Good luck.

[Anna]

We need to participate, improve privacy laws legislatively and be vocal. Being silent won't help. If I'm going to go down in a forgetful haze in my later years, I'm at least going to go out making noise about solving this. If not for me, my kids or someone else.

I love this attitude! I would like to head in this direction myself -- in the interest of making a difference as well as being authentic --but it is scary. There is much to consider. I am truly grateful for those who are publicly disclosing the fact that they carry ApoE4, fighting for privacy rights, and/or taking steps to advance research. Although I don't think this potentially life-altering path of learning one's ApoE status is for everyone, I do think it is good for society that so many of us are learning our status. It puts pressure on the system.

[Anna]

I am sorry you are dealing with this too.

If you want to compare notes on EBV and/or insomnia, feel free to PM me.

[Jennifer]

Great thread because I too struggle with this one. I am 4/4 and 40 years old. My husband encouraged me to find out - so he knows and is incredibly supportive (he's 3/3). My daughter is only 11, so she doesn't know (she is obviously 4/3). I've explained changes in our lifestyle as "I have risks and am working to be healthier." I have told 1 close friend and am planning to disclose to 1 other close friend.

In regards to family, I have told my brother that I had testing done and am aware of some genetic risks, if he would like to know. He's never responded to that. I don't think he would want to know anyway (that sort of thing is not in his nature). I had a similar vague conversation with my mother, who pointedly didn't answer, as well as my stepmother because I have a half brother (my dad has dementia, but I think it will be diagnosed as AD). I also got no response. I haven't pushed on any of that.

I have not told my doctor and will not tell my doctor (normal PCP in a standard giant medical office). I have zero faith that it will not end up in my records. I read medical records every day as part of my job and you would not believe what gets put in there. I did ask my doctor for some blood tests as recommended under the Bresden Protocol, but she would not approve it because there was "no need" for what I was asking for. The nurse offered to let me talk to the doctor to explain why I wanted the tests, and I declined. I do not have long term care insurance yet.

[Anna]

Jennifer, I am glad to know that I am not the only one struggling with knowing what to say to people and IF I should say anything at all.

What you said here is such sad but true statement about what we are up against while working within the system to prevent cognitive decline:

I have not told my doctor and will not tell my doctor (normal PCP in a standard giant medical office). I have zero faith that it will not end up in my records. I read medical records every day as part of my job and you would not believe what gets put in there. I did ask my doctor for some blood tests as recommended under the Bresden Protocol, but she would not approve it because there was "no need" for what I was asking for.