Processing Promethease (newbie intro)

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
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Stavia
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Re: Processing Promethease (newbie intro)

Post by Stavia »

Anna, many of us move past the grief and terror and come to a place where we feel our lives are better that we know. But the terror you are feeling now is real for you. Please believe it will fade.
When I found out I curled into a fetal position and couldn't get out of bed for a week. I'm not exaggerating. I couldn't work or do anything. I was too scared to eat for months. The fear consumed every waking minute.
It's gone now. Took about a year to go.
I have a strong personal philosophy, one that got me through years of a nasty head injury.
I don't have a choice what happens to me, but I always have a choice how I deal with it.
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Re: Processing Promethease (newbie intro)

Post by Anna »

Stavia, you're right; it's terrifying! If I wasn't so worried about the impact on my family, I might have curled into a fetal position too. I'm not sure why, but I'm already making progress. Yes, I'd do almost anything to ditch one of those ApoE4's; it's on my mind almost constantly; and sleep has been rough. But I'm mostly functioning and am occasionally catching myself enjoying the moment. As much as I'm contemplating the horrors of neurodegenerative disease, I'm also contemplating life -- getting my priorities straight, counting my blessings, noticing beauty, finding meaning, etc. Life goes on.
~Anna
4/4 but so much more
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Stavia
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Re: Processing Promethease (newbie intro)

Post by Stavia »

It will fade Anna, I promise. In the meantime your attitude is great.
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Re: Processing Promethease (newbie intro)

Post by Anna »

Well, it has been just over a year since my last post. I intentionally decided to give it a year so that I could come back to this group after having had time to digest the 4/4 status and become educated about it at my own pace. I am picking up exactly where I left off because I noticed that quite a few people have viewed this conversation, and I believe there is value for current "newbies" in reading this reflection.

Am I glad to know? This is a question I ask myself frequently. Honestly, I'm not sure. On the one hand, I am taking active steps to minimize cognitive decline, and I do feel empowered to have an impact on my brain health. On the other hand, the knowledge of my risk has negatively altered the way I think about my future as well as my resilience when other things in my life don't go well. In many ways, this journey has been like any other grief experience -- colored by good days and bad days as well as a blend of denial and acceptance that is slowly moving toward acceptance. It has changed my perspective on life -- in good ways and not-so-good ways; mostly, my vision of what is important quickly became much clearer.

I have come to the conclusion that the difficulty of this journey is grossly underestimated in this new era of exploring our genetic code. Dale Bredesen (author of The End of Alzheimer's) advocates that everyone get a "cognoscopy," which includes testing your ApoE status and cognitive function. Maybe I will change my mind later, but at this point in my journey, I disagree. His research (essentially using a functional medicine approach to reverse cognitive decline) is exciting and gives me hope, but most of these interventions are things people should be doing anyway. When 23andMe added ApoE results to their basic health report (fortunately considering this to be a sensitive item so customers don't accidentally discover their status), my heart sank a bit. I guess what I'm trying to say is that more attention needs to be paid to the psychological impact of peering into the crystal ball and discovering something of this magnitude. I have encountered a lot of discussion about how "genetics is not destiny" but not much on how frightening, lonely, or depressing this journey might be.

Disclosure is another issue that is not really being adequately discussed. It's tough to suddenly know your risk and not know who you should tell. Once you tell, you can't un-tell. And telling family members can mean telling them something about their own genes, which they may not want to know. I worry about insurability, job prospects, being viewed differently, people reading too much into forgetful moments, and people just not understanding. So for now, I have been extremely cautious.

On being empowered . . . Here are some things that knowing my status has motivated me to do. My guiding principle is that my brain health depends on the health of the rest of my body. So I am working with a functional medicine MD to optimize levels of nutrients and hormones, improve gut health, and address other root causes of current disease states. I have further improved my diet. I have become better at taking time to rest, saying no, and not letting my needs be drowned out by the needs of others. And I make a conscious effort to practice gratitude, as well as to do things that I find to be meaningful. I know I still have room for improvement (exercise and mindfulness come to mind), but knowing that I have stepped up my game is comforting.

What would I recommend for anyone else who is alarmed by learning their ApoE status? These suggested steps are what helped me handle the news . . . 1) Keep in mind that ApoE is only one piece of your overall disease risk (or projected longevity) puzzle; there are many "bad" genes that you avoided, and no genetic service is looking at overall risk. When you look at the statistics, remember that these numbers include people who have not made the recommended lifestyle changes. 2) Start making lifestyle changes. Ease your way into a whole food, nutrient-rich, clean (mostly organic) diet that emphasizes vegetables and healthy fats and drastically reduces refined carbs. This may sound hard or impossible; all I can say is it really has not been difficult for me (perhaps because I didn't try to change it all at once, and I'm not trying to do it perfectly). Exercise. Value sleep. 3) Educate yourself, but do it slowly. I found that in the beginning, I was so busy grieving that I couldn't really digest the information I was reading. I eventually reached a point where it was so fascinating that I couldn't help but to learn about it. 4) Carefully consider your support system. The support is crucial, but also tricky. Being cautious about disclosure, my approach has been to focus on fostering my friendships and relationships. 5) Go out and do meaningful things. It will not only keep you from dwelling on ApoE4, it will make you feel better about your life. 6) Allow yourself to grieve (I cried a lot when I was alone -- in the car, in the bathroom), but I think this was necessary. Know that Stavia was right; it does get better. Much better.
~Anna
4/4 but so much more
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Re: Processing Promethease (newbie intro)

Post by floramaria »

Anna wrote:Well, it has been just over a year since my last post. I intentionally decided to give it a year so that I could come back to this group after having had time to digest the 4/4 status and become educated about it at my own pace. I am picking up exactly where I left off because I noticed that quite a few people have viewed this conversation, and I believe there is value for current "newbies" in reading this reflection.
Thank you, Anna for posting your reflections. It is so good to read your update, one year into the journey, and that it has, indeed, gotten better for you. I appreciate your honesty and perspective. Your sharing your own experience, including your ambivalence about the impact of learning your ApoE4 status, and also your recommendations will be valuable for people who are just beginning. Congratulations on all the positive changes you have made.
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Re: Processing Promethease (newbie intro)

Post by Anna »

Thanks Floramaria :)
~Anna
4/4 but so much more
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Re: Processing Promethease (newbie intro)

Post by Julie G »

Beautifully said, {{{Anna.}}} The grief process, that accompanies this revelation, is very real and all too often we pretend that we've breezed past it to our "new normals" when in reality we're somewhere on that journey. Many things that you said resonate with me, but the strongest is:
On the other hand, the knowledge of my risk has negatively altered the way I think about my future as well as my resilience when other things in my life don't go well. In many ways, this journey has been like any other grief experience -- colored by good days and bad days as well as a blend of denial and acceptance that is slowly moving toward acceptance.
On bad days, I know (in a guttural way) that I'll likely succumb so I'm trying to frantically fit all of my living into a condensed space before the inevitable. On good days, I tell myself to relax and trust that what I'm doing is enough to spare me. All in all, I'm a completely different person before and after "the knowing." I wish I could go back to the innocence, but I'm profoundly grateful for the wake up call given the change in my health and cognition trajectory.

We're very lucky to have several new FMCA interns, who happen to be psychologists, tworking with us to create information that may be helpful to all of us experiencing this process. Kudos to you for taking steps to take better care of your self, Anna. -xo
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Re: Processing Promethease (newbie intro)

Post by Anna »

Thanks Julie. That's just it; the knowing results in a huge personal transformation. It has been painful, but it has also enabled a paradigm shift. I'm not quite at the point you describe of squeezing in the living, but I have a lot more clarity about what is important.
On the days that my mind goes to wishing I could revert back to the innocence, I tell myself that knowing is not the problem; it is the solution.

Good to hear there are some psychologists/FMCA interns working to address the psychological aspects of this process. Although I'm not currently practicing, clinical psychology is my background too, so this topic is interesting to me on that level too.
~Anna
4/4 but so much more
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Re: Processing Promethease (newbie intro)

Post by Jan »

Anna, as a psychologist you will understand the power of community, and the determination of personal will. The power of community you have in this site. And you chart your personal will through choices going forward. Strong factors in your favor, for the as yet unwritten future. We all want to stand with you for the future.
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Re: Processing Promethease (newbie intro)

Post by Anna »

Thank you Jan :) Unwritten future will be my guiding thought today.
~Anna
4/4 but so much more
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