Brand new to group - 1st post

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jkramer65
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Brand new to group - 1st post

Post by jkramer65 »

Hi everyone, I am hoping this group is the support I need as I'm going through all of what you all probably have experienced. I'm just about 53. My father died in 2011 of AD at age 87. His brother had Lewie Body (lived to 89) and my grandmother had something -- back then it was called senile. She lived to be 95. So there is an obvious paternal family history. My mother is almost 92 and is just fine. She has a little forgetfulness but that is because she is just damn old! There is no history of AD on her side. She has an 87 yo brother who is perfect mentally. I have two sisters: one is 68 and just fine and the other, who is 64 was just diagnosed with AD. I'm much younger than them both as you can see and my cognition is fine. Needless to say I'm freaking out. This is fairly new. I did 23 and me and it says I have e4/e4. Which double freaks me out! I don't know if my dad had the mutation but he must have and my AD sister has not been tested. I'm not sure how reliable 23 and me is but I then did another home test by a place called Life Extension and it came back the same - e4/e4. But they want to sell supplements. I've not had a "real" genetic test per se. But I think I say that because I'm scared of it being real. I'm also SHOCKED I have 2 copies because of the lack of my mother's family history. But maybe that is a positive since if I do then obviously there is an example of people with the mutation not getting the disease. I've recently found Dr. Bredesen's book and want to get on the protocol stat. I'm eager to get into prevention trials if I can. My lifestyle has been overall quite healthy so I don't have to change too much - just take a ton of supplements. The funny thing is is that my dad was in perfect shape. He ate an incredibly healthy diet, exercised every day and barely drank. He got AD. My mother smoked for 50 years, drank like a fish and never exercised. EVER. She he has slept like crap all her life and did everything you aren't supposed to do. Yet she is fine. So who knows. Anyway, I know I am rambling and appreciate you all taking the time to listen to my whoas. I'm scared. And I know that I can't let my stress about this get me sick. But right now I'm in a pretty bad mental place about it. This is all very new. Thanks.
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Re: Brand new to group - 1st post

Post by NF52 »

jkramer65 wrote:Hi everyone, I am hoping this group is the support I need as I'm going through all of what you all probably have experienced... I'm scared. And I know that I can't let my stress about this get me sick. But right now I'm in a pretty bad mental place about it. This is all very new. Thanks.
Hi Jkramer!

Thanks for a wonderful introduction; I feel like I know you already! Since you used the phrase "you all" twice, I'm thinking maybe you are from slightly further south than my adopted state of Virginia, and have lots of opportunities to enjoy the outdoors year-round. I'm also a 4/4 and a healthy 66, and hope to continue that way for a long time--with no expectation for being a feisty lady like your 92 year old mother. I have known my results from 23 & me for 4 years and had them confirmed multiple times for a clinical trial for people like us ages 60-75.

Like many people on this forum, It was a gut punch for a long time. So you've come to the right place to find people who don't think you rambled at all! And you're right--the good news is that genes are not fate--they are only a small piece of the puzzle. (I'm not suggesting that you start drinking, smoking, give up healthy food, sleep and exercise like your mother, but at 92 she's got some turbo-charged resilience going on there.)

You're also right that since you inherited one copy of ApoE 4 from each parent, they had some level of risk. But you are only a 50% copy of each of them, and a 25% copy of each of your grandparents, roughly. So my guess is there are some protective genes on both sides. Your dad and his brother lived into their late 80's which is actually well beyond what the life expectancy for males of their generation would have been. According to one source, the life expectancy for your dad at birth in 1924 was roughly 56 years. By the time he turned 80 his statistical life expectancy was 85. Here's the source for that: Infoplease

Alzheimer's is not simply a disease that people with ApoE 4 develop; the risk increases with age for all people, from lots of possible factors, some more under our control than others. A 2017 analyses of 4 large cohorts of people in different cities here and in Europe found a broad range of risk: For people ages 60-75 now, with ApoE 4/4 they have a likely risk of 30%- 55% for either Mild Cognitive Impairment (MCI) or dementia by the age of 85. That means 45-70% of people either sailed past 85 healthy, or had other things that caused their death by that age. And that's not counting lots of exciting developments in lifestyle interventions and drugs to prevent amyloid plaques and tau tangles in the brain.

I figure the more I try to handle the big stuff--reducing stress, getting enough sleep, exercise and healthy foods, limited alcohol, and lots of time for my husband and grandchildren--the more my brain will do its part to keep on keeping on. Some supplements may help, but to get an intro to that whole complicated subject, I suggest browsing the PRIMER, written by a physician-member, Stavia, who is a few years older than you and also has a strong family history of AD and two copies of ApoE4. Her description of Simple Steps will help you to feel like you are already doing most, if not all, of what you need to do to stay healthy.

Your sister's diagnosis has to be a terrible shock and sorrow. Even though she is 11 years older than you are, I'm sure you can still remember when she was a true "big sister" in your childhood. It can be very delicate to offer advice to someone who has received that diagnosis. You may want to be more of a sounding board than suggesting specific options for her or her family.
What your sister and her family may want most is for you to be ready to see her still and always as the same person she was, with some changes that you can adapt to handle.

This forum is not part of the Alzheimer's Asssociation, but they can be a great resource for caregiver support groups and suggestions. Not sure if you are close enough to be involved in giving emotional support to her and her family, but you may want to suggest that they connect with clinical trials for people with early Alzheimer's. You can check those out by zip code in ClinicalTrialsFinder, which is run by the National Institute on Aging, part of the National Institute of Health. You can also look for trials for "healthy volunteers" through there.

And here's a final bit of advice from "Searcher", one of the wise souls on this forum:
Searcher wrote:The one thing missing, or feeble, in most protocols for preventing Alzheimer's, is emotional well-being... efforts to prevent Alzheimer's can be carried to an extreme where they rob one of a full and meaningful life in the present. It's as if Alzheimer's starts ruining one's life years (or decades) before it occurs. So much remains to be discovered about the intricate mechanisms and interactions in the human body that even those who get all the markers right are not guaranteed to be spared...If fear of Alzheimer's prompts a more full and meaningful life, then it can be a blessing. And most of us could do with a larger helping of blessings.
Be well, Jkramer65. And enjoy that birthday when it arrives!
4/4 and still an optimist!
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Re: Brand new to group - 1st post

Post by Karengo »

jkramer65 wrote:Hi everyone, I am hoping this group is the support I need as I'm going through all of what you all probably have experienced...Anyway, I know I am rambling and appreciate you all taking the time to listen to my whoas. I'm scared. And I know that I can't let my stress about this get me sick. But right now I'm in a pretty bad mental place about it. This is all very new. Thanks.
Hello jkramer65: Thank you for your posting and for being real about how you're feeling. We're glad you've found this community and that you're here! I trust you'll find plenty of support and understanding offered by our members who know only too well what you're going through. I appreciate you've had a bit of a shock with this news. It's only natural that you would be feeling scared right now. Hang in there! Things will get easier and you'll find yourself in a better state of mind.

For now, let yourself go through what you need to, be with the news and trust you'll come through the other side. You're very aware to notice that some people can be fine examples of leading healthy lifestyles - like your dad - and others can be burning the candle at both ends yet seem to remain unscathed by health issues - like your mom. it doesn't really make any sense. Similarly, there are people with e4/e4 who can be unaffected and others who don't have either who can end up with AD diagnosis!

All we can do is to be as healthy as we can be practicing a healthy lifestyle incorporating aspects like sleep, movement, social connections and supplements, and learning what we can along the way. I believe you'll find Bredersen's book is a great place for you to start. There are also resources available here on the site such as Primer created by physician member, Stavia and here's a link to Wiki-Bredsen

Take your time to explore the site. You can use the spyglass icon located on the top right corner of the web page to search on any topics or you can use Wiki Feel free to ask questions and post comments as you feel inspired. We're all here to support each other as well as share information and any discoveries as we journey to being as healthy as we can and enjoying life as much as possible along the way!

May you feel supported as you go through this transition period and receive the help and understanding you need to get through.

Take care!
~Karengo
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FMCA certified Health Coach
"For whatever we lose like a you or a me, it's always ourselves we find in the sea"
jkramer65
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Re: Brand new to group - 1st post

Post by jkramer65 »

Thank you both so much!

Your posts made me cry. It is nice to know people understand. My head is spinning. It was so awful seeing my dad disappear and will be hard to see my sister go through it. And to think that could be me at some point -- putting such a burden on whomever my caregiver will be as I have no children. My father had my mom and me. My sister has her husband, kids, my other sister and me. She is being a bit passive to her diagnosis and frankly the doctors were quite dismissive -- take two aricept and don't call me in the morning kind of thing. She had some traumatic issues with hard drugs in the past so I have to think that helped her "convert" if you will. And she is so much younger than my dad was when he was diagnosed with MCI (he was 74 at the time) it really upsets me. I want her to get into a trial but I'm having to be gentle about it. She is not so open to it at this time.

As for me...I'm very proactive like my mom! I'm going to attack this head on. Scour and research all that is posted. Find preventative trials etc. I'm just going through the initial freak out. I might get some therapy about it. I'm messing with my own head. And I know that stress can do so much damage.

NF52...So glad you are 66 and all good so far! Your percentages from that trial actually give some comfort. I actually grew up in Wisconsin and didn't realized I said "you all twice! Funny. I currently live outside of New York City.

Thank you again and looking forward to my new community!
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Re: Brand new to group - 1st post

Post by Indywoman »

A big hello to you Jkramer65 and a big hug as well. Like you, I had Life Extension do a repeat test, and yes, it also confirmed 23andme and my ApoE4/4 status. I learned all this in early February, and I would say it took four months to work out of the depression I felt. So, I think you just have to let the news sink in, and as trite as it sounds to anyone in pain over anything, know that this is probably not the way you will feel down the road. These first months are the hardest, but know that most of us on this site have seen relatives and family, like your dad and now your sister, struggling and disappearing from the people they were and the person we loved. So we have reason to be "scared" as you so aptly said. So here is my advice 6 months out.

1. Read everything you can. Dr. Bredesen's book. Dr. Gundry. The primer on this site. Watch some of the videos about what we do know. This alone gives you empowering knowledge- a form of control in what initially just seems like dismal chaos.

2. Read the stories of other people on this site. The moderators and the interns are SO helpful. Reading the stories of others will make you feel less alone and more comforted. I remember thinking, "Wow, these ApoE 4/4's (and 3/4's) are so smart. And, they get it." It is amazing how a community of others, even online can help us begin to heal.

3. Tell a few people close to you, whether those are friends or family or both. Secrets gnaw on our well being. Of course we are scared that these confidantes who know our status will now analyze any slips we make, but I had to let go of that. Decide that sharing will help you heal, and that this is more important than worrying about your whether your news will upset them, or worrying about 'a look' from them if you forget a fact or can't remember a word. Remind yourself that this happens to everyone and don't go down the rabbit hole.

4. As others have said, focus on the big things. Get 7.5-8 hours of sleep a night. Meditate for 15 minutes a day. Get cardio exercise most days. And, begin to make some changes in diet. I have been vegan for three years and vegetarian for twenty, but do eat eggs from chickens raised by one of my former students. I had already let go of dairy, but giving up grains and sugar was HARD and still is. I slip like everyone on this site, but remember that "a slip is not a fall". Get back on your program. And, I do eat a number of beans (Dr. Gundry is more harsh on these than Dr. Bredesen) because I need the protein, but do rinse and overnight soak the nuts and even the canned beans I eat. You said you already have a pretty healthy lifestyle, so continue that and kudos to you, but modify it with the research that is current. For example, I was shocked at the research on how important sleep is. Here is a good example.

https://www.theguardian.com/lifeandstyl ... y-we-sleep

5. Know that it gets better. It really does! While there will be relapses, know that finding out the news can be the hardest part. In my case, I have made some 'carpe diem' choices. Learning the news will vary for everyone, but it really can make life richer. I am 64, and wish I had known this 4/4 status at your age. My heart went out to you when I saw that you cried upon reading some responses to your post. I did too. Many have helped on this site, and you will in turn help others. Please know that you have a very knowledgeable and supportive community...
4/4. Do something today that your future self will thank you for.
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Re: Brand new to group - 1st post

Post by Fiver »

Hello JKramer65. Sending warm wishes your way. You got a "surprise" from the side of the family where we might have counted on a E3 or E2. What you're feeling is very normal.

It might help to know that there are many other genes and environmental factors other than E4 that play a role. Given that most of your family members were diagnosed with AD so late in life I would suspect that you also have some protective genes mixed in there....ones we don't even know about yet. Plus, you have this knowledge, this site, and modern medicine on your side.

I can say that the shock and worry does get better over time. And if you can use some of it as motivation to learn what you can and make changes to reduce your risk (and improve your overall health) then something positive comes from it.
jkramer65
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Re: Brand new to group - 1st post

Post by jkramer65 »

Thanks everyone. I have to think there are some protective measure on my mother's side since she lived an unhealthy life and still is fine at 92. Yes my grandmother, uncle and dad were fairly late onset. But my sister is only 64. However...I will say that she had a period of years where she was involved with some serious drugs (smoking crack) and I have to think that did something to her brain. That is the one odd variable for her. She said she is willing to do 23 and me to see if she has the variant so I would like that to happen just for shits and giggles. I've definitely lived the best lifestyle of my sisters but my oldest sister (68) is also fine so far and she, like my mother, has not lived a very healthy life and still even smokes! Who knows!! It is all messing with my mind. But you are right If it makes me get even healthier that is a benefit of this entire exercise. Are there people on the RECODE protocol on this site? I'm debating going to an actual Breseden trained physician to go through the entire workup. OR have my doctor order tests foe me and have someone trained to analyze. Just curious.
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Re: Brand new to group - 1st post

Post by NF52 »

jkramer65 wrote: Are there people on the RECODE protocol on this site? I'm debating going to an actual Breseden trained physician to go through the entire workup. OR have my doctor order tests foe me and have someone trained to analyze. Just curious.
Hi again, jkramer65!

Glad to hear that you're a former Wisconsin native who has found a second home outside of NYC! Although a NY native, I spent my high school years in Minnesota, So we both know that February in MN or WI means the morning forecast is "10 below for the high, with a 30 below wind chill" and that "spring" means "early May". But some of the nicest people in the world in both states!!

People on this site use lots of different sources for advice, which is one of the things that makes it a little intimidating to decide where to go for advice, either online or in person. Even using Bredesen-informed protocols can be done individually, or by going to a Bredesen-trained doctor, or a doctor who practices what is sometimes called "functional medicine" or by using online ReCode services (which are careful to note that they provide medical information and not advice). Often people start with the Dr. Stavia's List of Basic Strategies in the Primer.

Here's my own brief summary of the range of choices, organized roughly by which is closest to what you are probably currently doing. Each may come with costs that are not covered by insurance, so it's a good idea to let yourself take some time to get information on the choices and decide what works best for your situation.

1. You can start with your own doctor, see what she will recommend and what your insurance will cover. [You may want to think about asking your doctor whether she will keep any genetic information you share out of your chart before you tell her you have ApoE 4/4. My doctor was fine with that, and we've had several good conversations.} Right now, under the GINA act http://ginahelp.org/ you cannot be discriminated against because of genetic information for health insurance, but that's not true for long-term care insurance. My husband and I purchased a LTC policy before I found out my results based on our family history; that too is a very individual choice:
As of the date this resource was written (May 2010), GINA’s protections for insurance apply only to health insurance. They do not apply to life, long-term care, or disability insurance. Some state laws may apply to these types of coverage. Check with your state insurance commissioner’s office for more information.
2. You can choose to privately order tests that your insurance won't cover. This is easy to do online through several companies and usually you simply print out an order form, take it to a local blood lab and within a few days to a week have an emailed report. I did that for an advanced lipid test (the NMR profile) because of family history, early on, and have added a few others over time. I have shared those results with my own doctor and with the staff of the clinical study that I'm in for ApoE 4/4 people. Neither my doctor nor the study has a problem with my having these tests done.

3. You can go to a Bredesen-trained or ApoE 4-aware practitioner. Our Wiki has a list of those who have been either recommended by our users as aware of the needs of ApoE 4 patients. ApoE4-Aware Healthcare Practitioners One of those recommended is in NYC. You can also Google that in your own area.

4. You can go to either the Dr. Bredesen/ MPI Cognition site MPI Cognition or the recently formed AHNP:Precision Health which is now offering a complete package of both lab tests and a ReCODE report. Please be aware that both MPI Cognition and AHNP are providing a personalized report based on your history and your labs, but specifically state that you should work with your health care professional, as they are offering medical information to participants, not medical advice.

You may want to get some preliminary information on a few areas that seem pertinent to your family history (in my case that was heart health, insulin resistance and LDL-particle levels) and then look at shoring those up. Lots of wise people (Stavia, our Primer doctor/author included) recommend doing a few things at a time--unless you like going turbo-charged!
4/4 and still an optimist!
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Re: Brand new to group - 1st post

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Re: Brand new to group - 1st post

Post by CoachDD »

Greetings jkramer65 and FRED6771!

I am so happy both of you found this site and like others have said, there is a tremendous amount of information and support on this forum.

NF52 has given some wise words and suggestions here too, but I'll add one more - consider utilizing the Health Coaches who are available to help guide you through this journey:
https://wiki.apoe4.info/wiki/ApoE4-Awar ... th_Coaches
Learning to Live (3/4)
Certified Health and Wellness Coach ~ Functional Medicine Coaching Academy
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