New arrival - still in shock

[Belfastman]

Hi all,

I received results from a 23andme Health and Ancestry DNA test three days ago. I had got it primarily to confirm if I had genes linked to Coeliac Disease and Lactose Intolerance, the test confirmed I did. It was t actually till yesterday that I noticed the report also stated that I was at increased risk for Alzheimers because I had two copies of the e4. variant in the APOE Gene. It was only when reading about it further that I realised how serious this is, to be honest it felt like I received a terminal diagnosis. I am 48 from my understanding of the odds I have about a 50 percentage chance of developing Alzheimers before I am 70. I have three daughters and I started trying to work out if I would be around for weddings or grandchildren etc etc.

What also concerns me is that I have noticed that I find it hard to recall names, sometimes even of people I work with. I also do daft things, this morning I noticed that i had put a bag of salad in the freezer Instead of the fridge after using it. i had thought I was just getting older but now it feels more serious.

Finding this site was a godsend, there is a lot of confusing information out there. I skimmed through the primer article it was incredibly useful and helped move me to a more positive mindset, it is good to know and good to know that there are positive things I can do.

Thank you to all of you who have clearly put substantial amounts of time into developing this site to help others.

[NF52]

Hi all,

I received results from a 23andme Health and Ancestry DNA test three days ago... I was at increased risk for Alzheimers because I had two copies of the e4. variant in the APOE Gene. It was only when reading about it further that I realised how serious this is, to be honest it felt like I received a terminal diagnosis. I am 48 from my understanding of the odds I have about a 50 percentage chance of developing Alzheimers before I am 70. I have three daughters and I started trying to work out if I would be around for weddings or grandchildren etc etc.

What also concerns me is that I have noticed that I find it hard to recall names, sometimes even of people I work with. I also do daft things, this morning I noticed that i had put a bag of salad in the freezer Instead of the fridge after using it. i had thought I was just getting older but now it feels more serious...

A warm welcome, Belfastman! If I had my druthers, I would immediately scrub all references like the one you found. I too saw a reference like that 6 years ago, when I was 62. it took years of slogging through current research to realize how many published studies from 20 years ago were relying on referrals to memory clinics to figure out what the odds were for us pretty darn unique people.

I doubt you would end your marriage simply because the the average length of marriages is 8 years, or send one of those daughters back because the the average number of kids per family is less than 2 in both the US and Northern Ireland--in case you're from that Belfast!

Before 23&me made genotyping popular, most studies of Alzheimer's diagnoses were made in U.S. memory clinics. Here's the catch: My 93 year old grandmother was not taken to a memory clinic when she began to show signs of dementia, nor was my mother or mother-in-law, both in their 80's. in the 1990's and early 2000's, most people came to a Memory Clinic when they were having early memory problems, and they were not given PET scans to be sure they had biomarkers of Alzheimer's. Nor were they given tests to see if they had low B-12, insulin resistance, diabetes, obstructive sleep apnea and other causes of cognitive issues in the 60's. My dad died when he was 67, of cardiac arrest brought on by poorly managed diabetes, no cardiac care until two years before his death. He had at least one copy of ApoE4. Yet his identical twin brother died of colon cancer (before colonoscopies were routine) in his mid-70's, still the CEO of a architectural engineering company. We are not doomed by the lack of knowledge and risk management of those in earlier generations!

Like you, I have always had problems remembering people's names, and even more their faces, if I see them occasionally or out of context. Made for a tough time as a grad school teacher, when every 22 year old looked alike to me! So does Howard Gardner, Harvard professor and author of dense books and the theory of Multiple Intelligences. Those are glitches, which all of us have. Putting lettuce in the freezer is simply an attentional blip, proving what researchers have found: None of us really does multi-tasking well, since we all lose the thread of conversations, situational awareness when driving, etc.

So here are much more accurate results from a large-scale meta-analysis of the long-term Framingham Heart Study, Rotterdam Study and two other studies: APOE-related risk of mild cognitive impairment and dementia for prevention trials: An analysis of four cohorts

The Generation Study elected to disclose the following “lifetime” risks of MCI [mild cognitive impairment] or dementia to its potential participants [Note: The more than 1000 participants were ages 60-75, cognitively healthy, with 2 copies of ApoE4. I was one of them.]: 30%–55% for individuals with APOE-e4/e4; 20%–25% for individuals with APOE-e3/e4 and -e2/e4 (with a note that risk might be lower for those with APOE-e2/e4); and 10%–15% for individuals with APOE-e3/e3, -e3/e2, and -e2/e2 (with a note that risk might be lower for those with APOE-e2/e3 and -e2/e2). These values are consistent with our findings, but use round numbers for intelligibility, and broader ranges to reflect statistical and other sources of uncertainty.

You will definitely be around for weddings and grandchildren, and may also be around to see those 3 daughters get advanced degrees (I know of several women with ApOE 4/4 in their 30's to 70's who work in neuroscience, law, finance, and non-profit boards).
By the time you are 55 or 60, I expect that routine tests will be able to monitor multiple factors that were unknown even 10 years ago. The feelings you have are absolutely normal; and as Stavia says in her Primer, they do get better with time. Especially when we feel that we have knowledge and tools to write our own story--not rely on someone's else misfortune to predict our lives.

Be well, my genetic cousin.

[AKA]

Hi all,

I received results from a 23andme Health and Ancestry DNA test three days ago. I had got it primarily to confirm if I had genes linked to Coeliac Disease and Lactose Intolerance, the test confirmed I did. It was t actually till yesterday that I noticed the report also stated that I was at increased risk for Alzheimers because I had two copies of the e4. variant in the APOE Gene. It was only when reading about it further that I realised how serious this is, to be honest it felt like I received a terminal diagnosis. I am 48 from my understanding of the odds I have about a 50 percentage chance of developing Alzheimers before I am 70. I have three daughters and I started trying to work out if I would be around for weddings or grandchildren etc etc.

What also concerns me is that I have noticed that I find it hard to recall names, sometimes even of people I work with. I also do daft things, this morning I noticed that i had put a bag of salad in the freezer Instead of the fridge after using it. i had thought I was just getting older but now it feels more serious.

Finding this site was a godsend, there is a lot of confusing information out there. I skimmed through the primer article it was incredibly useful and helped move me to a more positive mindset, it is good to know and good to know that there are positive things I can do.

Thank you to all of you who have clearly put substantial amounts of time into developing this site to help others.

Hi Belfastman,

Welcome to the apoe4 site, we're glad you found us! There is a wealth of information and a very supportive community here with a good deal of experience which I hope will be helpful to you as you navigate your next steps. It looks like you are off to a good start with skimming over the Primer. As you probably noted, it was written by a member physician who also carries 2 copies of the e4 gene. I found her article to be grounding with an empowering focus which put me on a better road.

As an intern on the site, it's my official role to welcome you and point out some areas of the site that may be useful. If you want a deeper read on particular topics, take a look at the Main Wiki page. There are links to a number of helpful topics including just finding out your e4 status. Also, "How-To" Get the most out of the ApoE4.info website is a helpful guide with instructions on using the quotes button to respond to other members, searching specific topics, and how to follow forums of interest and more. One more thing, Belfastman, I think it's never too late or never too early to get things checked out and begin making changes for the better. The signs you shared are worth looking into and coming up with a plan moving forward.

Again, a Warm Welcome to you!
Andrea
Apoe4 Intern

[floramaria]

What also concerns me is that I have noticed that I find it hard to recall names, sometimes even of people I work with. I also do daft things, this morning I noticed that i had put a bag of salad in the freezer Instead of the fridge after using it. i had thought I was just getting older but now it feels more serious.
I skimmed through the primer article it was incredibly useful and helped move me to a more positive mindset, it is good to know and good to know that there are positive things I can do.

Hi Belfastman, keeping in mind that stress is an important contributor in cognitive impairment, I agree that the “salad in the freezer Incident” could well have just been the result of lack of attention, or else of being stressed from learning your ApoE4/4 status. For those of us who carry the ApoE4 allele, we view changes from within the context of knowing we have increased risk, though as NF52 points out, nowhere near as dire as what you encountered. The primer offers good steps for improving your odds for remaining cognitively healthy for your entire long life. You also have your age in your favor.

My own cognitive problems manifested Primarily as speaking the wrong words. With what I found to be alarming frequency, the noun I intended to say got replaced with another word somewhere between my brain and my mouth. Many would dismiss this as “Just aging”. But for those of us with ApoE4 alleles, I think any misfires can also be a warning sign and call to action. I do think it serves us well to be especially attentive to cognitive changes and take a proactive approach. I have made most of the changes recommended in the primer and am following Dr Bredesen’s ReCODE protocol. My noun-replacement is very rare now. (and I have a couple of decades on you)

I’d encourage you to take steps to be sure that important biomarkers that are detailed in the Primer, especially those that would indicate insulin resistance and inflammation, are within recommended ranges. For me at least, taking action relieved a lot of my anxiety.

Best wishes to you on your journey!