New and scared 3/4

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Sheilah
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New and scared 3/4

Post by Sheilah »

Hi - About a week ago I found out that I am 3/4. Been a little bit of a rollercoaster but I knew it was a possibility so have started making changes suggested here and elsewhere and had been kind of settling into this. Tonight I registered for the APT Webstudy and took the tests. My CFI was 8 and that has me really really scared since I read that ‘normal’ is 0. I know that the study is suppose to help measure things over time and I don’t have the rest of the results yet, but this is scaring me even more than the 3/4, maybe because it is making it seem more real. Would love to hear from anyone else who has gone through this phase and come out on the other side in a calmer, more hopeful state. Thank you all for being here.
NF52
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Re: New and scared 3/4

Post by NF52 »

Sheilah wrote: Fri May 31, 2024 8:51 pm Hi - About a week ago I found out that I am 3/4. Been a little bit of a rollercoaster but I knew it was a possibility so have started making changes suggested here and elsewhere and had been kind of settling into this. Tonight I registered for the APT Webstudy and took the tests. My CFI was 8 and that has me really really scared since I read that ‘normal’ is 0. I know that the study is suppose to help measure things over time and I don’t have the rest of the results yet, but this is scaring me even more than the 3/4, maybe because it is making it seem more real. Would love to hear from anyone else who has gone through this phase and come out on the other side in a calmer, more hopeful state. Thank you all for being here.
Hi Sheila,

On behalf of the Support Team and this whole community, I'm so glad you posted here tonight. Finding out you have ApoE 3/4 is a rollercoaster! And like all rollercoasters, it can take your breath away and leave you frazzled and maybe feeling unmoored. If you were on an actual rollercoaster, I wouldn't recommend taking even a multiplication test, so it probably isn't a fair measure of how you're doing to have you take the APT Webstudy test on an emotional rollercoaster.

So it's important to take a deep breath and first know that the CFI is a measure of your own subjective perception of changes over the last year--not an IQ test and not a test of your actual cognition. A better measure of how you are doing is the scores you will get back within a few days to a week on those card "games". If those are within +10 to -10 range, your cognition is considered "within normal limits".

I've taken the CFI and the CogState tests in APT WebStudy over a period of years and talked with the people who run the program. It is really meant only as a measure of how you feel and are doing over time, with repeated check-ins every three month. My guess is that you will find from the Cogitate scores that some tests were easier and others were harder. I had a terrible time and was convinced I had failed the first time I did the memory tests for cards--maybe because I've never been a card player for anything harder than Uno! But three months later I found I was able to concentrate and do better.

While it is important to validate that you may be aware of and concerned about, changes in your thinking or daily skills, the CFI scores when they were first developed were often higher than zero. Many people in their 60's at least report that some area or areas are more difficult than a year ago. It sounds like until you took the test, you weren't really thinking about yourself as having changed a lot. So your recent discovery may have made you super-aware of any minor glitches in your attention span or memory. An occasional word-finding, tip-of-the-tongue experience is incredibly common in people over the age of 50, because our brains just are a wee bit slower coming up with the right word, not because we are losing our vocabulary.

When used in clinical trials, like one I am in, it is always paired with a study partner who knows that person well and can answer the same questions about that person.. So if you have a partner or good friend, you may want to ask them about any changes they have seen. It's always possible that some stress in your life, even a lack of sleep or worries about family members has led to some anxiety or mild depression. Those factors were associated with higher scores in people taking the CFI even when they tested with normal cognitive scores.

A study about 10 years ago looked at what happened when people were told they had ApoE4. This was when researcher were first wondering if it was a good idea for people to learn their ApoE 4 status in clinical trials. What they found was that people who were ApoE 4 but didn't know it, did just as well on cognitive tests as people with ApoE 3/3 and were just as likely to say they had a good memory. But once they were told they had ApoE4, and that it carried a small (for one copy) increased risk of Alzheimer's in late life, they did worse on a test of memory that those with ApoE 3--even though both had done fine before.

Your sentence structure and use of vocabulary, and your ability to find this forum and figure out how to register and post (not always easy!) tells me your brain is great at new learning. I hope you tell us a bit more about how you are doing in areas of your life that you didn't score as worse than a year ago. And let us know when you hear the other scores.

We're here for you. At 72 with two copies of ApoE 4, I never let one test tell me how I am doing. Otherwise I'd panic when I draw pentagons like a 6 year old--which I have done for the last 66 years!

Nancy
4/4 and still an optimist!
Lyre Taylor
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Re: New and scared 3/4

Post by Lyre Taylor »

Sheilah wrote: Fri May 31, 2024 8:51 pm Hi - About a week ago I found out that I am 3/4. Been a little bit of a rollercoaster but I knew it was a possibility so have started making changes suggested here and elsewhere and had been kind of settling into this. Tonight I registered for the APT Webstudy and took the tests. My CFI was 8 and that has me really really scared since I read that ‘normal’ is 0. I know that the study is suppose to help measure things over time and I don’t have the rest of the results yet, but this is scaring me even more than the 3/4, maybe because it is making it seem more real. Would love to hear from anyone else who has gone through this phase and come out on the other side in a calmer, more hopeful state. Thank you all for being here.
Hello Sheila,
Welcome to this site! Thank you for sharing your situation with us. I want to commend you for making some lifestyle changes to support good brain health. I see Nancy has given you some excellent information, and I hope that has put your mind at ease. This community is such a great support system. We are a team, and as we navigate through life, we can lean on each other when needed. If you haven't already checked out apoe4.info, as a Support Team Intern I'm happy to share several tools & resources to help you get the most out of your experience here. The Primer is a detailed and informative resource written by a practicing M.D. with ApoE4/4. It includes information about the biochemistry of the ApoE4 gene and offers a variety of research-based prevention strategies.

Some helpful tips to navigate the site include the How-To Guide. It includes topics such as navigating the forum, private messaging, and searching. One great tip is using the quote (") button when replying to a post. Using the button will automatically alert the member of your response.

Wiki Main Page contains a wealth of information.

If you are interested in learning more about other members check out Our Stories.

Again, I am so glad you joined our forum. Please feel free to reach out anytime. We are always here for you.

Warmly,
Lyre
Sheilah
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Re: New and scared 3/4

Post by Sheilah »

Nancy and Lyre - Thank you both! I am 62 and have noticed some things are harder over the past year, which is how I ended up getting tested. That said, it’s also been an unusually stressful time (renovating a house and moving back after 13 mo in a rental, ovarian cancer concern (all ok) that led to full hysterectomy in December (all good there too, recovery mostly easy just long), my mom in the hospital and rehab 2x since December ending up with moving her out of her apartment and I to assisted living (she’s about 3 hours away) and increasing demands and stress in my already challenging full-time job. Thing are settling down now, getting back to regular exercise (with new motivation!), house is nearly all unpacked except my craft room, mom is settled, and work is still hard but I have amazing support. So, Nancy you are right that I am maybe more hyper aware right now of things I forget or don’t do. We’ll see how the rest of the test comes out (remembering it’s only a point in time).


The people and resources here are just fantastic and I so appreciate being welcomed to the community.💞
Sheilah
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Re: New and scared 3/4

Post by Sheilah »

Oh my! I added a year - I’m 61! Time flies but not that fast!!
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floramaria
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Re: New and scared 3/4

Post by floramaria »

:lol:
Sheilah wrote: Sat Jun 01, 2024 7:44 am Oh my! I added a year - I’m 61! Time flies but not that fast!!
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