New Member Intro - former biotech exec 4/4, updates from 1st neurologist meeting 7/10/24

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
June
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New Member Intro - former biotech exec 4/4, updates from 1st neurologist meeting 7/10/24

Post by June »

Greetings all!
First of all, I truly appreciate this invaluable forum and warm community for all 4/4 and caregivers, families to learn, share, and support one another! I can imagine the amount of work that has gone into building and maintaining the site, so I want to express my deep gratitude to you all...

I'm June, 58, 4/4 (found out from 23andme in 2023), my young adult son is 3/4. East Asian origin, came to the States for graduate school, now live in California. I have no family history of AD, mom had coronary heart disease for years and passed in 2012 at 74 from stroke (which I think E4 contributed to). Dad is 86, mentally sharp, though he recently forgot his cell# and where he kept his house keys - alarming to him and me. I urged him to see a neurologist and get tested for cognitive functions. He and my sister have not done tests to find out ApoE genotype yet, but my dad is at least a E4 carrier. My sister has 75% chance of E4 carrier if mom and dad each has one E4.

My background was in medicine, biomedical research, and biotech business before pursuing something artistic over ten years ago. I have a solid understanding of the drug discovery and development process and have done a lot of reading on AD-related research, drug development, diagnostics, diet, supplements, lifestyle modifications, etc. I look forward to sharing what I find in AD research, clinical trials, diagnostics, etc.

What compelled me to find and join this group was reading the bombshell Nature Medicine 5/6/24 publication APOE4 homozygosity is a new genetic form of Alzheimer’s disease
Prior to that, 4/4 was just a high risk factor, afterwards, it was a shock and devastation. I felt doomed... After intensive reading and research and connecting with other E4/4 communities, and learning about promising prevention and diet, lifestyle changes that have shown positive results, my initial traumatic response has subsided. Now I firmly believe that if we are vigilant about our own health and follow solid, proven (sometimes promising) beneficial diet and lifestyle practices, we can hope to prevent/delay the onset of AD, and live a productive, happy life. With active new Rx and other treatment modalities and more sensitive Dx being developed, we are fortunate to live at a time when AD could ultimately become a chronic, manageable disease in our/our children's lifetime. Glad to hear examples of 4/4's doing well into their late 70's and 80's without AD!

I find this group such an amazing community with rich, valuable info and active engagement/support. I look forward to learning and sharing with you, supporting one another along the way... Thank you!
---------
June 4/4 yet hopeful
Former biotech executive
Last edited by June on Fri Jul 12, 2024 12:19 am, edited 3 times in total.
June 4/4 yet hopeful
Former biotech executive
JulieMorris
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Re: New Member Intro ; ),

Post by JulieMorris »

June wrote: Tue Jun 11, 2024 12:17 am Greetings all!
First of all, I truly appreciate this invaluable forum and warm community for all 4/4 and caregivers, families to learn, share, and support one another! I can imagine the amount of work that has gone into building and maintaining the site, so I want to express my deep gratitude to you all...

I'm June, 58, 4/4 (found out from 23andme in 2023), my young adult son is 3/4. East Asian origin, came to the States for graduate school, now live in California. I have no family history of AD, mom had coronary heart disease for years and passed in 2012 at 74 from stroke (which I think E4 contributed to). Dad is 86, mentally sharp, though he recently forgot his cell# and where he kept his house keys - alarming to him and me. I urged him to see a neurologist and get tested for cognitive functions. He and my sister have not done tests to find out ApoE genotype yet, but my dad is at least a E4 carrier. My sister has 75% chance of E4 carrier if mom and dad each has one E4.

My background was in medicine, biomedical research, and biotech business before pursuing something artistic over ten years ago. I have a solid understanding of the drug discovery and development process and have done a lot of reading on AD-related research, drug development, diagnostics, diet, supplements, lifestyle modifications, etc. I look forward to sharing what I find in AD research, clinical trials, diagnostics, etc.

What compelled me to find and join this group was reading the bombshell Nature Medicine 5/6/24 publication APOE4 homozygosity is a new genetic form of Alzheimer’s disease
Prior to that, 4/4 was just a high risk factor, afterwards, it was a shock and devastation. I felt doomed... After intensive reading and research and connecting with other E4/4 communities, and learning about promising prevention and diet, lifestyle changes that have shown positive results, my initial traumatic response has subsided. Now I firmly believe that if we are vigilant about our own health and follow solid, proven (sometimes promising) beneficial diet and lifestyle practices, we can hope to prevent/delay the onset of AD, and live a productive, happy life. With active new Rx and other treatment modalities and more sensitive Dx being developed, we are fortunate to live at a time when AD could ultimately become a chronic, manageable disease in our/our children's lifetime. Glad to hear examples of 4/4's doing well into their late 70's and 80's without AD!

I find this group such an amazing community with rich, valuable info and active engagement/support. I look forward to learning and sharing with you, supporting one another along the way... Thank you!
---------
June 4/4 yet hopeful
Hi June -
Hello! I'm a support team intern, and I'd like to welcome you to this site! You are right in that you have found a very supportive community here. We welcome the love of learning and wealth of background knowledge that you will bring to this group. Please do feel free to share what you find in regards to research, trials, etc., and then others will join in to discuss the information. This site includes medical professionals and scientists, like yourself, as well as patients, caregivers, and people learning about brain health.

The Nature Medicine article affected many people. Have you read Nancy's response here? Nature
There was much discussion following the release of that article on this site. If you'd like to add to that thread, we would welcome your input.

Since you're new to the site, you might want to take a look at our Primer. It is an incredible resource of information about the biochemistry of ApoE4. It offers researched-based prevention strategies and was written by a practicing M.D. with ApoE4. Do not become overwhelmed with all the information. Sometimes it is best to slowly read through it, decide which section resonates with you, and focus on that area first.

The How-To Guide will help you learn how to navigate this site. It includes topics such as navigating the forum, private messaging, and searching.

You can find other members' experiences in Our Stories. Sometimes reading the stories of others helps us realize that we are not alone. Feel free to share more of your story there, if you like.

I'm so glad you have joined us on this site, and appreciate you sharing part of your story. Please feel free to reach out anytime with questions or if you just need support. You are not alone. We are here for you.
PhD in Speech-Language Pathology
Functional Medicine Certified Health Coach
Interested in all things brain-related
June
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Re: New Member Intro ; ),

Post by June »

JulieMorris wrote: Tue Jun 11, 2024 8:05 am Hi June -
----

The Nature Medicine article affected many people. Have you read Nancy's response here? Nature
There was much discussion following the release of that article on this site. If you'd like to add to that thread, we would welcome your input.

....

You can find other members' experiences in Our Stories. Sometimes reading the stories of others helps us realize that we are not alone. Feel free to share more of your story there, if you like.

I'm so glad you have joined us on this site, and appreciate you sharing part of your story. Please feel free to reach out anytime with questions or if you just need support. You are not alone. We are here for you.
Thanks JulieMorris for your warm welcome, and sharing Nancy's informative response to the Nature Medicine article. I read others' response too, very helpful! Look forward to sharing and learning together...
---------
June 4/4 yet hopeful
June 4/4 yet hopeful
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Re: New Member Intro ; ),

Post by TCHC »

June wrote: Tue Jun 11, 2024 12:17 am Greetings all!
First of all, I truly appreciate this invaluable forum and warm community for all 4/4 and caregivers, families to learn, share, and support one another! I can imagine the amount of work that has gone into building and maintaining the site, so I want to express my deep gratitude to you all...

I'm June, 58, 4/4 (found out from 23andme in 2023), my young adult son is 3/4. East Asian origin, came to the States for graduate school, now live in California. I have no family history of AD, mom had coronary heart disease for years and passed in 2012 at 74 from stroke (which I think E4 contributed to). Dad is 86, mentally sharp, though he recently forgot his cell# and where he kept his house keys - alarming to him and me. I urged him to see a neurologist and get tested for cognitive functions. He and my sister have not done tests to find out ApoE genotype yet, but my dad is at least a E4 carrier. My sister has 75% chance of E4 carrier if mom and dad each has one E4.

My background was in medicine, biomedical research, and biotech business before pursuing something artistic over ten years ago. I have a solid understanding of the drug discovery and development process and have done a lot of reading on AD-related research, drug development, diagnostics, diet, supplements, lifestyle modifications, etc. I look forward to sharing what I find in AD research, clinical trials, diagnostics, etc.

What compelled me to find and join this group was reading the bombshell Nature Medicine 5/6/24 publication APOE4 homozygosity is a new genetic form of Alzheimer’s disease
Prior to that, 4/4 was just a high risk factor, afterwards, it was a shock and devastation. I felt doomed... After intensive reading and research and connecting with other E4/4 communities, and learning about promising prevention and diet, lifestyle changes that have shown positive results, my initial traumatic response has subsided. Now I firmly believe that if we are vigilant about our own health and follow solid, proven (sometimes promising) beneficial diet and lifestyle practices, we can hope to prevent/delay the onset of AD, and live a productive, happy life. With active new Rx and other treatment modalities and more sensitive Dx being developed, we are fortunate to live at a time when AD could ultimately become a chronic, manageable disease in our/our children's lifetime. Glad to hear examples of 4/4's doing well into their late 70's and 80's without AD!

I find this group such an amazing community with rich, valuable info and active engagement/support. I look forward to learning and sharing with you, supporting one another along the way... Thank you!
---------
June 4/4 yet hopeful
Hi June, I just wanted to say, Welcome!
I know the new paper was shocking, but you've already seen some reactions to that, so I think we have to take it in perspective - it's just one paper vs the experience of lots of people on this site.
I think it's amazing to have you on this site with your medical background.
I'm looking forward to hearing more from you, not just the medical stuff, do let us know how you're getting on with the diet and lifestyle too.
Lindsey
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June
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Re: New Member Intro ; ),

Post by June »

TCHC wrote: Fri Jun 14, 2024 1:44 am
June wrote: Tue Jun 11, 2024 12:17 am Greetings all!
.....

I'm June, 58, 4/4 (found out from 23andme in 2023), my young adult son is 3/4. East Asian origin, came to the States for graduate school, now live in California. I have no family history of AD, mom had coronary heart disease for years and passed in 2012 at 74 from stroke (which I think E4 contributed to). Dad is 86, mentally sharp, though he recently forgot his cell# and where he kept his house keys - alarming to him and me. I urged him to see a neurologist and get tested for cognitive functions. He and my sister have not done tests to find out ApoE genotype yet, but my dad is at least a E4 carrier. My sister has 75% chance of E4 carrier if mom and dad each has one E4.

My background was in medicine, biomedical research, and biotech business before pursuing something artistic over ten years ago. I have a solid understanding of the drug discovery and development process and have done a lot of reading on AD-related research, drug development, diagnostics, diet, supplements, lifestyle modifications, etc. I look forward to sharing what I find in AD research, clinical trials, diagnostics, etc.

....
---------
June 4/4 yet hopeful
Hi June, I just wanted to say, Welcome!
I know the new paper was shocking, but you've already seen some reactions to that, so I think we have to take it in perspective - it's just one paper vs the experience of lots of people on this site.
I think it's amazing to have you on this site with your medical background.
I'm looking forward to hearing more from you, not just the medical stuff, do let us know how you're getting on with the diet and lifestyle too.
Lindsey
Hi Lindsey - thank you for your kind note and warm welcome!

You're right about perspective re Nature Medicine 5/6/24 paper. I don't know if this 5/30/24 Neurology Today article with a different take on the Nature piece has been shared here, but I find it enlightening and hopeful:

Research Describing APOE4 Homozygosity as Distinct Form of Alzheimer's Causes Debate

Thanks for asking about how I'm getting on with diet and lifestyle, I'm happy to share more here.

I have been reasonably healthy and walk daily, but did have higher LDL (114 - 132) in the past 2 years, and A1c at 5.6 in 2023 and even 5.7 once Jan 2022 but I didn't notice then. I was highly motivated to improve my blood glucose and LDL after seeing lab results - met a dietitian and completely changed my diet right away starting July 2023.

Also, after reading Dr Peter Attia's post about Continuous glucose monitoring to improve health in non-diabetics
I was curious to see mine, and requested my PCP to prescribe a CGM (continuous glucose monitor), knowing that I might not get approval as a non-diabetic. To my surprise, it got approved (possibly because my A1c at 5.7 in 2022 made me prediabetic once)! I wore the FreeStyle Libre 3 CGM sensor (Abbott) for about 10 weeks. Wow, I've learned so much about how my body reacts to different food in terms of blood glucose and how to modify my diet to keep it within range. I highly recommend it for E4 carriers who are concerned about glucose levels/ or are prediabetic.

My dietary changes:
- Eliminated all desserts and refined carbs (I used to like desserts a lot and often had rice or bread)
- Increased quantity and variety of non-starchy vegetables (broccoli, celery, carrot, tomato, lettuce, chive, turnip, spinach, green peas, asparagus)
- Moderate fruits (blueberry, blackberry, strawberry, orange, apple, mango mostly)
- Now I eat salad mix daily with 1 tablespoon of EVOO, blueberries, nuts
- Increased salmon consumption (~1 lb weekly)
- Other proteins: eggs, nuts, beans, tofu, humus, shrimp, occasional beef, lamb, pork or chicken
- Reduced whole grains consumption too when I saw my CGM # spike when I ate even a small serving of steel cut oats

The drastic change in diet was not too hard fortunately. I used to eat sweet snacks, now I eat nuts, cheese, and fresh fruits for snacks. I would occasionally eat a tiny bite of dessert at certain social gatherings or dining out.

Very Happy to share that as of 4/22/24, my A1c dropped to 5.5 for the first time, and LDL dropped to 99, APO B at 80 mg/dL (<90 desirable), so all back to NORMAL range after diligent efforts! 8-)

I'll do another post about supplements and lifestyle changes next time
June 4/4 yet hopeful
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Re: New Member Intro - former biotech exec 4/4

Post by TCHC »

Hi June

That's so good to hear how well you're doing.
For anyone else reading this, if you can't get the Freestyle Libre on prescription, you can now get it in the UK and US just by paying for it.
As June says here, it is really enlightening - there are some foods I would have thought were OK, that spike my sugar and some that I'd have thought a bit naughty that are fine. Experimenting with food combining to bring the GL down or even mild exercise after food (eg a short brisk walk) can help too. I'd recommend it to anyone, as we're all different, so there's lots to learn.

Lindsey
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Re: New Member Intro ; ),

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June wrote: Fri Jun 14, 2024 7:13 pm I highly recommend it for E4 carriers who are concerned about glucose levels/ or are prediabetic.
Very Happy to share that as of 4/22/24, my A1c dropped to 5.5 for the first time, and LDL dropped to 99, APO B at 80 mg/dL (<90 desirable), so all back to NORMAL range after diligent efforts! 8-)
Very good news! You may be aware that those with east asian genetics may not deposit subcutaneous fat as much and therefore be prone to higher levels of visceral fat at lower BMI's than caucasians. Your lifestyle changes should help this.

On CGM's for non diabetics, Mark Cucuzzella MD gave a talk at a conference a few years ago. One of the things he highlights, especially with the Abbott models (& I've experienced this) is that their data can be really off during the first day or so after applying the sensor.
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Re: New Member Intro ; ),

Post by June »

Tincup wrote: Sat Jun 15, 2024 5:25 am
June wrote: Fri Jun 14, 2024 7:13 pm I highly recommend it for E4 carriers who are concerned about glucose levels/ or are prediabetic.
Very Happy to share that as of 4/22/24, my A1c dropped to 5.5 for the first time, and LDL dropped to 99, APO B at 80 mg/dL (<90 desirable), so all back to NORMAL range after diligent efforts! 8-)
Very good news! You may be aware that those with east asian genetics may not deposit subcutaneous fat as much and therefore be prone to higher levels of visceral fat at lower BMI's than caucasians. Your lifestyle changes should help this.

On CGM's for non diabetics, Mark Cucuzzella MD gave a talk at a conference a few years ago. One of the things he highlights, especially with the Abbott models (& I've experienced this) is that their data can be really off during the first day or so after applying the sensor.
Thanks Tincup, good point about East Asian genetics and visceral fat.

Thanks for linking Dr Mark Cucuzzella video, my experience with the Abbott model (FreeStyle Libre 3) is that the data seemed off (higher) towards the last day or two. One time I drew some blood when replacing the sensor, and the data seemed significantly higher than usual for the entire 2 weeks even when my diet was about the same, I was a bit worried. However, as soon as I replaced with a new sensor, everything was back to normal!

That's why I feel it's important to get a real lab test of A1c after 3 months so you know for sure, given inherent CGM device inaccuracies.
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Re: New Member Intro ; ),

Post by Tincup »

June wrote: Sun Jun 16, 2024 4:56 pm That's why I feel it's important to get a real lab test of A1c after 3 months so you know for sure, given inherent CGM device inaccuracies.
And even A1C can have pitfalls. Here is a Chris Kresser response as to why A1C can be unreliable.
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Re: New Member Intro - former biotech exec 4/4

Post by June »

TCHC wrote: Sat Jun 15, 2024 2:04 am Hi June

That's so good to hear how well you're doing.
For anyone else reading this, if you can't get the Freestyle Libre on prescription, you can now get it in the UK and US just by paying for it.
As June says here, it is really enlightening - there are some foods I would have thought were OK, that spike my sugar and some that I'd have thought a bit naughty that are fine. Experimenting with food combining to bring the GL down or even mild exercise after food (eg a short brisk walk) can help too. I'd recommend it to anyone, as we're all different, so there's lots to learn.

Lindsey
Thank you Lindsey! And like you, I find a brisk walk after a meal tends to bring down my glucose right away and within range. In fact, whenever I see my # go above 140 threshold on the app after a meal, I put on my sneakers and go for a walk :lol: It works every time!

Abbott's Freestyle Libre 3 is the most popular CGM from what I read. The sensor sends glucose data to your smart phone app every minute, each sensor is good for 14 days, and you replace it with a new sensor (refills) after 14 days.

Another solid popular CGM brand is "dexcom" (endorsed by Dr Peter Attia) which recently got FDA approval for a CGM over the counter with no prescription needed, branded "Stelo" that will be launched this summer, according to its website:

Introducing Stelo:
the first FDA-cleared glucose biosensor available without a prescription


I personally think it's worthwhile to try a CGM for at least 14 days even if one is not diabetic, to know your individual glucose metabolism and how your body reacts to different kinds of food, so you can modify accordingly in real time.

Cheers,
June 4/4 yet hopeful
Former biotech executive
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