Hi, I'm Lila, I'm 18 years old next month and I have very bad health anxiety.
I started spiraling a few weeks ago because I learned about the link between periodontal disease and Alzheimer's (I have periodontal disease on my lower front incisiors) and then I learned about the connection between APOE4 and Alzheimer's and really started freaking out.
I don't know if I have the gene, I have no family history of Alzheimer's that can be observed on either side of my family tree (but my grandfather was adopted, so that's something to consider), but I've heard that APOE4 is a risk factor for periodontal disease so I'm scared that I have one or two copies. I'm convinced that I'm going to forget everything by the time I'm 65. I don't want to forget everything, I love my family and friends and I love my life and who I am, and I want to be able to look back on it when I'm old and I don't want to die confused and scared.
Everything I've read has been so scary and discouraging. On one hand, not knowing my status is like a terrifying roll of the dice. I want kids when I'm older and I don't want to unknowingly pass this gene onto them. On the other hand, knowing would leave me to spiral into anxiety and depression. I just want to live free of this worry.
Finding this forum is comforting so I thought I'd share this and see if anyone has any comforting words for me.
APOE status unknown and too scared to check
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Re: APOE status unknown and too scared to check
Lilac wrote: ↑Wed Jul 31, 2024 6:44 pm Hi, I'm Lila, I'm 18 years old next month and I have very bad health anxiety.
I started spiraling a few weeks ago because I learned about the link between periodontal disease and Alzheimer's (I have periodontal disease on my lower front incisiors) and then I learned about the connection between APOE4 and Alzheimer's and really started freaking out.
I don't know if I have the gene, I have no family history of Alzheimer's that can be observed on either side of my family tree (but my grandfather was adopted, so that's something to consider), but I've heard that APOE4 is a risk factor for periodontal disease so I'm scared that I have one or two copies. I'm convinced that I'm going to forget everything by the time I'm 65. I don't want to forget everything, I love my family and friends and I love my life and who I am, and I want to be able to look back on it when I'm old and I don't want to die confused and scared.
Everything I've read has been so scary and discouraging. On one hand, not knowing my status is like a terrifying roll of the dice. I want kids when I'm older and I don't want to unknowingly pass this gene onto them. On the other hand, knowing would leave me to spiral into anxiety and depression. I just want to live free of this worry.
Finding this forum is comforting so I thought I'd share this and see if anyone has any comforting words for me.
Hi Lila,
As a Support Team Intern, I’d like to welcome you to the Forum. Thank you for sharing your story and your raw honesty. You have come to the right place to find a compassionate and supportive community, especially as you try to make sense of all the overwhelming information out there. This topic can certainly be frightening once you jump down the rabbit hole.
As you continue your exploration here on ApoE4.info, you will find that there is much that we can all do to lower our risk of developing Alzheimer's. The encouraging news is that making sustainable lifestyle changes in the areas that are researched to show prevention and mitigation of cognitive decline are also factors that reduce systemic inflammation, heart disease risk, cardiometabolic risk, and other chronic conditions and diseases. You have the power to enhance your ability to steer your ship away from cognitive decline and by doing so, also, any of these chronic conditions/diseases. That power starts with awareness. Being almost 18, you are presumably ahead of most at your age, and many older than you. With awareness and becoming informed, you can embark on empowering yourself to make the lifestyle changes that will steer the direction of your longterm health and wellbeing, well past 65!
The causes of Alzheimer’s are complex and still a work in progress. But it is often more than a single risk factor, such as periodontal disease. Having no known family history of Alzheimer’s is also encouraging. There are many known carriers of the ApoE4 gene that continue to thrive with vitality through their mature years, despite what is encoded in their genes. What that says is that even if you were a carrier, your genes are not your destiny.
If you haven’t already discovered the Primer , it's a great place to start as it 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 lots of useful information and links to articles for a deeper dive into specific topics.
If you are interested in learning more about other members check out Our Stories.
It sounds like you come from a place of so much love. Continue to revel in your relationships with your family and friends. If it brings you comfort, confide in those who will are willing to listen to your fears and encourage you to steer your ship. In the meantime, we are also here for you. Reach out anytime.
Warmly,
Helen
Helen
Functional Medicine Certified Health Coach
Functional Medicine Certified Health Coach
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- Contributor
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- Joined: Mon Jun 17, 2024 2:57 pm
Re: APOE status unknown and too scared to check
Welcome, Lila! I'm glad you found our little corner of the internet. Thinking about aging and the role genetics will play in that process is always tough. The dread is awful and paralyzing; I suspect it hits people with health anxiety—like you and me—especially hard.Lilac wrote: ↑Wed Jul 31, 2024 6:44 pm Hi, I'm Lila, I'm 18 years old next month and I have very bad health anxiety.
I started spiraling a few weeks ago because I learned about the link between periodontal disease and Alzheimer's (I have periodontal disease on my lower front incisiors) and then I learned about the connection between APOE4 and Alzheimer's and really started freaking out.
I don't know if I have the gene, I have no family history of Alzheimer's that can be observed on either side of my family tree (but my grandfather was adopted, so that's something to consider), but I've heard that APOE4 is a risk factor for periodontal disease so I'm scared that I have one or two copies. I'm convinced that I'm going to forget everything by the time I'm 65. I don't want to forget everything, I love my family and friends and I love my life and who I am, and I want to be able to look back on it when I'm old and I don't want to die confused and scared.
Everything I've read has been so scary and discouraging. On one hand, not knowing my status is like a terrifying roll of the dice. I want kids when I'm older and I don't want to unknowingly pass this gene onto them. On the other hand, knowing would leave me to spiral into anxiety and depression. I just want to live free of this worry.
Finding this forum is comforting so I thought I'd share this and see if anyone has any comforting words for me.
This might sound like counterintuitive advice on a forum that's primarily about testing for one particular genetic variant, but I highly recommend finding support for your health anxiety first. This can be with a loved one, a doctor, a genetic counsellor, a therapist, a spiritual leader, or another person you trust. Anxiety is a mental health issue first and foremost; it isn't strictly rational, and information won't make it go away. (An example from my own morning: I'm an APOE3/4 woman. You'd think my brain would be torturing me about Alzheimer's risk, but no! Today, it's decided to convince me that I'll definitely develop schizophrenia, even though I'm in my 30s and well beyond the typical age of onset, with 0 family history, and no symptoms. Anxiety is a jerk, is what I'm saying.)
We also have some really excellent resources to guide your conversations and decisions around discovering (or not discovering) your APOE status:
- Thinking About Testing raises a lot of points to consider, especially surrounding family. This seems like it aligns with your values and close ties to your loved ones. https://www.apoe4.info/thinking-about-testing/
- Gene Test or Not is a 4-question quiz about whether or not testing for APOE4 is the right decision for you. I found it especially helpful because it's APOE4-specific, but there are lots of general questionnaires and articles about genetic testing online too. https://genetestornot.org/
Re: APOE status unknown and too scared to check
Hi, Helen. This reply made me feel a lot better and less alone.HelenOwens wrote: ↑Wed Jul 31, 2024 8:33 pmLilac wrote: ↑Wed Jul 31, 2024 6:44 pm Hi, I'm Lila, I'm 18 years old next month and I have very bad health anxiety.
I started spiraling a few weeks ago because I learned about the link between periodontal disease and Alzheimer's (I have periodontal disease on my lower front incisiors) and then I learned about the connection between APOE4 and Alzheimer's and really started freaking out.
I don't know if I have the gene, I have no family history of Alzheimer's that can be observed on either side of my family tree (but my grandfather was adopted, so that's something to consider), but I've heard that APOE4 is a risk factor for periodontal disease so I'm scared that I have one or two copies. I'm convinced that I'm going to forget everything by the time I'm 65. I don't want to forget everything, I love my family and friends and I love my life and who I am, and I want to be able to look back on it when I'm old and I don't want to die confused and scared.
Everything I've read has been so scary and discouraging. On one hand, not knowing my status is like a terrifying roll of the dice. I want kids when I'm older and I don't want to unknowingly pass this gene onto them. On the other hand, knowing would leave me to spiral into anxiety and depression. I just want to live free of this worry.
Finding this forum is comforting so I thought I'd share this and see if anyone has any comforting words for me.
Hi Lila,
As a Support Team Intern, I’d like to welcome you to the Forum. Thank you for sharing your story and your raw honesty. You have come to the right place to find a compassionate and supportive community, especially as you try to make sense of all the overwhelming information out there. This topic can certainly be frightening once you jump down the rabbit hole.
As you continue your exploration here on ApoE4.info, you will find that there is much that we can all do to lower our risk of developing Alzheimer's. The encouraging news is that making sustainable lifestyle changes in the areas that are researched to show prevention and mitigation of cognitive decline are also factors that reduce systemic inflammation, heart disease risk, cardiometabolic risk, and other chronic conditions and diseases. You have the power to enhance your ability to steer your ship away from cognitive decline and by doing so, also, any of these chronic conditions/diseases. That power starts with awareness. Being almost 18, you are presumably ahead of most at your age, and many older than you. With awareness and becoming informed, you can embark on empowering yourself to make the lifestyle changes that will steer the direction of your longterm health and wellbeing, well past 65!
The causes of Alzheimer’s are complex and still a work in progress. But it is often more than a single risk factor, such as periodontal disease. Having no known family history of Alzheimer’s is also encouraging. There are many known carriers of the ApoE4 gene that continue to thrive with vitality through their mature years, despite what is encoded in their genes. What that says is that even if you were a carrier, your genes are not your destiny.
If you haven’t already discovered the Primer , it's a great place to start as it 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 lots of useful information and links to articles for a deeper dive into specific topics.
If you are interested in learning more about other members check out Our Stories.
It sounds like you come from a place of so much love. Continue to revel in your relationships with your family and friends. If it brings you comfort, confide in those who will are willing to listen to your fears and encourage you to steer your ship. In the meantime, we are also here for you. Reach out anytime.
Warmly,
Helen
I hope you don't mind if I bring up the paper I read which is causing me the most worry. https://seekingalpha.com/instablog/2079 ... thogenesis
As I wrote, I have periodontal disease. The author states that the only reason some APOE4 homozygotes never develop symptoms of dementia is because a lack of infection from P.gingivalis, a keystone bacteria in the disease I have. This makes me feel hopeless and as if there is nothing I can do to prevent Alzheimer's. I know it's only one source, but the theory is backed by Cortexyme, what I understand is a reputable drug company.
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- Contributor
- Posts: 89
- Joined: Thu Jan 11, 2024 1:23 pm
- Location: Massachusetts
Re: APOE status unknown and too scared to check
Hi Lila,Lilac wrote: ↑Thu Aug 01, 2024 1:01 pmHi, Helen. This reply made me feel a lot better and less alone.HelenOwens wrote: ↑Wed Jul 31, 2024 8:33 pmLilac wrote: ↑Wed Jul 31, 2024 6:44 pm Hi, I'm Lila, I'm 18 years old next month and I have very bad health anxiety.
I started spiraling a few weeks ago because I learned about the link between periodontal disease and Alzheimer's (I have periodontal disease on my lower front incisiors) and then I learned about the connection between APOE4 and Alzheimer's and really started freaking out.
I don't know if I have the gene, I have no family history of Alzheimer's that can be observed on either side of my family tree (but my grandfather was adopted, so that's something to consider), but I've heard that APOE4 is a risk factor for periodontal disease so I'm scared that I have one or two copies. I'm convinced that I'm going to forget everything by the time I'm 65. I don't want to forget everything, I love my family and friends and I love my life and who I am, and I want to be able to look back on it when I'm old and I don't want to die confused and scared.
Everything I've read has been so scary and discouraging. On one hand, not knowing my status is like a terrifying roll of the dice. I want kids when I'm older and I don't want to unknowingly pass this gene onto them. On the other hand, knowing would leave me to spiral into anxiety and depression. I just want to live free of this worry.
Finding this forum is comforting so I thought I'd share this and see if anyone has any comforting words for me.
Hi Lila,
As a Support Team Intern, I’d like to welcome you to the Forum. Thank you for sharing your story and your raw honesty. You have come to the right place to find a compassionate and supportive community, especially as you try to make sense of all the overwhelming information out there. This topic can certainly be frightening once you jump down the rabbit hole.
As you continue your exploration here on ApoE4.info, you will find that there is much that we can all do to lower our risk of developing Alzheimer's. The encouraging news is that making sustainable lifestyle changes in the areas that are researched to show prevention and mitigation of cognitive decline are also factors that reduce systemic inflammation, heart disease risk, cardiometabolic risk, and other chronic conditions and diseases. You have the power to enhance your ability to steer your ship away from cognitive decline and by doing so, also, any of these chronic conditions/diseases. That power starts with awareness. Being almost 18, you are presumably ahead of most at your age, and many older than you. With awareness and becoming informed, you can embark on empowering yourself to make the lifestyle changes that will steer the direction of your longterm health and wellbeing, well past 65!
The causes of Alzheimer’s are complex and still a work in progress. But it is often more than a single risk factor, such as periodontal disease. Having no known family history of Alzheimer’s is also encouraging. There are many known carriers of the ApoE4 gene that continue to thrive with vitality through their mature years, despite what is encoded in their genes. What that says is that even if you were a carrier, your genes are not your destiny.
If you haven’t already discovered the Primer , it's a great place to start as it 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 lots of useful information and links to articles for a deeper dive into specific topics.
If you are interested in learning more about other members check out Our Stories.
It sounds like you come from a place of so much love. Continue to revel in your relationships with your family and friends. If it brings you comfort, confide in those who will are willing to listen to your fears and encourage you to steer your ship. In the meantime, we are also here for you. Reach out anytime.
Warmly,
Helen
I hope you don't mind if I bring up the paper I read which is causing me the most worry. https://seekingalpha.com/instablog/2079 ... thogenesis
As I wrote, I have periodontal disease. The author states that the only reason some APOE4 homozygotes never develop symptoms of dementia is because a lack of infection from P.gingivalis, a keystone bacteria in the disease I have. This makes me feel hopeless and as if there is nothing I can do to prevent Alzheimer's. I know it's only one source, but the theory is backed by Cortexyme, what I understand is a reputable drug company.
Thank you for sharing the blog that is causing you distress. It can certainly be scary when you read about a correlation that seems to tie into something personally relevant to you, such as periodontal disease. However, it is a "theory," one of many out there, for a complex disease with complex causality. And, while I am not qualified to validate or refute this theory, I can say that you are more than this single risk factor; focusing on this fear blurs all the reasons why you may not be at any higher risk for AD. You already have things greatly in your favor from the little that I know of you - lack of family history and an awareness and power to steer your health from the very young age of 18.
I also understand that anxiety, especially if that is something that you struggle with, can contribute to hyper-focusing on something. Channeling your love for your life, family and friends, in order to proactively manage the lifestyle factors that MANY research CONTINUES to support as effective strategies to prevent and mitigate chronic diseases including cognitive decline may be more productive toward improving your chances of thwarting that outcome and continuing to live the life you love, if you can allow that. And, anxiety is the robber of joy. Consider, what does the future you aspire to look like and what are the steps you can take that will get you there?
As lana_banana suggested, you may find that seeking additional support to be beneficial if your health anxiety is a struggle. I am also hoping that one of our Support Team Leaders will chime in, as they may have some additional insight that you may find helpful or comforting.
Thinking of you,
Helen
Helen
Functional Medicine Certified Health Coach
Functional Medicine Certified Health Coach
Re: APOE status unknown and too scared to check
Hi Lila,Lilac wrote: ↑Thu Aug 01, 2024 1:01 pm Hi, Helen. This reply made me feel a lot better and less alone.
I hope you don't mind if I bring up the paper I read which is causing me the most worry. https://seekingalpha.com/instablog/2079 ... thogenesis
As I wrote, I have periodontal disease. The author states that the only reason some APOE4 homozygotes never develop symptoms of dementia is because a lack of infection from P.gingivalis, a keystone bacteria in the disease I have. This makes me feel hopeless and as if there is nothing I can do to prevent Alzheimer's. I know it's only one source, but the theory is backed by Cortexyme, what I understand is a reputable drug company.
Before I talk about Cortexyme, I just want to note that you are a smart, well-read, inquisitive person! You should know that some of the best-validated research shows that early life education and intellectual pursuits are STRONGLY associated with a happy late-life brain. Your brain is developing rich connections between neurons that researchers call "cognitive reserve" and "cognitive resilience".
I know something about cognitive reserve and resilience, and also individual risks being different than global statistics. I have two copies of ApoE 4, which should mean that at my age of 72, I would have a high chance of cognitive impairment, since people my age tend to have that at my age. But I get tested every three months as a participant in a clinical trial and do fine--sometimes much better than fine! I'm not a genius, and I draw like an 8 year old (and always have!) but like you, I was curious and wanted to find out for myself when I was your age. And I never stopped being curious--so I even went back to college at age 57 for another degree!
YET--I had tons of cavities as a child, due to inheriting my dad's thin tooth enamel and I have had periodontal disease for probably my entire adult life--even with brushing and flossing and seeing the dentist regularly. And most adults have SOME--but not severe--periodontal disease. This quote is from a 2024 article in Nature, one of the most respected peer-reviewed journals:
Defining Porphyromonas gingivalis strains associated with periodontal disease...Defining Porphyromonas gingivalis strains associated with periodontal disease.Periodontitis is among the most common infections in the United States, with an estimated prevalence of 42.2% for adults aged 30 years or older...Several characterization studies have examined the genetic diversity among P. gingivalis strains and their varying potency to cause periodontal diseases...Currently, there are 67 unique P. gingivalis genomes in the NCBI database.. [that]vary in.. virulence traits
So why do half of adults have periodontal disease, yet only about 10% of adults with no genetic risks (like my ApoE 4/4) develop any cognitive impairment before age 85 (which also happens to be the average lifespan for someone born in 1952)? Research suggests two reasons:
- People who start to have mild cognitive impairment often don't recognize it, and/or don't ask their doctor about it. But they also start not taking care of their teeth as well. So their gum disease get worse, they start losing teeth, getting systemic inflammation--not just a few lower teeth--and it becomes a vicious circle.
- Many adults my age and younger have other serious health issues: diabetes, obesity, high blood pressure, coronary artery disease, rheumatoid arthritis. ALL of those have been linked to increasing risk of both gum disease and cognitive impairment.
https://www.preprints.org/manuscript/20 ... al DiseaseOur analysis revealed significant molecular overlaps between periodontal disease and several systemic conditions, including cardiovascular diseases, diabetes mellitus, rheumatoid arthritis, and inflammatory bowel diseases
I just spent a week at the Alzheimer's Association's 2024 conference with 8000 other people (whew!) and hundreds of papers and 1000's of posters. I just checked and periodontal disease had ONE poster. But inflammation was a BIG topic--just not focused on teeth. Much more focused on things like metabolic syndrome, auto-immune diseases and LOTS of research on how to tweak the immune system to sometimes ramp up (a little inflammation to attack COVID can be a good thing) or down (to dial back hyperactive microglia.
The clear message I took away was: We're going to crack this inflammation issue in the next 10 years and have great ways to prevent it being a problem.
Lila, Cortexyme over-hyped their product in 2021 and in 2022 the FDA warned them about their results and they sold their company to another one called Quince. That company isn't doing ANY research on p-gingivalis--I think because the issue is back at the scientists taking a big view on whole-body inflammation.
Finally, a gentle question about health anxiety--do you have a sense of whether this is something you can talk to family about, or do they have anxiety around health also. My mom was only 10 when her mother died from a stroke at age 45. Unfortunately, she talked about that a lot when I was very small--so that by the time I was 9, I was petrified of turning 10. She didn't realize what she was doing and as I got older I realized my grandmother had 11 kids in 14 years, most at home, had untreated high blood pressure and kidney disease (and was born in 1881!) My hard-won advice is to learn some cognitive self-talk strategies: You have DECADES before you have to worry about this.
You have a 75 % chance of not having any risk genes (ApoE 3/3 is 75% of the US population) You have NO family history. If you can, talk with a counselor at school or college, or seek out an online licensed mental health person who can help you enjoy that wonderful brain of yours!
Warmly,
Nancy
4/4 and still an optimist!
Re: APOE status unknown and too scared to check
This comforted me to hear. Glad to hear that you're doing well at 72! I do ask a lot of questions and read a lot, most of the time books which benefits me, but sometimes I get lost in scientific papers and studies and while that can be interesting, it will often lead to anxiety spirals like the one I've been in for the past month.
I knew I had virtually nothing to worry about in the way of cognitive issues because I have a family history of dental issues (mother has advanced tooth decay from smoking and probable periodontal disease, father has almost no teeth left) but absolutely no traceable history of cognitive issues (all the women on my mother's side have lived into their 90s and were sharp as a tack until the day they died, bad teeth or not, and sadly my paternal grandparents drank themselves to death so there's no way of knowing). I've been told by my family that my brain likes to occupy itself with worry. Before Alzheimer's, it was Cushing's Disease, of which I also have no family history. Before Cushing's, Ewing's sarcoma (my older brother passed away from this last year). Before sarcoma, diabetes. Before diabetes, melanoma. So on and so forth. If it's not a disease, it's a relationship or a friendship I'm overthinking. Or school work or an audition or a choir performance. Or I'm worrying on someone else's behalf, I call it "hypochondria by proxy" when I "Dr. Google" a friend or a pet's signs and symptoms.
The reality is I read a lot, eat well, exercise (live theatre is a hell of a work out), and take diligent care of my teeth so I know I really have nothing to worry about but it's always reasurring to know that someone in similar circumstances to mine is doing well later in life!
I knew I had virtually nothing to worry about in the way of cognitive issues because I have a family history of dental issues (mother has advanced tooth decay from smoking and probable periodontal disease, father has almost no teeth left) but absolutely no traceable history of cognitive issues (all the women on my mother's side have lived into their 90s and were sharp as a tack until the day they died, bad teeth or not, and sadly my paternal grandparents drank themselves to death so there's no way of knowing). I've been told by my family that my brain likes to occupy itself with worry. Before Alzheimer's, it was Cushing's Disease, of which I also have no family history. Before Cushing's, Ewing's sarcoma (my older brother passed away from this last year). Before sarcoma, diabetes. Before diabetes, melanoma. So on and so forth. If it's not a disease, it's a relationship or a friendship I'm overthinking. Or school work or an audition or a choir performance. Or I'm worrying on someone else's behalf, I call it "hypochondria by proxy" when I "Dr. Google" a friend or a pet's signs and symptoms.
The reality is I read a lot, eat well, exercise (live theatre is a hell of a work out), and take diligent care of my teeth so I know I really have nothing to worry about but it's always reasurring to know that someone in similar circumstances to mine is doing well later in life!
Re: APOE status unknown and too scared to check
I don't think it is your brain alone that worries, and I don't think the brain worries because it likes to. We all worry. I think that our brains evolved to be alert to potential threats. We don't have to worry too much about being attacked by a tiger, so we worry to death about whatever captures our mind at the time.
Many people do a lot of work to develop an understanding that their thoughts (the mind) is different from their essential selves. Many people practice ways to quiet the mind or retrain neuropathways to focus on more helpful thoughts. I have found Insight Timer to be very helpful. $60 per year gets you access to all of the meditations, courses, talks, etc. My favorite is Dexter and Alessandrina. Alessandrina says that it doesn't take that long to create new neuropathways. It takes clear intention of what you want to create and practice. I hope this helps.
Re: APOE status unknown and too scared to check
Live theater is working your brain while on a high wire!! I did that in high school, just long enough to know I had no talent for it. But auditioning, getting into character, memorizing lines, hitting your marks on stage, singing--that brain work is probably why actors often are still going strong in their 80's or 90's!Lilac wrote: ↑Mon Aug 05, 2024 7:36 am...I do ask a lot of questions and read a lot, most of the time books which benefits me, but sometimes I get lost in scientific papers and studies and while that can be interesting, it will often lead to anxiety spirals like the one I've been in for the past month...
The reality is I read a lot, eat well, exercise (live theatre is a hell of a work out), and take diligent care of my teeth so I know I really have nothing to worry about but it's always reassuring to know that someone in similar circumstances to mine is doing well later in life!
If theatre isn't going to be a career for you, here's another suggestion: a career in science. I'm so sorry that your older brother developed Ewing's sarcoma and died from it last year. As I'm sure you know, it's a very rare disease, with only 200-250 cases in the U.S. each year and not inherited from parents. I used to work with families and kids affected by traumatic brain injuries, and some with pediatric cancers. Those families had a tragedy no family ever deserves, yet often they showed such courage and love in the face of grief. I have known siblings of those children who went on to be pediatric nurses, or hospice care coordinators, or biostatisticians working on first cancer and then Alzheimer's. Sometimes they found meaning in volunteering for summer camps for kids with cancer or for the siblings of kids with cancer. They all continued to be wonderful human beings. So know that you, too, have a lifetime ahead of you to be creative and curious and wonderful.
Nancy
4/4 and still an optimist!
Re: APOE status unknown and too scared to check
Hello again! I know this seems a bit out of the blue, but I'd really like to thank you again, Nancy. This reply of yours really got me out of a real anxiety funk a bit ago and everytime I circle back to this topic, I come back to this and always come away feeling better.NF52 wrote: ↑Mon Aug 05, 2024 7:15 amHi Lila,Lilac wrote: ↑Thu Aug 01, 2024 1:01 pm Hi, Helen. This reply made me feel a lot better and less alone.
I hope you don't mind if I bring up the paper I read which is causing me the most worry. https://seekingalpha.com/instablog/2079 ... thogenesis
As I wrote, I have periodontal disease. The author states that the only reason some APOE4 homozygotes never develop symptoms of dementia is because a lack of infection from P.gingivalis, a keystone bacteria in the disease I have. This makes me feel hopeless and as if there is nothing I can do to prevent Alzheimer's. I know it's only one source, but the theory is backed by Cortexyme, what I understand is a reputable drug company.
Before I talk about Cortexyme, I just want to note that you are a smart, well-read, inquisitive person! You should know that some of the best-validated research shows that early life education and intellectual pursuits are STRONGLY associated with a happy late-life brain. Your brain is developing rich connections between neurons that researchers call "cognitive reserve" and "cognitive resilience".
I know something about cognitive reserve and resilience, and also individual risks being different than global statistics. I have two copies of ApoE 4, which should mean that at my age of 72, I would have a high chance of cognitive impairment, since people my age tend to have that at my age. But I get tested every three months as a participant in a clinical trial and do fine--sometimes much better than fine! I'm not a genius, and I draw like an 8 year old (and always have!) but like you, I was curious and wanted to find out for myself when I was your age. And I never stopped being curious--so I even went back to college at age 57 for another degree!
YET--I had tons of cavities as a child, due to inheriting my dad's thin tooth enamel and I have had periodontal disease for probably my entire adult life--even with brushing and flossing and seeing the dentist regularly. And most adults have SOME--but not severe--periodontal disease. This quote is from a 2024 article in Nature, one of the most respected peer-reviewed journals:Defining Porphyromonas gingivalis strains associated with periodontal disease...Defining Porphyromonas gingivalis strains associated with periodontal disease.Periodontitis is among the most common infections in the United States, with an estimated prevalence of 42.2% for adults aged 30 years or older...Several characterization studies have examined the genetic diversity among P. gingivalis strains and their varying potency to cause periodontal diseases...Currently, there are 67 unique P. gingivalis genomes in the NCBI database.. [that]vary in.. virulence traits
So why do half of adults have periodontal disease, yet only about 10% of adults with no genetic risks (like my ApoE 4/4) develop any cognitive impairment before age 85 (which also happens to be the average lifespan for someone born in 1952)? Research suggests two reasons:
- People who start to have mild cognitive impairment often don't recognize it, and/or don't ask their doctor about it. But they also start not taking care of their teeth as well. So their gum disease get worse, they start losing teeth, getting systemic inflammation--not just a few lower teeth--and it becomes a vicious circle.
Here's what one July 2024study that is so new it's in Pre-Print found:
- Many adults my age and younger have other serious health issues: diabetes, obesity, high blood pressure, coronary artery disease, rheumatoid arthritis. ALL of those have been linked to increasing risk of both gum disease and cognitive impairment.
https://www.preprints.org/manuscript/20 ... al DiseaseOur analysis revealed significant molecular overlaps between periodontal disease and several systemic conditions, including cardiovascular diseases, diabetes mellitus, rheumatoid arthritis, and inflammatory bowel diseases
I just spent a week at the Alzheimer's Association's 2024 conference with 8000 other people (whew!) and hundreds of papers and 1000's of posters. I just checked and periodontal disease had ONE poster. But inflammation was a BIG topic--just not focused on teeth. Much more focused on things like metabolic syndrome, auto-immune diseases and LOTS of research on how to tweak the immune system to sometimes ramp up (a little inflammation to attack COVID can be a good thing) or down (to dial back hyperactive microglia.
The clear message I took away was: We're going to crack this inflammation issue in the next 10 years and have great ways to prevent it being a problem.
Lila, Cortexyme over-hyped their product in 2021 and in 2022 the FDA warned them about their results and they sold their company to another one called Quince. That company isn't doing ANY research on p-gingivalis--I think because the issue is back at the scientists taking a big view on whole-body inflammation.
Finally, a gentle question about health anxiety--do you have a sense of whether this is something you can talk to family about, or do they have anxiety around health also. My mom was only 10 when her mother died from a stroke at age 45. Unfortunately, she talked about that a lot when I was very small--so that by the time I was 9, I was petrified of turning 10. She didn't realize what she was doing and as I got older I realized my grandmother had 11 kids in 14 years, most at home, had untreated high blood pressure and kidney disease (and was born in 1881!) My hard-won advice is to learn some cognitive self-talk strategies: You have DECADES before you have to worry about this.
You have a 75 % chance of not having any risk genes (ApoE 3/3 is 75% of the US population) You have NO family history. If you can, talk with a counselor at school or college, or seek out an online licensed mental health person who can help you enjoy that wonderful brain of yours!
Warmly,
Nancy
I thought recently how the article about Cortexyme (or Quince's, not really sure how to refer to it) study and how the author said that virtually 100% of Alzheimer's patients have an active P. Gingivalis infection and wondered what the people here thought about the validity of that statement because it just seems blatantly incorrect and doesn't sit right with me. I know elderly people who have gotten Alzheimer's and took perfectly fine care of their teeth, and elderly people who didn't that are just as sharp as ever!
The sentiment that most worried me was how the author said that PG invades your brain over "several decades", as I have had problems with my gums since I was about 8 and and 18 I still don't have sufficient funds to get it properly taken care of, was never taken to the dentist, and won't be able to for quite a while. It had me thinking I had sealed my fate at an early age and I'd start losing my memories by my mid-sixties! And that fear is still present, but lesser so.
I know that because I'm young, I take as good care of my teeth as I can at home, my oral health has greatly improved, and that I will see a dentist as soon as I can afford the care, I'll be just fine.