New from Canada

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
Post Reply
Lebcar
New User
New User
Posts: 1
Joined: Wed Sep 14, 2022 9:50 am

New from Canada

Post by Lebcar »

Hey everyone
Just got 23andme results back and raw data from prometheus I have apoe3/4 and according to prometheus 12 bad and not set related genes all under 20% frequency and maximum magnitudes for all. Also many genes associated with higher than normal risk for coronary artery diseases. I can't say I'm suprised but having a hard time processing the info and dont really know what to do about it. My family doctor does not approve of at home dna tests. I have a strong maternal history of AD. My grandmother was diagnosed at 66 but had symptoms for atleast 5 years prior. Passed away from heart and alzheimer's complications at 70.
My mother was recently diagnosed last year at the age of 67, she also had symptoms for the last few years but would not get tested. Doctors have said its an agressive form and that is all i know. She will not talk about it. My grandmother on my fathers side died of a heart attack at the age of 70 otherwise healthy as far as we knew. Father had a massive heat attack at the age of 56. He had to have a quadruple bypass surgery because of all 4 blocked arteries. He is still with us and is now 68 :). I am 46 years old and have not taken the best care of myself. I was a smoker for 30 plus years before I quit 3 years ago. I have always been overweight around the 200 lbs mark and now have high blook pressure. I am also legally blind from a hereditary degenerative eye condition that is gonna lead me to blindness sooner than later. I have known since I was 14 that I would be blind someday. Sorry for long post I just don't really know where to start. I feel like it may be too late to reverse the damage. I know diet and exercise is key just trying to process all this right now and hopefully be steered in the right direction. I am grateful I found thia group. Xx
Alexia C
Support Team
Support Team
Posts: 94
Joined: Tue Jul 05, 2022 3:20 pm

Re: New from Canada

Post by Alexia C »

Lebcar wrote: Wed Sep 14, 2022 10:38 am Hey everyone
Just got 23andme results back and raw data from prometheus I have apoe3/4 and according to prometheus 12 bad and not set related genes all under 20% frequency and maximum magnitudes for all. Also many genes associated with higher than normal risk for coronary artery diseases. I can't say I'm suprised but having a hard time processing the info and dont really know what to do about it. My family doctor does not approve of at home dna tests. I have a strong maternal history of AD. My grandmother was diagnosed at 66 but had symptoms for atleast 5 years prior. Passed away from heart and alzheimer's complications at 70.
My mother was recently diagnosed last year at the age of 67, she also had symptoms for the last few years but would not get tested. Doctors have said its an agressive form and that is all i know. She will not talk about it. My grandmother on my fathers side died of a heart attack at the age of 70 otherwise healthy as far as we knew. Father had a massive heat attack at the age of 56. He had to have a quadruple bypass surgery because of all 4 blocked arteries. He is still with us and is now 68 :). I am 46 years old and have not taken the best care of myself. I was a smoker for 30 plus years before I quit 3 years ago. I have always been overweight around the 200 lbs mark and now have high blook pressure. I am also legally blind from a hereditary degenerative eye condition that is gonna lead me to blindness sooner than later. I have known since I was 14 that I would be blind someday. Sorry for long post I just don't really know where to start. I feel like it may be too late to reverse the damage. I know diet and exercise is key just trying to process all this right now and hopefully be steered in the right direction. I am grateful I found thia group. Xx
Hello Lebcar and Welcome!
I am so glad you found us and hopefully we can provide some support and guidance. Thank you for sharing your health and family journey with us. It is never too late to start and 'reverse the damage' as you mention. Just being aware that diet and exercise is key is a huge step. Taking tiny steps everyday by adding more movement and being mindful of your nutrition intake will have a positive impact in your health as you age. I am certain with your curiosity to learn more about AD and your interest in making better choices you will be moving in the right direction. I am sure others will be providing you with more feedback.

As a welcome intern, I would like to point out some links/resources that might be helpful as you explore the site further. The Primer includes researched-based prevention strategies. It has been written by Stavia, a practicing M.D. with ApoE4/4.

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.

If you are interested in learning more about other members check out Our Stories. You might find other members with experiences similar to yours that can help to steer you in the right direction.

Again, I am so glad you joined our forum and hope you find the support you need. I look forward to hearing from you in the future.

Best,

Alexia
Functional Medicine Certified Health Coach
NF52
Support Team
Support Team
Posts: 2772
Joined: Tue Oct 25, 2016 9:41 am
Location: Eastern U.S.

Re: New from Canada

Post by NF52 »

Lebcar wrote: Wed Sep 14, 2022 10:38 am Hey everyone
Just got 23andme results back and raw data from prometheus I have apoe3/4 and according to prometheus 12 bad and not set related genes all under 20% frequency and maximum magnitudes for all. Also many genes associated with higher than normal risk for coronary artery diseases. I can't say I'm suprised but having a hard time processing the info and dont really know what to do about it. My family doctor does not approve of at home dna tests. I have a strong maternal history of AD. My grandmother was diagnosed at 66 but had symptoms for atleast 5 years prior. Passed away from heart and alzheimer's complications at 70.
My mother was recently diagnosed last year at the age of 67, she also had symptoms for the last few years but would not get tested. Doctors have said its an agressive form and that is all i know. She will not talk about it. My grandmother on my fathers side died of a heart attack at the age of 70 otherwise healthy as far as we knew. Father had a massive heat attack at the age of 56. He had to have a quadruple bypass surgery because of all 4 blocked arteries. He is still with us and is now 68 :). I am 46 years old and have not taken the best care of myself. I was a smoker for 30 plus years before I quit 3 years ago. I have always been overweight around the 200 lbs mark and now have high blook pressure. I am also legally blind from a hereditary degenerative eye condition that is gonna lead me to blindness sooner than later. I have known since I was 14 that I would be blind someday. Sorry for long post I just don't really know where to start. I feel like it may be too late to reverse the damage. I know diet and exercise is key just trying to process all this right now and hopefully be steered in the right direction. I am grateful I found thia group. Xx
Welcome Lebcar,

I am so sorry that you have had so many challenges to face. You are a person with incredible strengths! You have given up smoking and nicotine, which is an incredibly addictive drug, and you have found ways to navigate life (literally) through school and adulthood while legally blind. I'm guessing that you provide much-valued emotional support to both of your parents, even if your mom is not willing or able to talk about her current cognitive issues.
We all bring some "baggage" to the realization that we might want to change our direction. At your age I was obese--a word I didn't want to believe because it wasn't how I saw myself, but I was also working long hours in a stressful job, dealing with my own mother's complicated grief from the death of my dad at age 67 with the same heart issues your dad has had, and seeing my mother's older siblings develop cognitive issues in their 70's. And yet, more than 20 years later, I have slowly lost weight, enjoy time outside, and find it much easier to put my needs front and center.

That's my main advice for you: Become your own best advocate.
Don't worry about your doctor's dismissal of your DNA results, but don't worry too much over all those minor genes that your report showed.
Do advocate for your heart health. You have a VERY strong history of early-onset heart disease, which may have been evident in your dad for a decade or more before his first heart attack. Depending on what the Canadian health system allows, here's what I would be asking:
An advanced lipid blood test: It's possible that one cause of the heart disease on your dad's side is hypercholesteremia (very high cholesterol from a faulty gene). If that's the case, there are very effective drugs to reduce that, which diet and exercise may not by themselves.
A blood test for Lp(a): This is a lipoprotein that is different than regular "cholesterol" and is mostly inherited. In other words, if you have a high Lp(a), one of your parents probably did also, and may have had heart disease. If you have a low Lp(a), it's not likely to ever get much higher, even if your LDL changes. My Lp(a) is sky high, and probably came from my dad, who was diagnosed with aortic stenosis--a "sticky" heart valve in the aorta. That's a problem if you want to have oxygen flowing to your brain and avoid heart attacks and strokes! It's also very treatable. A CT scan of your aorta if you have high Lp(a) would be quick and painless and allow your doctor to know that your heart valves are healthy.
A coronary artery scan: This is a different quick, painless CAT scan of your arteries to see how much, if any, coronary plaque you have. If you have a high amount, that is another reason for focusing on healthy foods and some exercise (maybe more than the number on the scale.)
A referral to a cardiologist: I know people in the US who have a family history like yours who have been followed periodically by a cardiologist for years--just because they are trained to try to prevent, not just treat, heart disease.
A referral to a nutritionist: It's hard to figure out what to eat, and can be very difficult to get the right nutrients in midlife. If you're a woman, the last thing you want to do in your 40's is starve your brain while you're trying to lose a few pounds.

Lots of strong research shows that being "less inactive" may be just as important as a certain number of steps each day. People who regularly got up from sitting and walked around, doing things that required some exertion (housework, walking the dog) were less likely to get dementia. Getting an app on your phone and trying to move your daily average of steps would be a way to track being "less inactive" or finding a way to add a walk into your day, or finding a gym nearby that isn't just muscle-bound guys lifting weights. You'd be surprised how many people who have similar challenges are using gyms--and how much better people have gotten at never body-shaming.

I used to work with amazing teachers of the blind/visually impaired and orientation and mobility instructors, and have gone along as people who were legally blind navigated busy intersections and made mental maps of their neighborhoods or favorite places. So I hope you have also had those people working with you. Facing a further loss of vision, I would encourage you to reach out to your local Association for the Blind and Visually Impaired and ask for a vision consultation to get the latest tech and to also plan how to make your environment work for you.

Your single copy of ApoE 4 only raises the risk of Mild Cognitive Impairment or Alzheimer's to about 20-25% by the age of 85--if you reduce the risk of serious heart disease or strokes. You now having the benefit of seeing your family's history with 20/20 vision--and being able to write a new chapter for the next several decades of your life.

Hugs from a 70 year old who is proving my genetic "prediction" wrong every day!

Nancy
4/4 and still an optimist!
Rainy
Contributor
Contributor
Posts: 45
Joined: Thu Jan 25, 2018 2:05 pm

Re: New from Canada

Post by Rainy »

Welcome to this marvelous forum from a fellow Canadian, brave Lebcar! Both of my parents were diagnosed with Alzheimer's in their mid-70s, several years before they died. Many close relatives also died with, but not necessarily due to, dementia. So in my mid-60s I signed up for 23andme testing. As a dedicated Girl Scout, I wanted to follow the motto "Be Prepared". In addition to discovering and rediscovering beloved cousins, 23andme told me that I have two copies of ApoE4, so I have a strong (but NOT certain!) risk of Alzheimer's. I should note that my 4/4 result has been validated several times with tests as part of Alzheimer's studies I have opted to join. It took me a few months of fear and silence to be able to share with friends and family about my 4/4 result. I didn't want people to judge any memory lapses, such as forgetting where I left my keys, as the beginning of my Alzheimer's. I had already bought long-term-care insurance in my 50s, following in my parents' footsteps, as they too had fortunately bought their own long-term-care insurance policies when those policies first became available. My Dad used his insurance for two years, while Mom used her entire $250,000 long-term-care policy benefit before she died. Please note that this is definitely not a plug for insurance, and I fervently hope not to have to use my own policy, but it is a hedge that is worth it to me personally.

Now I find my own peace of mind by proactively staying current in the science, volunteering in my community, participating in studies to find effective treatments (dare I say a cure?!), and following an active, healthy lifestyle that will hopefully boost my brain and vascular health. Mainly I want to be here to savor close relationships with family, friends, and especially my rambunctious little grandchildren! I think you will find support and kinship - and even a little humor - among members of this forum, dear Lebcar! Welcome once again!
Rainy
E4/E4
"Live your life, live your life, live your life!" Maurice Sendak
User avatar
TCHC
Contributor
Contributor
Posts: 109
Joined: Mon May 02, 2022 6:56 am
Location: UK
Contact:

Re: New from Canada

Post by TCHC »

Well done for all your work on your lifestyle already. Well done for going ahead and finding out your DNA results despite your doctor's disinclination. Well done for finding this forum and asking for help and support. You're on the right path. You can do this. There's plenty of advice and guidance on this site to help you. Ask for any other help you need. I see one of the interns already pointed you to some starting places.
I'm in the UK and I only found out about all this quite by chance. It's not well known about over here. But I'm so grateful to have found out about the protocol and to have been able to see Mum improve. I'm on prevention myself.
Lindsey
TCHC - Lindsey Byrne - The Cognitive Health Coach - UK
Functional Medicine Certified Health Coach (FMCHC)
Certified Re:CODE 2.0 Health Coach
Post Reply