Introduction

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
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Joanna T.
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Introduction

Post by Joanna T. »

Hello Everyone,

My name is Joanna and I am from Ontario, Canada. I'm hoping to find other Canadians and Ontarians in particular in this group!
My mother passed away from AD in January and previous to this her mother passed of AD in 2009. I have found this very difficult to deal with mentally. I am 42 and am having difficulty seeing my future AD free. I have a son who is 8 and a teaching career I love and the possibility of having an APO E gene seems very likely and scary for me. I was offered the opportunity to have the genetic testing done for free due to there being a "strong history" of AD in my family, but I declined as I don't think that having a definitive "yes" would be good for my wellbeing. For now I am operating with the assumption that I have at least one of the genes and that I need to significantly improve my lifestyle (exercise, stress management, food choices etc.) in order to have a shot at managing this.

In the past months since my mother's passing I have been crushing books on Alzheimer's prevention. I have read Dr. Bredesen's books and also found Lisa Mosconi's book The XX Brain to be very helpful and instill some hope. I listen to Dr. Mark Hyman a lot on his podcast as well. I do find that the "cloud" of knowing that this disease could be coming down the pipe for me can leave me very anxious at times. The Ontario health system has also not been great. When asking for certain tests (like fasting glucose) or for other simple blood tests so that I can do my own baseline health account, doctors won't cooperate and in fact will tell you that you don't need it because you're not diabetic or suspected diabetic. I have also found that the more knowledgeable I become from my extensive reading of credible sources I have to be careful when working with healthcare practitioners so that I don't get put off and am interpreted as a know it all which is not my intent. I have now found a naturopath that I can work WITH to help set me on a good program and she values that I am invested enough in my health to read and question and implement. I am still frustrated by our health system though. In the US one can access (for a cost!) the Dr. Daniel Amen clinic and have a brain scan and also seem to have more resources that support AD prevention - like Dr. Richard Isaacson's project in Florida, but in Canada I haven't found any support for my mental state in wrestling with this or monitoring my current brain state to stay in a place of prevention and warding off. I reached out to the Toronto Memory Clinic and explained what I'm looking for - prevention support and mental health support for people like me who are grieving over a lost parent of AD and concerned for themselves -- but they told me that I am too young and that (they only work with 60 years +) and that they work with people who actually have symptoms of AD. I feel like there is no support for people like me in Ontario and none of my healthcare workers are aware of anything.

So with all of this I have decided that I am the CEO of my health and I can choose to build my team of people to support me and that includes me supporting me by doing my research and making required lifestyle changes. :)

Looking forward to connecting with people here. Maybe I will find some peace in meeting others with similar experiences and insights :)

Joanna
JD2020
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Re: Introduction

Post by JD2020 »

Hi Joanna, and welcome.

It sounds like the Canadian health care system is even more difficult than the US health care system for this sort of thing. I am sorry. Very frustrating.

The office manager at my ReCODE doc's office told me that the doc has video appointments with people in other countries. She specifically mentioned having a patient in France, so why not Canada? Is that an option? Find a doctor here who is educated about these issues and can guide you? If you have a US doctor's blood draw order, will Canada allow the blood draw?

This would be very expensive because you would be paying out of pocket, but that is no different than it is here. These docs spend a ton of time with each patient, and I have never met an integrative doc who took insurance.
Theresa.J
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Re: Introduction

Post by Theresa.J »

Joanna T. wrote: Fri Aug 19, 2022 12:47 pm Hello Everyone,

My name is Joanna and I am from Ontario, Canada. I'm hoping to find other Canadians and Ontarians in particular in this group!
My mother passed away from AD in January and previous to this her mother passed of AD in 2009. I have found this very difficult to deal with mentally. I am 42 and am having difficulty seeing my future AD free. I have a son who is 8 and a teaching career I love and the possibility of having an APO E gene seems very likely and scary for me. I was offered the opportunity to have the genetic testing done for free due to there being a "strong history" of AD in my family, but I declined as I don't think that having a definitive "yes" would be good for my wellbeing. For now I am operating with the assumption that I have at least one of the genes and that I need to significantly improve my lifestyle (exercise, stress management, food choices etc.) in order to have a shot at managing this.

In the past months since my mother's passing I have been crushing books on Alzheimer's prevention. I have read Dr. Bredesen's books and also found Lisa Mosconi's book The XX Brain to be very helpful and instill some hope. I listen to Dr. Mark Hyman a lot on his podcast as well. I do find that the "cloud" of knowing that this disease could be coming down the pipe for me can leave me very anxious at times. The Ontario health system has also not been great. When asking for certain tests (like fasting glucose) or for other simple blood tests so that I can do my own baseline health account, doctors won't cooperate and in fact will tell you that you don't need it because you're not diabetic or suspected diabetic. I have also found that the more knowledgeable I become from my extensive reading of credible sources I have to be careful when working with healthcare practitioners so that I don't get put off and am interpreted as a know it all which is not my intent. I have now found a naturopath that I can work WITH to help set me on a good program and she values that I am invested enough in my health to read and question and implement. I am still frustrated by our health system though. In the US one can access (for a cost!) the Dr. Daniel Amen clinic and have a brain scan and also seem to have more resources that support AD prevention - like Dr. Richard Isaacson's project in Florida, but in Canada I haven't found any support for my mental state in wrestling with this or monitoring my current brain state to stay in a place of prevention and warding off. I reached out to the Toronto Memory Clinic and explained what I'm looking for - prevention support and mental health support for people like me who are grieving over a lost parent of AD and concerned for themselves -- but they told me that I am too young and that (they only work with 60 years +) and that they work with people who actually have symptoms of AD. I feel like there is no support for people like me in Ontario and none of my healthcare workers are aware of anything.

So with all of this I have decided that I am the CEO of my health and I can choose to build my team of people to support me and that includes me supporting me by doing my research and making required lifestyle changes. :)

Looking forward to connecting with people here. Maybe I will find some peace in meeting others with similar experiences and insights :)

Joanna
Welcome to the ApoE4.info site, Joanna! I'm so glad you found us.

First let me say that I am so sorry for the loss of your mother to AD earlier this year. It sounds like you are in the prime years of a career you love and busy parenting an 8 year old son. Walking through the stages of Alzheimer's Disease with your mom was most certainly emotional, stressful and challenging. Given this experience and the family history of AD, you are understandably worried for your own future health. And even so, you have shown bravery and a tremendous positive perspective in choosing to be the CEO of your own health!

I can relate to your ambivalence about doing genetic testing to find out your ApoE4 status. My grandmother died of AD and my mother has been showing signs of cognitive decline. We don't know either of their genetic background. At this point, I too choose not to do genetic testing and instead focus on making lifestyle changes that will support my cognitive health. At 42, you are young and any changes you make now can potentially turn off or suppress the expression of genes associated with AD. This is known as epigenetics, as I'm sure you've learned through your research.

I am not Canadian, so I am hopeful that some of our Canadian users will chime in and share their challenges and success with the Canadian health system. In the meantime, as a Support Team Intern, I can share a couple of resources to help you get the most out of your experience on the ApoE4.info site:

First, if would like to learn more about ApoE4, 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.

In addition, the How to Guide offers tips on how to navigate forums, how to use the Search function to locate topics of interest, and how to subscribe to those topics in the forums. When responding to posts, if you use the quotation icon in the upper right of any post, this will "quote" the user and they will get an email notification of your response.

Again, I commend you on the research and proactive steps you have take so far and your positive attitude in the face of anxiety! This is a warm and supportive community. I hope you find that it is a good resource! Please reach out if you need any further assistance using the site.

Take care and be well.

Warmly,
Theresa
Theresa.J, MPH
ApoE4.info Support Team Intern
Functional Medicine Certified Health Coach
Goldygirl
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Re: Introduction

Post by Goldygirl »

“Joanna T.” wrote:Hello Everyone,

My name is Joanna and I am from Ontario, Canada. I'm hoping to find other Canadians and Ontarians in particular in this group!
My mother passed away from AD in January and previous to this her mother passed of AD in 2009. I have found this very difficult to deal with mentally. I am 42 and am having difficulty seeing my future AD free. I have a son who is 8 and a teaching career I love and the possibility of having an APO E gene seems very likely and scary for me. I was offered the opportunity to have the genetic testing done for free due to there being a "strong history" of AD in my family, but I declined as I don't think that having a definitive "yes" would be good for my wellbeing. For now I am operating with the assumption that I have at least one of the genes and that I need to significantly improve my lifestyle (exercise, stress management, food choices etc.) in order to have a shot at managing this.

In the past months since my mother's passing I have been crushing books on Alzheimer's prevention. I have read Dr. Bredesen's books and also found Lisa Mosconi's book The XX Brain to be very helpful and instill some hope. I listen to Dr. Mark Hyman a lot on his podcast as well. I do find that the "cloud" of knowing that this disease could be coming down the pipe for me can leave me very anxious at times. The Ontario health system has also not been great. When asking for certain tests (like fasting glucose) or for other simple blood tests so that I can do my own baseline health account, doctors won't cooperate and in fact will tell you that you don't need it because you're not diabetic or suspected diabetic. I have also found that the more knowledgeable I become from my extensive reading of credible sources I have to be careful when working with healthcare practitioners so that I don't get put off and am interpreted as a know it all which is not my intent. I have now found a naturopath that I can work WITH to help set me on a good program and she values that I am invested enough in my health to read and question and implement. I am still frustrated by our health system though. In the US one can access (for a cost!) the Dr. Daniel Amen clinic and have a brain scan and also seem to have more resources that support AD prevention - like Dr. Richard Isaacson's project in Florida, but in Canada I haven't found any support for my mental state in wrestling with this or monitoring my current brain state to stay in a place of prevention and warding off. I reached out to the Toronto Memory Clinic and explained what I'm looking for - prevention support and mental health support for people like me who are grieving over a lost parent of AD and concerned for themselves -- but they told me that I am too young and that (they only work with 60 years +) and that they work with people who actually have symptoms of AD. I feel like there is no support for people like me in Ontario and none of my healthcare workers are aware of anything.

So with all of this I have decided that I am the CEO of my health and I can choose to build my team of people to support me and that includes me supporting me by doing my research and making required lifestyle changes. :)

Looking forward to connecting with people here. Maybe I will find some peace in meeting others with similar experiences and insights :)

Joanna


Hi Joanna,
I read your recent post and would like to comment because so much of your story resonated with me. First, I am a fellow Canadian, and Ontarian and have recently joined this group. I am sorry to hear about the recent loss of your mom as a result of AD. I lost my mom last June, following several years with Cerebral Vascular Dementia. As you surely understand, it was not an easy journey. I am determined to be more instrumental in shaping my destiny, as both my mom’s brothers also suffered with different types of dementia and I witnessed cognitive, physical and functional decline. Through this group, I am learning that there are many lifestyle choices that I can make that can support me in limiting or preventing my own cognitive decline. I can be the master of my destiny! So can you!

Like you, I am also a teacher (my second career, and one that I absolutely love!) and have started reading many books on the topic of AD. I am also reading Dr. Bredesen’s book and learning so much about nutrition, stress management, sleep and exercise to support my health and well being. Dr. Hyman is another favourite podcaster of mine who is empowering me to be proactive about my health! There is so much that we can do that we DO have control over.

I share your frustrations with the Ontario Healthcare System and have found support accessing alternative and functional medicine approaches which have been very educational. As an Ontario educator, my health benefit plan has enabled me to access some resources that are covered by my health insurance (naturopathic physician, psychologist, physiotherapist) and these are also supporting my health. Have you been able to tap into any of those resources? I am very optimistic about my future as I know that I am doing all that is within my control to favour optimal health and well being, regardless of my genetic predisposition (like you, I have not yet been genetically tested). You are absolutely correct when you say that you are the CEO of your health, but remember that you have a community of like minded people to support you and educate you, and you don’t have to go it alone. I am happy to be part of “your team” to share resources, strategies and insights. The learning never stops and it is so encouraging to have a caring community such as this ApoE4 Forum to help guide, support and educate us.

Please feel free to reach out with any questions or concerns, or even if you need some support/reassurance. In a couple of weeks I will be joining the ApoE4 team as a support intern! More learning opportunities!

Warmly,
Barbara
Goldygirl
Functional Medicine Certified Health Coach
mike
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Re: Introduction

Post by mike »

Joanna T. wrote: Fri Aug 19, 2022 12:47 pm I was offered the opportunity to have the genetic testing done for free due to there being a "strong history" of AD in my family, but I declined as I don't think that having a definitive "yes" would be good for my wellbeing. For now I am operating with the assumption that I have at least one of the genes and that I need to significantly improve my lifestyle (exercise, stress management, food choices etc.) in order to have a shot at managing this.
Joanna, If your mom had AD, it does not mean that you will be a carrier of ApoE4. Your mom may not have ApoE4. Or she could have had one copy and she didn't pass it on. to you. Even if she had 2 copies, you would only get 1 from her. If your dad did not have any, then the most you can have is one copy. Lifestyle is important regardless, but knowing your ApoE4 status can help you decide what is most important. ApoE is used to take out the trash from the brain, and the ApoE4 version is less effective. All of the lifestyle changes are ways to keep that trash down to a minimum. Much of it has to do with keeping the Blood Brain Barrier working properly to keep viruses and other nasties out, and to allow fuel to pass through at proper levels. If you can do that, then the ApoE4 version plays less of a role. Based on my reading of current research, there may actually be a fix for ApoE4 coming soon. Then it will only be those with poor lifestyles who get AD.
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Re: Introduction

Post by TCHC »

Hi Joanna,
You've had some replies already, so I won't repeat anything but:
1. I'm so sorry for your loss and I too am working on prevention as my Mum has AD & 1x ApoE4.
2. Well done on your determination to improve your health!
3. If you wanted to track your starting point and progress and you really don't want any form of genetic testing etc., this might be useful for you: https://www.apollohealthco.com/cognitive-assessment/
I got some great improvements in my scores by tackling lifestyle changes , having the numbers to "prove" it makes me feel better about sticking with it.
Good luck with your journey and keep coming back here for support, it's really helpful
I wish you well
Lindsey
TCHC - Lindsey Byrne - The Cognitive Health Coach - UK
Functional Medicine Certified Health Coach (FMCHC)
Certified Re:CODE 2.0 Health Coach
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