Short Intro and curious about preCODE or similar

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
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WellnessSeeker
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Short Intro and curious about preCODE or similar

Post by WellnessSeeker »

Hello! My name is Amy and I live in Chico, CA. I'm APOE 3/4.

My 75-year-old mother was first diagnosed with AD just before she turned 70. She has lived in a memory care facility now for over 5.5 years and is now in the very late stages of the disease and on hospice (and has been for more than 6 months).

My husband's father was diagnosed with AD in his late-50's and died at the age of 64, less than a year after we were married.

We have two daughters, ages 12.5 and 9.5. As a family, we have been very actively on a health journey since our younger daughter was born in late 2011 and have made many positive lifestyle changes during this time (and we were already living a fairly healthy lifestyle before then).

However, as we are both approaching our 50th birthday in the next few months, we are recognizing the need to up our prevention plan. We have recently discovered the Dale Bredesen book, The End of Alzheimer's, and are considering pursuing his preCODE program since we live close enough to take advantage of that option.

I would be very eager to hear from any of you who have personally pursued this option or from anyone else in the group who has found a program or a practitioner whom you trust (with your life, literally!).

Additionally, I wanted to mention that I have all the legal, medical, and financial responsibility for my mother and her care, and have been managing all that since my mother relocated herself (prior to her AD diagnosis, though after she was already showing some early signs) to Chico, where our family lives, when our youngest was about 20 months old. To say the least, we have genuinely experienced the "sandwich generation" phenomenon, and it has been so hard for us in so many ways. As much as I am motivated to avoid developing Alzheimer's myself (to the extent possible), I am even more motivated to spare my children the future burden of caring for one or both of their parents with Alzheimer's.

I am so grateful to have found this community and thank all of you for your contributions to the dialog that hopefully will benefit us all.
NoNotMe
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Re: Short Intro and curious about preCODE or similar

Post by NoNotMe »

Welcome Wellness Seeker,

I'm so glad you found this site! I came here with similar curiosities and concerns and we have much in common. My mom is also in Hospice care with late stage dementia. She has been in memory care for over 5 years and luckily my Dad lives independently in a building within walking distance. He's an amazing comfort to our family and is at her bedside everyday. It's amazing how different their lives are in these golden years. I believe much of that is due to the differences in their lifestyles.

It sounds like you're doing much as a family to stay active and healthy. We are very supportive of the Bredeson Protocol here and have additional information for you to continue making great lifestyle modifications. You're on the right course! Here is a link to our PRIMER. This was authored by a doctor who is APOE4:4 and doing very well with preventative strategies. I've also included the WIKI which will support your ongoing inquiry. There are so many topics of interest that might support you. Please continue to SHARE YOUR STORY. Here you will find topics of interest and various stories from our very active and educated members.
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I hope you will continue to share your wellness journey and stay ahead of the latest strategies for best practices. We are here to support you and hope you will check in often.

In Good Health,
Erin
Last edited by NoNotMe on Mon Aug 23, 2021 7:11 pm, edited 1 time in total.
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Re: Short Intro and curious about preCODE or similar

Post by NF52 »

WellnessSeeker wrote:Hello! My name is Amy and I live in Chico, CA. I'm APOE 3/4. ...
We have two daughters, ages 12.5 and 9.5. As a family, we have been very actively on a health journey since our younger daughter was born in late 2011 and have made many positive lifestyle changes during this time (and we were already living a fairly healthy lifestyle before then).

However, as we are both approaching our 50th birthday in the next few months, we are recognizing the need to up our prevention plan. We have recently discovered the Dale Bredesen book, The End of Alzheimer's, and are considering pursuing his preCODE program since we live close enough to take advantage of that option.

....As much as I am motivated to avoid developing Alzheimer's myself (to the extent possible), I am even more motivated to spare my children the future burden of caring for one or both of their parents with Alzheimer's.

I am so grateful to have found this community and thank all of you for your contributions to the dialog that hopefully will benefit us all.
A warm welcome, Amy, from someone who is just about 5 years younger than your mother, and has experienced many of those "sandwich generation" challenges that have probably made your 40's seem like a rollercoaster of emotions and demands on your time. Your peers may have no idea what you're dealing with now, but I suspect you will be a real source of support and helpful suggestions as their parents need more support. I hope your mother feels comforted and safe in hospice; it was a blessing to my mother and both in-laws and to our families. It allowed us to focus on moments of deep connection and peaceful goodbyes that were incredibly meaningful.

As someone with ApoE 4/4 and three siblings all between 68 and 72, none of us has known cardiac disease, high blood pressure or cognitive impairment, although our father died of cardiac arrest at age 64 and our mother had decades of high blood pressure and a slow decline before her death with AD and heart failure at age 86. So I've begun to realize that our parents (and probably your mom and your husband's dad, although fairly close to me in age) had vastly different life experiences and health care management than you and your husband have had and will continue to have.

As someone who gets to hear a lot of AD researchers as a member of an advisory board and a consumer reviewer on AD grant research, here's some of what I've learned:
  • *Lifestyle measures have reduced Alzheimer's and other dementia's dramatically as a percentage of the population in the last 20 years. [The numbers are growing because of the size of the Baby Boomer generation, not as a % of my generation.]
    *Public health and policy to improve education levels beyond high school, reduce air and water pollution, reduce smoking and alcohol abuse, prevent and treat diabetes and heart disease, prevent traumatic brain injuries and support access to health care, occupational and social challenges could reduce dementia diagnoses by 40% Dementia prevention, intervention, and care: 2020 report of the Lancet Commission
    *Research on prevention, diagnosis and treatment of Alzheimer's and related dementias (AD/RD) has increased from $986 million in 2018 to an estimated total of 2.8 billion in 2021 and a planned request for $3.4 billion for the fiscal year 2023, reported in July 2021.https://www.nia.nih.gov/about/bypass-bu ... al-archive
    *Although drug trials get lots of the headlines, an incredible amount of research into the complex decades-long lead up to adult cognitive impairments is focusing on topics ranging from the importance of sleep to the need to measure neuro-inflammation and understand how to protect synapses from injury and infection.
Your mother would have been born in 1946 and probably NEVER had her cholesterol checked until after menopause, like me. She may NEVER have had an ECG as a part of routine physical before she turned 65, since women weren't thought to be at risk of cardio-vascular disease. She probably had no hormone replacement therapy and may have been discouraged from being physically active by social norms.

I have several friends in their 60's and 70's who, like me, have a high genetic risk of AD or vascular dementia due to ApoE4. They include a judge, a professor, a competitive bridge player, a former CFO who helped her local non-profit become solvent and helps seniors with their taxes. They also include many members of this forum in their 60's and 70's.

Your mother's difficult journey is not destined to be yours, nor is your father-in-law's young-onset Alzheimer's diagnosis in his 50's likely to be your husband's fate. Your husband has only 50% of his genes from his dad, so should also look at what his mother's side of the family has experienced.

At age 50, you can certainly make use of the Pre-CODE protocol, and you can also pick and choose a DIY approach with checking Dr. Stavia's section on Biomarkers from the Primer for some tests to begin your pre-birthday blood donation! I would also suggest our wiki on What's New in AD Research and How You Can Accelerate Research. Some observational studies would love to have motivated 50 year olds become part of well-designed population-based studies.

As for those wonderful daughters: they will grow up knowing their parents cared for their grandma and you will, I hope enjoy seeing their children, as I enjoy our three healthy adults kids and our two active grandchildren. Life can be great after 50; I hope you feel empowered to make that your future.
4/4 and still an optimist!
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