3 Generations of Dementia and an Introduction

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
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TLS
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3 Generations of Dementia and an Introduction

Post by TLS »

I have been on the forum for a number of years and have finally decided to introduce myself. This site has been incredibly helpful to me and provides me with hope that science is on the way to understanding this terrible disease.

I was researching my genetics to try to understand why my father's side of the family has so much incidence of heart disease with many people dying of stroke and heart attacks, when I discovered I am an APOE 3/4. Imagine my surprise when it turned out the APOE 4 was on my mother's side!

On my mother's side there is a dementia going back at least 3 generations. Some get Parkinson's and most get Alzheimer's. I am very, very sad to say that my mother is now dealing with MCI. She has always exercised and ate a good diet (no fast food, no sweets, etc.) but has high blood pressure, thyroid disease, and she dental issues. In 2015 I asked if she would try an alternative doctor when we first noticed some issues. Answer was no way. Then COVID hit and there was a big drop in her abilities.

Good news is that I started to put her on supplements recommended by the protocol one at a time to make sure she could handle them. My family also made sure socialization happened. One of the supplements she is on is a plasmalogen. She is on galatamine and her new doctor is adjusting her thyroid medicine which put her into a bit of hyper thyroid. Too much or too little thyroid messes with your brain.

My father says he has noticed a big difference! At this point there are good days and not so good days.

I believe I went through a period of mourning. My Mom is still my Mom but then again she's not herself. I still get very sad, however I also try to enjoy the good days. She has a great temperament and personality so when I can I get her to laugh and hopefully she can remain stable like this for another 3 to 6 years! That would be huge!

Many thanks to the Julie for starting this site, the moderators and support team!! :D
apoe 3/4
NF52
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Re: 3 Generations of Dementia and an Introduction

Post by NF52 »

TLS wrote: Tue Nov 22, 2022 5:33 am I have been on the forum for a number of years and have finally decided to introduce myself. This site has been incredibly helpful to me and provides me with hope that science is on the way to understanding this terrible disease.
...
On my mother's side there is a dementia going back at least 3 generations. Some get Parkinson's and most get Alzheimer's. I am very, very sad to say that my mother is now dealing with MCI. She has always exercised and ate a good diet (no fast food, no sweets, etc.) but has high blood pressure, thyroid disease, and she dental issues.
...
She is on galatamine and her new doctor is adjusting her thyroid medicine which put her into a bit of hyper thyroid. Too much or too little thyroid messes with your brain.

My father says he has noticed a big difference! At this point there are good days and not so good days.

I believe I went through a period of mourning. My Mom is still my Mom but then again she's not herself. I still get very sad, however I also try to enjoy the good days. She has a great temperament and personality so when I can I get her to laugh and hopefully she can remain stable like this for another 3 to 6 years! That would be huge!...
Hi TLS,

Thank you for sharing your family's history and the love and support you and your father are giving your mom.
Both my mother and MIL were like your mom, loving and smart women who liked to laugh. That never left them, which seems a great gift to those of us who love them. I have a friend whose SIL is a little further along, but still loves seeing her family, petting cats--and watching shows like America's Funniest Home Videos! Laughter may be a great medicine for all of us.

It sounds like her doctor is very involved and monitoring her closely, which must be reassuring, along with your wise suggestions on supplements. Since she had high blood pressure, she may be especially benefiting from the galantamine, which is a type of ACE inhibitor, an anti-hypertensive. ACE inhibitors have been studied in populations without MCI with mixed results, but a recent large study of about 400 people with MCI, carefully followed in the ADNI cohort for years, showed a definite benefit in slowing progression from MCI to dementia diagnosis if anti-hypertensives were used. [These folks and their families are my heroes, since much of what we know about ApoE 4 and risk and resilience comes from their selfless involvement in a study with no drug trial.]

Below is a recent (June 2022) image from a well-designed study of people in the ADNI (Alzheimer's Disease Neuroimaging Initiative). The teal line shows that people with high blood pressure on ACE inhibitors had about a 50% chance of NOT progressing to MCI over 8 years from diagnosis, while those with no medications reached that point after only 4 years.
hypertensionaha.122.19378.fig04.jpg
Angiotensin Receptor Blockers Are Associated With a Lower Risk of Progression From Mild Cognitive Impairment to Dementia

I wish you all of those 6 years with your mom to see her laugh.

Nancy
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4/4 and still an optimist!
TLS
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Re: 3 Generations of Dementia and an Introduction

Post by TLS »

Thank you so much for the words of encouragement and the information on Galantamine. I was not aware of these benefits!! Peace.
apoe 3/4
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