A bit of a belated introduction!

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
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babl
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A bit of a belated introduction!

Postby babl » Sat Nov 23, 2019 10:26 pm

I suppose it’s time I introduce myself, though I’ve been posting and lurking here for awhile. I’m a 55 year old female, living near Seattle, and while I don’t have the apoe4 gene (I’m apoe3/3) I have a strong family history of dementia. For the past several years my mother’s dementia has been getting progressively worse, my grandmother (on my mother’s side) died from complications from dementia, and my aunt and uncle (all on my mom’s side) are now slipping down the same pathway. A few years ago my mom was diagnosed as having Alzheimer’s though the diagnosis was based only on a verbal cognitive test. My grandmother was never officially diagnosed.

Watching my mom’s cognitive abilities slip away has been the toughest experience of my adult life. Unfortunately, she wants nothing to do with any treatments or supplements beyond what her doctor tells her. Even more unfortunately she lives in a small town, with a doctor whose knowledge of dementia is minimal. This hasn’t stopped me from reading up on the issue and trying, though! But mostly what I’m learning is for my own benefit, hoping to avoid the same path myself.

I've often wondered what factors in my mom’s life may have brought on her dementia. She’s always struggled with her weight, has always had problems with high blood pressure and has always struggled with anxiety. Certainly these are some of the major factors we often hear about as potentially leading to dementia. But my grandmother was quite thin and didn’t have problems with her blood pressure, and my aunt and uncle, also. Not much anxiety there either. It’s all so murky and unclear.

Earlier this year I listened to Peter Attia’s fascinating interview with Francisco Gonzalez-Lima. I’d done plenty of reading on Bredesen’s protocol up to this point, and Gonzalez-Lima’s perspective struck me as a deeper dive into one of the many potential contributors to dementia. I like what Julie said in another thread, that Gonzalez-Lima and Bredesen are just different sides of the same coin. I feel the same. If I’ve learned anything these past few years, it’s that the cause of Alzheimer’s is still not well understood, and that it’s probably less a stand-alone, discrete disease in and of itself, than it is a downstream result from upstream dysfunction (be it too much circulating glucose, vascular dysfunction, lack of exercise or mental stimulation, aluminum from our deodorant and cooking pans, mold exposure, poor sleep… the list goes on).

Recently I made some new discoveries and feel I might have a clue about the dementia in my own family. I had an MRI scan of my brain a few weeks ago. It turns out I have some areas of damage to my brain, possibly from small strokes. I also learned that I inherited the Factor V Leiden gene (hetero) from my mother. This has me wondering if the dementia in my family is more vascular in nature? No one in my family has ever suffered the kind of stroke most of us think about when we hear the word, but there does seem to be something going on with the small blood vessels of the brain and TIA's. It appears to be the accumulation of damage to the brain from these TIA’s (or some sort of small blood vessel dysfunction) that eventually presents as dementia.

It has me reflecting on the Gonzalez-Lima interview again. Much of it seems relevant here. But Bredesen’s protocol, addressing various factors that in turn affect the blood and blood vessels, is also key. Again, I think it was Julie who mentioned in another thread that it all comes down to getting nutrients to the brain, whether through improving the blood through reducing glucose and improving other key nutrients, or insuring the health of the blood vessels and their ability to deliver those nutrients. Both are important, two sides of the same coin.

When my doctor told me the results of the MRI and we discussed my family history of dementia and the Factor V Leiden gene, he told me there was really nothing that could be done. His only suggestion was to take a baby aspirin every day. But I know there’s plenty I can be doing. I’m very used to essentially “DIY-ing” my own healthcare thanks to years of frustration with doctors like this who only want to prescribe a pill.

It’s for this reason I’m so thankful for this community and others like it, where intelligent discussions take place about prevention strategies and current research. I also place high value on the excellent podcasts by Peter Attia and Rhonda Patrick (even if I often only understand a fraction of what’s being discussed!). I am so impressed with the many very smart people here on this forum. You’ve set the bar high, and I’m grateful for it and eager to catch up.

When my mom began suspecting she might be headed down the same path as her own mother, she started obsessively playing Sudoku. That was over ten years ago and she still plays to this day. She can’t remember how to start the car (thank god) or use the oven, she can’t remember the last sentence she heard, she can’t tell you the name of the movie she just finished watching, but she can play “ultra difficult” level Sudoku games like nobody’s business! It’s become a very rote task for her. I always cringe a little when I hear someone say that Sudoku will help you stave off dementia. It’s not about the game, it’s about continually challenging the mind to think and figure things out. When the game becomes so easy you can practically play it in your sleep, it’s time to find some new mental challenges! For myself, I get plenty of mental challenge trying to learn how lipids work in the blood, trying to figure out what the endothelium needs to be healthy, or reading up on the latest Alzheimer’s research! Once again I have to give thanks for this wonderful forum. You’re doing your part to keep this little brain of mine very active!

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TheresaB
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Re: A bit of a belated introduction!

Postby TheresaB » Sun Nov 24, 2019 7:28 am

Welcome babl. Better late than never. I started lurking in late 2014 and still haven't introduced myself.

Whenever I hear of a strong maternal history of Alzheimer's, I suspect a mitochondrial link. Mitochondrial DNA is inherited solely from the mother. That doesn't mean there is no vascular aspect, the two probably go hand in hand. This paper https://www.ncbi.nlm.nih.gov/pubmed/19703659 (abstract only unfortunately, behind a paywall) suggests that it is constricted blood flow that induces oxidative stress and over time that is what initiates the mitochondrial failure that leads to Alzheimer’s Disease.

We have a recently added wiki on the mitochondria, if you want to learn more about how to better care for them. https://www.apoe4.info/wiki/Mitochondri ... tochondria
-Theresa
ApoE 4/4

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SusanJ
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Re: A bit of a belated introduction!

Postby SusanJ » Sun Nov 24, 2019 8:13 am

babl wrote:I had an MRI scan of my brain a few weeks ago. It turns out I have some areas of damage to my brain, possibly from small strokes. I also learned that I inherited the Factor V Leiden gene (hetero) from my mother.


Hugs from another who watched a parent struggle with dementia. It's never easy.

Please don't underestimate the effects of TIAs and dementia. My husband and I recently moved to Florida to help care for his sister who has dementia. My hubs is a 3/3, and I don't know my SIL's ApoE status, but his family has a long history of strokes - everyone on his mom's side of the family died of strokes (often having multiple small strokes). His sister is in her late 70s started showing signs almost 10 years ago, and his brother, who is close to 80, and he is now showing signs of cognitive problems. High blood pressure is the likely thread for them, and thankfully my hubs has been treating his since in his late 30s, along with taking daily baby aspirin.

And please also don't underestimate the consequences of Factor V Leiden. I don't have it, but my mom's family had a history of all dying from strokes. One of Mom's younger half-sisters had dementia starting in her 60s, and another younger half-sister, positive for Factor V Leiden, had massive blood clots in her lungs in her 60s and has been on blood thinners since then. One of my brothers had massive blood clots in his mid-60s and is on blood thinners. His doctor said he should have been dead given the extent of clotting he had and he spent a week in the hospital lying on his back as they treated clots in his legs and lungs. (Unfortunately he didn't test for Factor V, so I don't know if he carries it. Says it won't change his treatment plan, which I get, but I wish he would do it for his kid's sakes.)

Do consider finding a doctor with expertise in coagulation, vascular medicine or hematology to help you navigate this. And don't rule out medication - it could save your life.
Last edited by SusanJ on Mon Nov 25, 2019 4:26 pm, edited 1 time in total.

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babl
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Re: A bit of a belated introduction!

Postby babl » Sun Nov 24, 2019 8:52 pm

TheresaB wrote:Whenever I hear of a strong maternal history of Alzheimer's, I suspect a mitochondrial link. Mitochondrial DNA is inherited solely from the mother.


I've never heard of a mitochondrial link but will be sure to check out the new wiki entry. Thank you so much for mentioning this! Very good to know!

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babl
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Re: A bit of a belated introduction!

Postby babl » Sun Nov 24, 2019 8:54 pm

SusanJ wrote:Do consider finding a doctor with expertise in coagulation, vascular medicine or hematology to help you navigate this. And don't rule out medication - it could save your life.


Wise words, to be sure! Time to go doctor-hunting again... such a chore, but you have to do what you have to do. Thanks!


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