Welcome!!!

[selfdestiny]

Greeting from Rick in California, 3/4 heterozygote. Great place to hear how others are cooping with AD. MY interests are in two broad areas:
1) Delaying onset and discerning between strategies that might help and those that may be harmful.
2) Long term management, providing quality care and helping families manage

My mother died last year at 96. Her 95 year old sister continues a healthy and independent lifestyle. Different genes and different life events most likely changed there outcomes. In the last two years of Mom's life she lost the ability to carry on a conversation and could only take a few steps without assistance. Watching herslow and steady decline and how it affected our family taught me many lessons about life.

I love the US Alzheimer's organization. Early in life I adopted a regular exercise regime.

Whenever I travel I hike and run through the countryside. A great way to see the world. Last year I started working hard to drop 15 points from my blood pressure of 140/90. Weight wise, I'm lean. On diet, I love my sugar and fat. I'm working on it, but part of me is uncertain. The science is all over the board.

Finding it very hard to get my HMO to order a lumbar puncture/spinal tap. Would love some quantitative data on my brain health. Any recommendations for a good AD clinic in the San Fransisco Bay Area?

- Rick

[slacker]

Welcome Rick;

You may find our primer, written by an MD member, of interest, especially to address your question #1. The link is here:
viewtopic.php?f=33&t=1418

For question #2, there is a caregiver thread; the link is here:
viewtopic.php?f=2&t=2566

Happy browsing! We look forward to hearing from you.

[vsanthony]

Hello from Phil & Vicky in MA and FL. He is 3/4 hetero, she's the computer geek who finds info for him. So this is about Philip. Mother and 2 uncles had LOAD, at least 1 died from it. Also, from Promethease: "Increased risk of Alzheimer's disease, consider reducing iron levels. Carriers of the minor alleles for rs1049296 (C2) in the transferrin TF gene and rs1800562 (C282Y) in the HFE gene along with an APOE epsilon 4 genotype were reported to have a risk of late-onset Alzheimer's disease (AD) 37.5 times higher" Not liking this info even though we barely know what it means. P's brother John referred us to this site and you guys are terrific. We are wading in, for better or worse. Right now, P is doing nothing differently health-wise: 56, good shape (runner, but hips are starting to go), physical job, thin. Eats sugar and carbs but not in excess. We haven't gotten any testing done besides the usual. I have sent the 1st 10 pages of Promethease to his Dr. so she's watching iron levels. Anyhow, thanks to all, we'll be around.

[mezzomomma]

Hello, I'm a 51 year old. My daughter-in-law is getting her Ph.D. in bioinformatics and encouraged me to get tested. I did 23&me and fed the data to Promethease. The primary news was my 4/4 status. I knew I was at risk in a general way based on my uncles who lived long enough to become afflicted. Having this specific information is more concrete. Reading about online communities in the NYT made me want to seek out others learning about their status.

[Lucy5]

Welcome to our group mezzomomma. As a sister 4/4, I'm glad your found your way here; this is a very supportive community with a great deal of combined knowledge that I believe you will find helpful (as I have!). When you have a chance, I'd like to recommend taking a look at our site Primer written by our member doctor, Stavia. There's a wealth of knowledge to be found there about all things E4 and it offers a great blueprint for healthy lifestyle strategies for us.
I the meantime, as you have questions, please ask away. Looking forward to seeing you on the forums!
-Lucy

[Lucy5]

Hello Phil & Vicky and welcome to the group! From your introduction it sounds like you're off to a good start sending your Promethease results to your Dr. When you're in the mood to wade in further, I recommend diving into our very thorough site Primer written by a member doctor; it's a wonderful resource for all of us.

From another thin person who LOVES sugar and carbs, I hate to be the bearer of bad news that as you dig in deeper, you'll find that
everything you learn will lead you to the inescapable conclusion that he'll need to work at eliminating both. It can be tough (certainly for me, anyway!), but definitely worth the effort.

As you have questions, please ask away. This is really supportive community with lots of knowledge; we all learn so much from each other.
-Lucy

[Julie G]

Welcome vsanthony aka Phil & Vicky! Congrats on the healthful lifestyle thus far, Phil. No doubt it will help you prevent the multiple pathologies associated with our risky gene. Vicky, as a sister, you remind me of myself . I have 3 brothers, also at potential risk due to their 4/4 sister & family history, and I'm always trying to gently lead them towards health optimization. You're both very welcome and may find the information in our Primer to be a good starting point.

[Magda]

Hello from Phil & Vicky in MA and FL. He is 3/4 hetero, she's the computer geek who finds info for him. So this is about Philip. Mother and 2 uncles had LOAD, at least 1 died from it. Also, from Promethease: "Increased risk of Alzheimer's disease, consider reducing iron levels. Carriers of the minor alleles for rs1049296 (C2) in the transferrin TF gene and rs1800562 (C282Y) in the HFE gene along with an APOE epsilon 4 genotype were reported to have a risk of late-onset Alzheimer's disease (AD) 37.5 times higher" Not liking this info even though we barely know what it means. P's brother John referred us to this site and you guys are terrific. We are wading in, for better or worse. Right now, P is doing nothing differently health-wise: 56, good shape (runner, but hips are starting to go), physical job, thin. Eats sugar and carbs but not in excess. We haven't gotten any testing done besides the usual. I have sent the 1st 10 pages of Promethease to his Dr. so she's watching iron levels. Anyhow, thanks to all, we'll be around.

Hello Philip and Vicky. Welcome to our site.
Thank you John for referring your brother to our community. I would like to right away point you to our PRIMER:
viewtopic.php?f=33&t=1418
The Primer has been written by our member Dr. Stavia, and it talks about possible prevention strategies you can implement by yourself or with a help of a family member. For example you can find information on: sleep, exercise, stress management, eating a healthier diet, cognitive enhancement, basic supplements, science of APOE allele, and much more.

I would like to add that many members of the community follow Dr. Bredesen's or Dr. Gundry's protocols. Detailed information on the plans you can find in the following books : "The End of Alzheimer's" by Dr. Bredesen and "The Plant Paradox" by Dr. Gundry.

Please do not hesitate to post if you have questions.

Magda

[Magda]

Hello, I'm a 51 year old. My daughter-in-law is getting her Ph.D. in bioinformatics and encouraged me to get tested. I did 23&me and fed the data to Promethease. The primary news was my 4/4 status. I knew I was at risk in a general way based on my uncles who lived long enough to become afflicted. Having this specific information is more concrete. Reading about online communities in the NYT made me want to seek out others learning about their status.

Hello Mezzommomma. We are glad you have joined us.
It must be wonderful to have someone who understands biological data in a close circle, and we feel acknowledged to be referred and recognized by an expert in this field .
As Lucy5 mentioned, the Primer is an excellent place to get started. In addition to the forum you may would like to explore Dr. Bredesen's book: " The End of Alzheimer's" Many members of our community follow his ReCode protocol as well as Dr. Gundry's approach described in "The Planet Paradox".

We are looking to hear more from you.

Be well,
Magda

[wendibart]

Good morning,
What a fantastic site! Until last week, I knew nothing of any of this! I am a type 2 diabetic and my doctor ran a genetic test to see what drugs might work to help me as all my numbers were going the wrong direction (A1C, triglycerides, all cholesterols actually and weight) and I have changed nothing. Anyway, he gave me the full report and I noticed the APOE 3/4 and googled it. Quite a shock, but here I am. So thankful as I was NOT doing the right things and it's no wonder my numbers were going the wrong direction. My grandmother had dementia the last 10 years of her life. Her son (my dad) died at 61 of diabetic complications, so not sure what would have manifested and my extremely healthy looking little brother of 43 died 2 years ago after failed heart surgery. I couldn't understand how this happened. Now I do. I will keep reading and learning. Thank you again for all this information! ~Wendi (I'm 53)