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Questions......I don't know where to start!

Posted: Mon Feb 12, 2018 3:30 pm
by Valerie001
We've just gotten a report with new genetic information on my husband. We already knew he has Leiden & MTHFR mutations but now are finding out he also has APOE 3 & 4. I don't know what all of this means other than he's at an increased risk of developing Alzheimer's in addition to thrombosis. He's already had an ocular stroke (at 54) and is on blood thinners and folic acid. I would greatly appreciate some help in trying to understand what this means and what we can do to help his brain stay healthy! I'm so glad I found this forum and I look forward to exploring it more. Thank you!!

Re: Questions......I don't know where to start!

Posted: Mon Feb 12, 2018 5:12 pm
by Karengo
Hello Valerie001! Welcome to our site! We're happy you're here and found this community. Sounds like you're both coming to terms with the news. Please remember it can be a bit of a shock to discover your husband is 3/4 and give yourselves some time to allow things to sink in properly. I understand you have a lot of questions and don't know where to start. Sounds like landing here is a great place for you to start! One thing I would like to invite you to do is check out the Primer which you can find in the Welcome section or here's a link (hope it works!) viewtopic.php?f=33&t=1418. This can help you go deeper with understanding what this result may mean and help you to make a start on figuring out things you can do towards improving health. Please take heart and stay positive. You'll find there are a number of interventions ranging from lifestyle and dietary changes as well as nutritional supplements that can help to strengthen and support your husband's health. Other members of this community have a lot of experience and expertise that they are happy to share with you. Please feel free to keep asking questions! As you will see, the community is well informed and generous with sharing what they know. I trust you and your husband will find the support you need.

Re: Questions......I don't know where to start!

Posted: Mon Feb 12, 2018 5:35 pm
by SusanJ
Hi Valerie001, and happy you found your way here. The Primer that Karengo mentioned is a great place to start to understand what it all means.

Valerie001 wrote:We already knew he has Leiden & MTHFR..
.

One small thing. I also have MTHFR variants and my doctor, at the time i found out, recommended methylfolate instead of folic acid. MTHFR variants can make it hard to convert the folic acid to the active form, while methylfolate is the active form. You might discuss that with your doctor and see if the switch will work better.

Re: Questions......I don't know where to start!

Posted: Tue Feb 13, 2018 10:57 am
by Fiver
Hi. I sometimes remind myself of the Taoist quote: “One disease, long life; No disease, short life.” I guess the idea is that after one illness we all pay more attention to our health, and take some control of it. Your post made me think of that.

Re: Questions......I don't know where to start!

Posted: Tue Feb 13, 2018 6:36 pm
by Jan
Valerie001 wrote:... I would greatly appreciate some help in trying to understand what this means and what we can do to help his brain stay healthy! I'm so glad I found this forum and I look forward to exploring it more. Thank you!!

Valerie001, I applaud your desire to learn and understand. I always feel empowered when I increase my knowledge about a problem. There is a great deal of information contained in the multitudinous threads within the site, and luckily it's all searchable. In case you haven't discovered it, our site search engine is the three stacked squares on the right hand side at the top of each page. Here are hits for 'leiden.'
search.php?keywords=leiden&terms=all&author=&sc=1&sf=all&sr=posts&sk=t&sd=d&st=0&ch=300&t=0&submit=Search

Re: Questions......I don't know where to start!

Posted: Fri Feb 16, 2018 9:26 pm
by LuckyLyndi
I too don't know where to start, In October 2017 I received my 23andme results. I have a thirst for knowledge and wanted to know which country my family came from as well as our shared genetics. My Ancestry surprised me a bit, but my ApoE4/4 made me curious. Of course as a lay person I really didn't know how this would impact me when I first got the results. My primary care doctor said genetically it wasn't so bad. On Nov 1st 2018 I was a Costco and picked up Dr. Bredesen's book " The End of Alzheimer's" .
Wow, this is what introduced me to what I believe is my new life journey , I have always believed knowledge is power!!

I am Lucky Lyndi, everyone since I can remember has called me that, how lucky for me just a few days after I discovered my ApoE4/4 Dr. Bredesen's " The End of Alzheimer's" was published and I happened upon it.

So now, how to deal with reality and personal power, I am inspired and thankful for all your stories. I am humbled by your credentials and personal stories. I am also scared and afraid to tell those closest to me about my new found reality.

So, I want to be part of our journey together, working hard to find enough self love to follow the protocol.

Re: Questions......I don't know where to start!

Posted: Sat Feb 17, 2018 5:08 am
by slacker
LuckyLyndi wrote:I too don't know where to start


Welcome LL!

It's great that you found Dr Bredesen's book early on. It is a wealth of information, but still somewhat overwhelming for many. Our primer, written by one of our MD members, is still quite rich in information, but breaks things down in smaller chunks. It is very compatible with the Bredesen approach, but not identical. It sounds like you aren't having cognitive difficulties now, so you have plenty of time to get on board. If you are young, even more time to slowly make changes.

When we want to make a lot of changes, it can help to focus on a few at a time, prioritizing on what we think will be easiest to accomplish, or what we think would be most helpful. Success can build on success, making progress towards our goals over time. Take a look at the recommended lifestyle steps - nutrition, exercise, stress management, and sleep - and see which individual items you want to take on now.

One of our new members, drae, has a great attitude towards moving forward with all these moving parts, a few at a time. I think you will find her posts helpful and inspirational. I know I do!

Re: Questions......I don't know where to start!

Posted: Sat Feb 17, 2018 5:23 am
by Jan
LuckyLyndi wrote:... how lucky for me ...

Hi, LuckyLyndi, welcome! Four little words, but they tell me much about your positive mindset, and that you are really lucky to have. Knowledge is power, and I think you've already found that we constantly - and deliberately - share knowledge on this site.

Whether to tell close friends and family is a decision that can wait a bit. And as to where to start, I wonder if you've come across our site Primer ? It was written by physician member Stavia, and gives a very balanced overview of relevant topics.

Do you have specific questions about diet, exercise, relaxation?

Re: Questions......I don't know where to start!

Posted: Sat Feb 17, 2018 9:21 am
by KellyS
Good Saturday to all of you! To Valerie and Lyndi, I think that you will both be so impressed with this site. Everyone here is very supportive and friendly, and the knowledge base is outstanding. The Primer was the first thing that I read when I got on here, and it is amazing. Good luck to both of you in your journey, and know that you are in the right place here!

KellyS

Re: Questions......I don't know where to start!

Posted: Sat Feb 17, 2018 10:18 am
by LuckyLyndi
Thank you Slacker, Jan and KellyS for your quick and supportive response. I will take a deep dive into the primer.
I find stepping out into unknown territory is always easier with a support team and am thrilled to have each of you as well as the other members of this group! How Lucky for all of us!! LL