Welcome!!!

A primer for newbies and old pros alike.
Deborah
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Re: Welcome!!!

Postby Deborah » Sat Jan 05, 2019 8:59 am

Hi, I am 66 years old and I have one copy of the ApoE4 gene. My mother and maternal grandmother both had Alzheimer's and I am determined to do everything I can to not get it myself. I read Dale Bredesen's book, "The End of Alzheimer's", and I am completely on board with everything he has to say. My cognition is fine right now. My doctor suggested that I try Cerebrolysin, which I had never heard of. It's used in Europe to treat traumatic brain injury and stroke, and it supposedly "calms down" the structures in brain cells that allow the brain to be hurt by whatever is attacking it (toxins, etc.), and prevents brain cell death. Has anyone here used it? I am anxious to get more information before I try it.

Thank you so much for providing this platform! I am looking forward to learning more.

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Re: Welcome!!!

Postby NF52 » Sun Jan 06, 2019 9:59 am

Deborah wrote:Hi, I am 66 years old and I have one copy of the ApoE4 gene.
Welcome, Deborah!
I am also 66, have two copies of ApoE4, and a family history of dementia, so we probably have a lot in common!
Here’s some good news: it sounds like you have an active brain that has a keen desire to keep learning —and 66 years of doing just that. In many ways, you and I have probably led healthier lives than our parents did. I know that both of my parents had heart and vascular issues that were not recognized until too late. In addition, you and I may have had more years of education and more years of working at jobs that required new learning and problem-solving. That creates “cognitive reserves”, the ability of the brain to be both resistant to brain pathology and resilient to its effects.

One study (which I can pull up when I’m at my computer) suggested that cognitive reserve delays the onset of even mild cognitive impairment by 8 years over those who haven’t had the benefit of higher education and lifelong learning.
Now to your question about Cerebrolysin. A quick search of Google and Clinical trials.gov led me to only one current trial of this drug, for pre-term infants in Egypt, apparently to try to support their vascular health. One previous trial was also for infants who had experienced hypoxia (low oxygen) or ischemia (blood clots). It finished in 2013, but had no published results. That’s usually a sign that the results didn’t show any benefit that met statistical standards.
And here’s what would keep me, personally, from ever trying this: it’s made from pig brains, and other animal substances. Given that Creutzfeldt-Jacob-Disease—better known as Mad Cow Disease—comes from people eating animals that have themselves eaten the brains of infected sheep, I don’t trust putting a product that has come from pig brains in me.
From what I read, this isn’t used in “Europe” but rather in Russia, some Eastern European countries and China.
I don’t see any way that you would know what you are getting is even the same compound as was studied.
I’d encourage you to look at our Primer, which you can find a link to on the Welcome page. Stavia, its author, is a doctor and also 4/4 and has wonderful advice about how to prioritize areas that make sense for you, how to balance concern with joy in living, and how to consider evidence of new treatments.
It took me a couple of years before I began to really believe that my parents’ fate did not have to be my own. I think the more we learn on the site and on our own,the easier that is.
So with hopes that this will be a year of both learning and joy for you, know that you always have an APOE4 family here.
Last edited by NF52 on Mon Jan 07, 2019 9:02 am, edited 1 time in total.
4/4 and still an optimist!

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Re: Welcome!!!

Postby CoachJD » Sun Jan 06, 2019 10:20 am

Let me also welcome you, Deborah, to this wonderful, hopeful and helpful community! You've certainly found a tremendous resource to support you on your journey. I want to reiterate what NF52 states about avoiding any supplement that isn't proven to be helpful and could instead be harmful. There are so many other sound dietary and nutritional changes you can make to support brain and overall health, but I agree that this doesn't appear to be one of them!

I want to compliment you on your optimism and courage to do everything you can to change your future! While I don't have the same ApoE status as you do, I'm your age and have similar concerns. Unfortunately, I never knew much about any of my grandparents, and both of my parents died young with no signs of cognitive decline. But like you and so many others in our community, I'm fighting the good fight anyway! Please continue to reach out to us with questions and concerns, as we are here for you and anxious to help. Stay well and Happy New Year.
Joan Dickason, FMCHC
National Board Certified- Health and Wellness Coach
Reversing Cognitive Decline For Coaches, CertificationPending Fall 2018
"Pain is inevitable. Suffering is optional " Haruki Muraka

Fran
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Re: Welcome!!!

Postby Fran » Thu Jan 10, 2019 2:41 pm

Hi all, and thank you in advance for any help or support you can give me.
I am here to get information for my mother. She is 78 and presents symptoms of cognitive decline, diagnosed on the base of tests and visits. The Doctor prescribed her donepezil, Alzheimer's usual treatment and the next visit after 6 months.
I am really worried waiting for 6 month only with a pill and without other forms of therapy. I have just read the Bredeson's book and I would like my mother to join the RECODE protocol, even if I know that in Italy (we live in Italy) there is not any practitioner and our family doctor is quite skeptical about the "still not admitted" therapies.
Maybe it is possible to have a practitioner that follow us by Skype calls or something similar? My mother does not speak English, but more or less I am able to do it, even with all the difficulties that you can understand also reading this message.
In the meantime I am looking for a laboratory where I can get all the analysis listed in Bredeson's book (it is not so easy in Italy)
Any advise or recommendation is really welcome
thank you again, this website is really a great support.
fran

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Re: Welcome!!!

Postby Chameleon » Thu Jan 10, 2019 5:44 pm

Hi Fran!

Welcome to the APOE4 website! I am glad you found us.

I am sorry to hear about your mother, but she is lucky to have you for an advocate. It is disheartening by how little conventional medicine has to offer. In my opinion, the Bredesen Protocol is not really "out there", it is simply optimizing someone's health. Not an odd goal and one every doctor should be striving for for their patients.

I do know there are some practitioners who do remote appointments. I would check the APOE4 Aware Practitioners on this site.

For labs you might want to check the AHNP website as they are affiliated with Dr. Bredesen. One of their packages includes access to Bredesen trained practitioner list as well as a set of labs with a ReCODE report. Here is a link: https://www.ahnphealth.com/recode.html. There are other direct to consumer labs listed on this site. Here is a link to that: Direct To Consumer Labs

And if you have any more questions just let us know. Good luck!

Fran
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Re: Welcome!!!

Postby Fran » Fri Jan 11, 2019 8:05 am

Dear Chameleon,
really thank your for your so quick answer and for the welcome. I will follow your suggestions and hope to achieve some results.
all the best
Fran

jasmine4ever24
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New and scared

Postby jasmine4ever24 » Tue Jan 15, 2019 1:58 pm

Hello

I am here to redo my lifestyle and try to live healthier since I had a grandparent with alhezimers and now I found out I carry the e4 as well. Watching them go through the entire process and the rapid change always scarred me .Even though I am young my life seems so limited now. The things I wanted to do later in life like have kids now I am thinking of speeding up the timeline since I have this trait . I don’t know how to begin but I know it’s diet I’m just not sure how . Please help I’m devastated.
Sincerely,

Jasmine F.

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Re: New and scared

Postby NF52 » Tue Jan 15, 2019 6:05 pm

jasmine4ever24 wrote:Hello

I am here to redo my lifestyle and try to live healthier since I had a grandparent with alhezimers and now I found out I carry the e4 as well. Watching them go through the entire process and the rapid change always scarred me .Even though I am young my life seems so limited now. The things I wanted to do later in life like have kids now I am thinking of speeding up the timeline since I have this trait . I don’t know how to begin but I know it’s diet I’m just not sure how . Please help I’m devastated.
Welcome, Jasmine!
I'm so glad you reached out to join us in the midst of what probably feels like getting caught up in a tsunami of emotions. No one can tell you what the future brings, yet we can give some tools to make the journey be under your control. So let me first start by offering some perspective.

I'm guessing you're either 24 now or fairly close to that; it's a great age! (I once had a bad allergic reaction to penicillin when I was 33 and when the ER nurse asked my age I said "28; no 33!" to which she replied sourly, "which is it?") My feeling, at the ripe old of 66, is that we should all get to decide our "forever age", regardless of how old our calendar age is.

At the age of 66, with two copies of ApoE 4, I can assure you that I am living a happy, healthy life and have no reason to think I won't continue to do so for a long time. I didn't "speed up the timelines" of my life. I had my first child at almost 30 and my last at age 37. I had a rewarding and challenging career, then "retired" and commuted 6 hours each way during the week to spend the next year back in grad school. My husband and I travel more than we ever did when we were young. I was technically "obese" for many years, although I didn't feel that way and doctors back then didn't pressure women to lose weight, or even worry about checking for heart disease or cholesterol. Yet once I retired I was able to lose some weight and my current "cardiac age" on a coronary scan is "39'. So don't ignore diet, but don't decide that you have to throw over everything all at once.

And I'm not an outlier. I know of ApoE 4/4 women who are playing better golf and bridge at my age than they did in their 40's; women who in their 60's ran non-profits and organized relief efforts for refugees, women who took on the care of relatives like your grandfather and still managed to find time to care for themselves and their families.

Here's why you shouldn't worry so much about Alzheimers: Your grandfather was probably more than 50 years older than you when he developed Alzheimer's. If we reached back 50 years ago, everyone in January 1969 could say "No one has landed on the moon and safely come home. " Yet 6 months later, in July 1969, Neil Armstrong did exactly that. The science necessary to make "a giant step for mankind" came out of decades of work. And the science of understanding Alzheimer's and especially the major risk factors for Alzheimer's (very high BMI, untreated high blood pressure, smoking, heavy drinking, lack of access to health care, exposure to toxic chemicals, heavy pollution and contaminated water supplies--and lack of education, social networks, adequate nutrition and sleep, management of stress---all these things are now known--and were not when you grandfather developed this disease.

The latest large analysis of large populations (not just people who are diagnosed with Alzheimer's), found that someone with ApoE 3/4 (which I am guessing you have?) has only a 20-25% chance of developing either mild cognitive impairment or Alzheimer's by the age of 85--provided she is now between 60-75. And for someone like me, with ApoE 4/4, my risk is only 30-60%. That means that I have a 40-70% chance of having a perfectly health brain if I live to 85, which is about how long my mother and her sisters lived. Life for you and my three children (ages 29-36) will have so many more ways to build cognitive reserve, brain resilience, and resistance to the effects of ApoE 4 than you grandfather's generation had.

So, sweet Jasmine, let me point you to a few tools, and suggest you give yourself plenty of time to absorb this news before you make any big changes. Check out our PRIMER, written by Stavia, a kind and wide doctor who is herself ApoE 4/4--and who still eats dark chocolate and pastries once in a while! And also take a look at the "How-To" Get the most out of the ApoE4.info website
Please keep posting and let us know what is your passion, your dreams and what you hope for in the next months and years: Those are the plans you should focus on now. Be well, my young friend.
Last edited by NF52 on Tue Jan 22, 2019 2:22 pm, edited 1 time in total.
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Re: New and scared

Postby GLS18 » Tue Jan 15, 2019 6:10 pm

jasmine4ever24 wrote:Hello

I am here to redo my lifestyle and try to live healthier since I had a grandparent with alhezimers and now I found out I carry the e4 as well. Watching them go through the entire process and the rapid change always scarred me .Even though I am young my life seems so limited now. The things I wanted to do later in life like have kids now I am thinking of speeding up the timeline since I have this trait . I don’t know how to begin but I know it’s diet I’m just not sure how . Please help I’m devastated.


Hi & A Very Warm Welcome Jasmine!

Thank you for your openness and honesty. It takes a great deal of courage to share your feelings and take steps to change your lifestyle. My heart goes out to you and I’m sending a big hug your way. It is normal to feel scared when witnessing a loved one go through stages of cognitive decline and learning the news of your own ApoE4 status. Many of us have been through similar situations and you have come to the right place. We are here to support you.

“The journey of a thousand miles begins with one step.” Lao Tzu
You have already taken positive steps by getting tested and reaching out to our community. That is fantastic! As you move forward on your journey, always remember that you are in charge of your health and genes only account for 25%. Whether or not your genes are expressed depends on lifestyle factors such as diet, nutrition, sleep, relaxation, stress, exercise/movement, relationships and toxin exposure. This means you have control of over 75% of the picture. As you are young, you have many years to work on prevention and you may never exhibit symptoms of cognitive decline. You are opening the door to many possibilities and not a condensed timeline.

How about beginning with Dr. Bredesen’s book, The End Of Alzheimer’s? There is also a wealth of resources on this site to empower you. In addition to the community forums, the Primer is a road map to understanding all you can about the APOE gene. It is beautifully compiled by Stavia, a physician and fellow E4/E4. To navigate the site more effectively and discover research and topics of interest, The How To Get The Most Out Of The ApoE4.Info Website will be your guide.

If you have questions or could use some support, please connect with us. You are not alone on your journey. As you begin to review the resources, you may also want to consider partnering with a physician and/or coach trained in the field of cognitive decline to provide further support. Here is a link to Searching For a Healthcare Practitioner.

Again, a warm welcome and another big hug:)
Gina
Functional Medicine Certified Health Coach
Reversing Cognitive Decline For Coaches Certification Candidate, Fall 2018
"Live as if you were to die tomorrow. Learn as if you were to live forever." - Mahatma Gandhi

jasmine4ever24
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Re: Welcome!!!

Postby jasmine4ever24 » Tue Jan 15, 2019 9:15 pm

Thank you ! I will try to learn everything I can here your kind words mean a lot
Sincerely,

Jasmine F.


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