NYTs: What if you knew Alzheimer's was coming for you?

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Bettylacy
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Re: NYTs: What if you knew Alzheimer's was coming for you?

Post by Bettylacy »

I really enjoyed the NYT article mainly because once again we are out there in the news, as a group and as individuals working together to increase awareness of this terrible disease and the risk that all of us on the planet carry, whether APOE4+ or not. We are all at risk for one of those Bredesen 36 holes. There were many points made that were so important but my fave was :

"We are genetic pioneers, modern-day canaries in the coal mine, searching for and testing out strategies,” reads the group’s website. Rather than seeing themselves as victims of genetic bad luck, Ms. Gregory and her collaborators regard themselves as citizen scientists and activists who may be able to outsmart the disease." Thank-you

I also liked Theresa's point regarding testing (paraphrasing) knowing about one's genes allows you the chance to do something about it. And cracked up at D's point of how genetic testing put her on her bike sweating in the dark early morning hours. Duh- Knowledge brings power and with it choices.

Slacker, I too am a medical provider working to save every neuron I have. I respect your decision to tell who you want, when you want. It is tricky for us that are providers. As Stavia says there can be negative bias if a provider forgets something and might be automatically judged with having memory loss. How can a client or someone who knows not wonder...does this mean my doctor is becoming affected or won't be able to care for me in a qualified way, especially if you've owned having the APOE4 gene? After all, our relationship with our clients is based on caring for them. If we are forgetting things that may jeopardize that care then that needs to be part of the conversation we have with ourselves and our clients. I have thought about this especially when I do forget things, which thankfully is not often but does happen. Since I have been offering APOE=4 testing and am a strong proponent for it and other genetic tests, I am out to most all of my community professional and non professional. The way i see it the more people I have contact with the more feedback, positive or negative becomes possible, and the more education I can do about APOE4 and AD. Disclaimer, I am in private practice and not in a clinic or research situation. My sister who works as a surgical nurse talked about the subject of disclosure in the Boston Globe Stat News article . She is not "out " at her work fearing some might have negative bias towards her. In the NYT article it was mentioned that we need to have more people who are out with AD or MCI or SMI, to help move the research along and the public/scientific dialogue. I look at being "out" as moving that dialogue forward. Finally , I have a great model , my mother who was diagnosed with AD 4 years ago. Around this same time of the year, we sat down to write her annual Christmas letter. In it she spoke about being diagnosed with AD and how this was hard since she valued her work and memory but could no longer fully trust it. It was heartfelt and beautiful. We added the usual decorative red and green embellishments. It was the last Christmas letter she wrote.
APOe 3/4; If you want to go fast go alone. If you want to go far go together. African proverb. :D
Bettylacy
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Re: NYTs: What if you knew Alzheimer's was coming for you?

Post by Bettylacy »

PS THANK-YOU SO MUCH Julie, Pagan, Theresa, "D" and New York Times for helping spread the word.
APOe 3/4; If you want to go fast go alone. If you want to go far go together. African proverb. :D
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Re: NYTs: What if you knew Alzheimer's was coming for you?

Post by Sandra Bender »

I completely respect your decision considering the culture at the moment. I hope the culture will change so you are safe telling people about yourself.
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Re: NYTs: What if you knew Alzheimer's was coming for you?

Post by Kattywomp »

Fantastic article! I've been downing my morning supplements with my lemon water and thinking "baby steps" every day until we know more. Thank you for your contributions and Dr. Bredesen for giving us an early roadmap so we can be active in our drive to do all we can to prevent Alzheimer's.
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Re: NYTs: What if you knew Alzheimer's was coming for you?

Post by Gilgamesh »

An aspect of "coming out" that we don't talk a lot about is the multiple implications for one's family. First, they, like close friends, will be worried about you.

But, in addition, if I come out as 4/4, then I'm simultaneously outing my parents and children as carriers. I'm also outing my siblings as having much higher odds than normal of being carriers.

These are difficult decisions and I have sympathy for the different approaches we've all taken. But, regardless, I would encourage everyone to think carefully about going public.

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Re: NYTs: What if you knew Alzheimer's was coming for you?

Post by Fc1345linville »

Sandra Bender wrote:What does it mean about the social and media climate that Bredesen’s successful work to reverse cognitive decline was omitted from this essay? I think the answer to that question may point to some of our challenges in considering all the options in the treatment of this disorder. For example, was he omitted because he is not aligned with the drug and conventional medicine industry? Because he has not used a control group to prove success? Or did Bredesen decline to be interviewed?
I have been curious about why people on this blog do not use their real names. I do use my name and because of the article, I now understand the risk. I’m retired so I don’t see the risk to me at this moment. I have been telling people in my networks that I have the Alzheimer’s gene and that I am changing my lifestyle to avoid symptoms. I hope to spread the word that people can nurture their brains and bodies. I hope we come to the day in our lifetime when we can all use our own names.
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Sandra, you ask some great questions about the NYTimes decision to omit references to Bredesen, and I doubt that we will get an explanation from the NYT editors. You hit on a few thinks that might be at issue. I am told by a few personal friends in the medical community that omission of an established control group or clinical trials that don't conform to currently accepted clinical research standards would be a likely barrier for many of Bredesen's peers in the traditional medicine community. And when I watched a couple of Dr. Bredesen's videos, while he comes across as very bright and articulate, he also is aggressively marketing and promoting his protocol and his company. Both of those issues raise caution flags for me personally, perhaps for others as well. Is the cart before the horse?

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Re: NYTs: What if you knew Alzheimer's was coming for you?

Post by Julie G »

Alzheimer’s disease appears to be multifactorial in nature. It’s likely not a single "disease", but rather the body’s protective response (beta-amyloid) to a variety of insults; insufficient neuronal fuel, inflammation, toxic exposure, viruses, Lyme disease, mold, insufficient trophic support, etc. As evidenced by the hundreds of failures to date, a monotherapeutic, that can easily be tested with a standard RCT, is extremely unlikely to work for all sufferers of this disease. Indeed, no single pharmaceutical has ever worked to change the trajectory of the disease. Perhaps Dr. Bredesen’s peers should be asking themselves if there is a better way to study this phenomenon? I’m heartened that the Cleveland Clinic thinks evaluating multiple individualized strategies at once (against a control group) is worthwhile. Indeed the movement to trial multiple strategies at once, like the FINGER trial in Finland is gaining traction. The Alzheimer’s Association is launching a U.S. version with the POINTER study. It will be very exciting to see the information that can gleaned from using this type of approach.
And when I watched a couple of Dr. Bredesen's videos, while he comes across as very bright and articulate, he also is aggressively marketing and promoting his protocol and his company.
FC, can you provide an example of this?
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Re: NYTs: What if you knew Alzheimer's was coming for you?

Post by Kenny4/4 »

What a nice article!
Thank you Julie G for your intelligent bravery. It is a personal decision to disclose one's ApoE status. The decision has many risks attached to disclosing or not disclosing it to different people. I tell everybody but that may not be good advice for everybody.

I really liked the analogy they made in the article to HIV testing and how the citizen future AIDS patient helped push for the multi-factorial treatments that work today. Hopefully us apoE4's can push science the same way.
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Re: NYTs: What if you knew Alzheimer's was coming for you?

Post by Tincup »

I tell everyone in my "real" life. I strictly draw the line at things that are online and searchable.

I've always made my living by solving problems. I've faced no issues by disclosing.

I push prevention hard: strict Gundry ApoE4 diet, keto, fasting 22 hours/day on eating days plus 5 consecutive days out of 14, all exercise is fasted, going to the gym with a blood sugar of 31, doing a body weight routine designed to prepare for Navy SEAL selection, keeping my body fat in the first percentile for my age (62) while having a BMI of 24, rock climbing and alpine skiing with those 30 years my junior & etc. Because of this most of my colleagues & friends think I'm much healthier (and cognitively well) than they are. They still come to me with the complex problems they can't solve.

It is kind of an in your face approach. I know I have a risk and this is what I'm doing to mitigate it.

i do recall my mother, who passed with dementia at 87, commenting at 60 she was much slower mentally than she was at 19. This is interesting as she was picking up a second technical degree and setting the curve in all her classes. Yet she was aware her abilities had degraded. Had the information we have from Bredesen, Gundry & etc. been available to her, she would have applied it with gusto.
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Re: NYTs: What if you knew Alzheimer's was coming for you?

Post by Kenny4/4 »

Tincup wrote:
I push prevention hard: strict Gundry ApoE4 diet, keto, fasting 22 hours/day on eating days plus 5 consecutive days out of 14, all exercise is fasted, going to the gym with a blood sugar of 31, doing a body weight routine designed to prepare for Navy SEAL selection, keeping my body fat in the first percentile for my age (62) while having a BMI of 24, rock climbing and alpine skiing with those 30 years my junior & etc. Because of this most of my colleagues & friends think I'm much healthier (and cognitively well) than they are. They still come to me with the complex problems they can't solve.

It is kind of an in your face approach. I know I have a risk and this is what I'm doing to mitigate it.
That is impressive Tincup.
I have some goals to shoot for now.
Am I mistaken or do you fast for 5 days straight?


The AIDS-Alzheimer's analogy in the article really struck a chord as I remember many HIV positive people (pre-antiretroviral drugs) would live as healthy a lifestyle as they could and would live much longer before progressing to AIDS than those who didn't . HIV is also treated with not one drug but a cocktail of many different drugs and a consistant monitoring of their blood work. Sound familiar?
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