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

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

Postby circular » Fri Nov 17, 2017 8:32 pm

I thought this was a fabulous article and stood out as taking very seriously the value of what we do here, and its potential for creative, positive disruption of the industry by a growing number of people aware of the profound risk we each personally face. The point that everyone is at high risk can’t be overstated as part of the wake up call. I was also pleased to see air pollution mentioned, my personal theme of the week as I examine my home’s indoor air quality fluctuations with monitors and filters. I don’t think we should leave this stone unturned. So far it seems true that taking a shower trashes the air in my bedroom! But back to the article, that is a gem. There are just too many facets to this topic to cover in one article and I appreciated new angles. I see more TV interviews coming ...
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Re: NYTs: What if you knew Alzheimer's was coming for you?

Postby Tincup » Fri Nov 17, 2017 8:59 pm

Pagan interviewed a number of us. Much more was mentioned by us, but a lot got edited out.
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Re: NYTs: What if you knew Alzheimer's was coming for you?

Postby SusanJ » Fri Nov 17, 2017 9:05 pm

FYI, Julie mentioned on our Facebook post that she did give the Times info about Dr. Bredesen, but it did not make it into the article.

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

Postby circular » Sat Nov 18, 2017 12:42 am

I’m curious how the article came about?
ApoE 3/4 > Thanks in advance for any responses made to my posts.

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

Postby Tincup » Sat Nov 18, 2017 4:44 am

circular wrote:I’m curious how the article came about?


Pagan contacted Julie many months ago. I think Feb?
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Re: NYTs: What if you knew Alzheimer's was coming for you?

Postby TheresaB » Sat Nov 18, 2017 5:05 am

Tincup wrote:
circular wrote:I’m curious how the article came about?


Pagan contacted Julie many months ago. I think Feb?


I know I was interviewed over 6 months ago, Feb sounds about right. The article was put on the back burner, but when Bill Gates contributed to the Alzheimer's cause, this motivated the NYT to dust it off.
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Re: NYTs: What if you knew Alzheimer's was coming for you?

Postby Gilgamesh » Sat Nov 18, 2017 8:36 am

Great article! It even had a tone of advocacy, to some degree -- unusual for the NYT.

buck3Maureen wrote:Disappointed that the article did not mention Dr. Bredesen , his book [...].
Bredesen's work is amazing and the promise of his approach should be trumpeted as widely as possible.

But I think there are advantages to his not always being named in connection with our group. It's good for us -- and even for Bredesen -- if we are perceived as radically independent from any particular approach. I've twice now described our group to people and heard "... oh, the Bredesen group!" (Of course, that we're so widely known under any rubric is wonderful!)

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

Postby Sandra Bender » Sun Nov 19, 2017 2:26 pm

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

Postby Stavia » Sun Nov 19, 2017 2:42 pm

Thanks for your comments Sandra.
If you were working in a field where you needed optimal cognition to be effective and safe, would you tell your colleagues and peers and risk them watching your performance and questioning your decisions more than they would if you hadn't told them?
knowledge of a potential issue can trigger negative bias.

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

Postby slacker » Sun Nov 19, 2017 2:49 pm

Sandra Bender wrote: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.
Sandra Bender


I am an employed medical provider with subjective cognitive decline. In the last year, I have noticed a lessening of my cognitive abilities. My husband sees no difference, but he doesn't work with me. I already wonder if I made a mistake about sharing at work that my brother has Alzheimer's (diagnosed at age 57), and that my crazy diet is part of a prevention protocol. If I openly share my homozygous ApoE4 status, I may be taking a risk of being labelled and monitored more closely for mistakes, overlooked for new assignments, be the first to get the boot with downsizing, etc.

I respect your decision to be open with your status. I respect Julie G for doing the same publicly in front of a national audience. I have shared my status to fellow travelers. But at this point, I'd rather it not be common knowledge or part of my medical record.
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