Just to set the record straight...

[Julie G]

Because I continue to receive PMs about my cognitive status, I wanted to take a brief moment to set the record straight. Many of you may have seen the Dec. 8th CNN story about Dr. Bredesen's recent paper http://www.impactaging.com/papers/v6/n9 ... 00690.html and our involvement in extending his research. In that article, I was asked to share my story as I also demonstrated improved cognition after essentially following most components of his protocol.

When the story came out, I was shocked to read that I either had brain scan confirmed Alzheimer's OR genetic testing confirmed Alzheimer's. CNN tried to "correct" the story; hence the two versions. Those of you who've known me for years know neither of these are true. As I revealed to the reporter, I carry two copies of ApoE4 and was exhibiting symptoms of cognitive decline. That's all.

I didn't say anything sooner as my purpose in speaking to CNN was to shine the light on both Dr. Bredesen's research and our website. I didn't want to make it about me For the record, one of patients in Dr. Bredesen's study DID have a scan that was indicative of early Alzheimer's. It just wasn't me.

I wish I could say I am 100% certain I don't have Alzheimer's. I can't. Like many here, I have good days and bad days. I feel sure that some of the changes I've made are helping. I'm doing all I know to do, but I'd be lying if I said I still wasn't scared. I'm not asking for pity; I just wanted to set the record straight.

[TheBrain]

Julie, I'm sorry this error happened! It's good you didn't use your real name. Otherwise, you'd probably be getting even more inquiries about your cognitive status from people from all corners of your life.

[Stavia]

Omg. Journalism can't always he trusted.
Honey I am convinced your previous brain fog was a non - related glucose dysregulation thingy that you have sorted. You are cognitively sharp imo.
Pls dont be scared.
Hugs

[Russ]

Julie, I just want to emphasize Stavia's comment: you are not only cognitively sharp, you are very sharp. I am routinely blown away by your ability to recall and clearly reiterate key points including nuances in an array of studies on wide ranging sub-topics with no previous subject matter training in the field. I have no idea what your 'decline period' looked like, but girl, seems to me you're rocketing into high a cognitive orbit.

[marthaNH]

I am happy to hear that the story was wrong. Of course, I'm sorry that journalists make errors on important topics, but am used to that. Thanks for letting the group know. I appreciate it.

[KatieS]

Julie, you made such a courageous contribution with the CNN interview and describing your personal experience. Now your prevention -focused strategy extends beyond this supportive forum. The public needs to have faces confronting this risk. We are so thankful that you and Max have stepped forward to create this public awareness.

I appreciate your honesty about cognition, knowing you are razor sharp, as some days we all wonder if…

[Gilgamesh]

Julie, like others, I'm so appreciative of your efforts, with the CNN interview and so much more.

For the record, while you may not be certain, I'm certain you do not have AD! I'm not a doctor and shouldn't make a diagnosis on the basis of our (relatively) minimal interaction. Still: I'm certain.

That doesn't mean there's anything strange about being scared. Most of us are. I know I am. I'm sitting here trying to finish a huge writing project, and I keep experiencing the weakness of my working memory -- compared to just 5-6 years ago. I formulate an "expositional trajectory" for the coming paragraph or two, and suddenly it sort of dissolves. Scary. But these cognitive problems usually have causes that are modifiable (in my case, likely sleep deprivation). But I'm still scared the Great Decline has begun. But we can fight it. That's why we're here.

Un abrazo
GB

[Julie G]

Alysson, it WAS hard- even with my thinly veiled pseudonym. I think I literally shook for two days after the story came out. The stigma is ridiculous, but very real. Dr. Bredesen originally asked me to appear on CNN to tell my story Baby-steps for this activist…

Honey I am convinced your previous brain fog was a non - related glucose dysregulation thingy that you have sorted.

Agreed, but I’d be naive to think that the hypoglycemia DIDN’T affect my brain. (I know you’re familiar with the research on E4s/cerebral hypometabolism.) My case was the perfect storm with many components: the severe hypoglycemia, subsequent high cortisol, hypogammaglobulinemia, emerging insulin resistance, unidentified gluten and other food sensitivities, mast cell activation/massive anticholinergics, premature menopause, gut dysbiosis, lowish Vitamin D, methylation defects, etc. All that being said, I am the poster child for WHY a multifactorial approach, like D. Bredesen’s, may be our best bet. With each system that I fixed, my cognition improved

Thank you ALL for your kind words. They mean a lot. I still worry. I know I’m still not 100%, but working on it. Onward.

[LillyBritches]

My dear friend, the record has been set. But I told you that already.

Jul, I parrot everyone else here: ppppffffffttttt. You don't have AD, nor have you ever had it, nor have you/had you the beginnings of a dementia process. I agree 1000% with Doc Stavia: your cognitive challenges were blood glucose related. Once that had been sorted, you bounded back in leaps and intellectual bounds. Truth.

In fact, I'd be utterly shocked to learn that anyone in our group has any current cognitive issues. If writing ability is truly indicative of higher executive functioning, we're all golden at this juncture.

The media. Oy. In the words of the late, great Mr. Capote: "Honey, don't let me commence."

xoxoxo

[JulieAnnie]

Julie, I wouldn't worry too much about your hypoglycemia episodes. The Joslin Diabetes Center has been following a group of Type 1 Diabetics for over 20 years. They have stratified the APOE4's and compared with controls, there doesn't appear to be any cognitive decline in the 4's. Some even think there may be a protective effect on the brain because it forces/trains the brain to use other sources of energy. Just last night I experienced a low of 35 and yet I was still functioning although shakey. I certainly couldn't have done a math work sheet but I did respond to an ongoing Words With Friends game. If these episodes really mattered, I should now, at 61, have AD. But, I can see how being low and not realizing it, could make you feel like your cognition is in decline.

Also, there is a phenomena with young adults who acquire a hearing loss that is similar to what AD worriers experience, a sort of "self fulfilling prophesy". They become so frightened of not being able to hear, telling themselves "I'm not going to be able to hear" and sure enough, they are so stressed that they can't understand speech and it spirals and gets worse the more they think about it. It's a hard habit to kick!

I continue to be in awe of your daily responses and posts!