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I've had a reversal of cognitive decline...and want to share what I've learned...

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
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I've had a reversal of cognitive decline...and want to share what I've learned...

Postby colorful » Wed May 04, 2016 12:20 pm

Hello! Thank you so much for this amazing website. I am so grateful for all of the information, and for knowing that there are so many others out there like me. It is really nice not to feel alone!

I wanted to share my story because I have experienced a significant reversal of cognitive decline. Dr. Bredesen, with his protocol, saved my life. In gratitude, I want to share what happened to me with the hope that it might be of some help to others.

I am a 49-year old former family lawyer, in addition to actor, director and producer of theater. I am also a mother of four children. My father, age 77, a former neurologist, has late-stage Alzheimer’s, and was diagnosed at 67. His mother, (my grandmother), also suffered from Alzheimer’s. She was diagnosed in her late 60’s too.

By experiencing a reversal of cognitive decline, I can now identify what were, at least for me, early warning signs of dementia. I had these signs. My father before me had these signs. None of us realized that they were anything more than aging. Moreover, these early warning signs, or early changes, came on so gradually that I never realized what was happening to me. I just couldn’t see it clearly. Dementia is very insidious that way. It comes on slowly, and by the time the signs are significant, the mind is often too weary to recognize them.

Starting around the age of 40, and over the next 8 years, I developed a progressive difficulty recognizing faces, and was frequently confused about whether or not I had met people before. I rationalized that I just had a quirky mental weakness. I also started to experience a growing mental fatigue, especially after 3 or 4 pm. I (mistakenly) thought I was just very tired. Helping my kids with homework felt exhausting. In addition, I began to feel sometimes "fuzzy" when I was in meetings, having little to add to discussions, particularly meetings held at the end of the day. All of this was upsetting to me because I had always prided myself in being a fairly sharp and analytical thinker. But that clarity was slowly, subtly, ebbing away.

As I got into my mid/late-40’s, I noticed that I was losing my interest in reading (although I’d been an avid reader all my life), in part because I often had trouble remembering what I had read, and in part because some material seemed too complex. Complicated movies felt hard to follow. I could no longer write or edit with ease and clarity. What I didn’t realize then, but now see in hindsight, was that my vocabulary had shrunk considerably, my typing speed had slowed markedly, and my driving had become anxiety-provoking and uncomfortable.

I also started to search for words, and sometimes even used wrong words entirely, such as: calling out to the toll booth operator “conference call” instead of “carpool”, for example; or calling for my dog in the back yard using the word “chili”, what I was cooking for dinner, instead of her name. My kids and I laughed when I did things like that, but inside, I was scared.

I also started missing, or almost missing, appointments- something I had rarely, if ever, done before. I rationalized that I was just a very busy person. But as a result, I became increasingly anxious about keeping track of my schedule, relying ever more on various calendars and alarms to keep me on top of things. During these years, I developed difficulty sleeping, and was frustrated that coffee no longer seemed to help me to become alert in the mornings.

Also during my mid/late 40’s, I began to have trouble remembering what I needed to do in a day. When my kids needed something, I would ask them to write down their requests on a big piece of paper in my kitchen. If they didn’t use that paper, it didn’t get done. I told them it was just so hard to remember things because there was “too much going on.”

To others, it seemed like I was carrying on “normally”. To me, though, it felt otherwise. Life felt overwhelming. I felt I was aging so fast. And by the age of 48, I privately knew that professionally, I was- at best- in decline, and -at worst- finished. I just wasn’t telling anyone.

Last year, at age 48, I contacted the Dementia Prevention Center at Weill-Cornell in New York City because I wanted to “prevent” following in my father’s footsteps. The Prevention Center put me through a battery of cognitive tests (approximately 3 hours long), which felt- to my surprise- very difficult. I scored average or below average on most of the tests, well below what was expected but not so badly to sound any alarms. They also did some blood work on me, and it was from them that I learned that I was Apoe4 positive (I am E2/E4). They told me about the cognitive benefits of the MIND diet and exercise, and asked that I come back in 6 months.

Learning I was ApoE4 terrified me. I wasn’t sure where to turn, but I wanted help. That was when a family member sent me Dr. Bredesen’s paper “Reversing Alzheimer’s”, and from there everything changed. I started to follow the protocol: exercise, sleep, diet, fasting, supplements, stress reduction, and mental stimulation. I had absolutely no expectation of experiencing improvements, because I had not yet connected the dots about my cognitive changes. As a result, when the changes came (which they did with a vengeance), I was completely taken by surprise.

Fast forward three months. July. In the middle of an exercise class one day, I looked around and suddenly realized that I actually recognized some people. Even more, I knew that I knew them. I had never had that feeling in that class before. In fact, I usually felt embarrassed to say hello to others because I was never certain that I knew them.

Fast forward another two months. September. I attended “Parent’s Day” at my kids’ school. That day was typically anxiety-provoking for me because I wasn’t sure who people were or whether I should know them (unless they put on a name tag). This time, though, I actually had fun. I not only recognized people, but I knew that I knew them and enjoyed going up to people and engaging in conversation.

Fast forward another month. October. My True Awakening. Over a period of 4-6 weeks, other changes came on, one after another. Literally from one day to the next, it felt like I was waking up further, like a fog was peeling off my brain. I began to feel mentally much sharper. I became much more alert in meetings and in conversations. My reading comprehension and recollection greatly improved. I suddenly really wanted to read again; I wanted to learn. Then one day I noticed that I was using words I hadn’t used in years. I hadn’t been missing those words, because I hadn't noticed that they were out-of-circulation. But when they returned, I felt joyous! It was like seeing long-lost friends again after years of separation.

Also during that time, my “4:00 fatigue” dissipated. Prior to that, I had dreaded the time from 4-10 pm when my kids needed me most, but when my mind was just too tired. Suddenly (and truly it felt sudden) I was mentally alert up until bedtime. Homework help? No problem! Late night run to the supermarket? Sure! I realized then that the “4:00 fatigue” had come on so slowly, so insidiously, that I hadn’t recognized it for what it was: the creeping in of dementia.

My memory started to improve then too. I no longer needed my kids to leave me those reminder notes on big pieces of paper in the kitchen. I kept track of my schedule again, often in my head. Likewise, I felt more in control and confident when driving. A calm set in. I began to enjoy lengthy, complex conversations, and complicated movies. I even noticed that when I drank coffee in the mornings, I actually felt the caffeine effect again.

One day around that time, I sat down to write something and noticed two things. One, I could type really fast. I hadn’t realized I had slowed down so much, but suddenly my fingers were flying across the keyboard. And two, I found that I actually could write. I had ideas. And they were flowing.

That was when I knew I was back.

Shortly thereafter, in early December, I repeated the three-hour battery of cognitive tests. Many of my scores had jumped from average or below average to the top percentiles. The neurologist who administered the tests told me that, given the dramatic improvement, he could say that while previously I’d been in early cognitive decline, I had definitely fully resolved.

Since that time, I have continued on Dr. Bredesen’s protocol. I have also continued to experience other, albeit more subtle, improvements in my cognitive functioning. On reflection, I can now see that what I, and my father before me, faced mid-life were very clear, early warning signs of dementia: increasing facial “blindness”; “4:00 fatigue”; anxiety about schedules and appointments (and sometimes missing them); gradual loss of interest in reading, movies, complex conversations; gradual decreasing clarity and thinking speed; gradual decrease in vocabulary; intermittent word search problems; slip-ups with language; anxiety about driving; difficulty remembering “to do’s, and sleep disruption. There was a pattern there. I just hadn’t seen it.

In my case, I know I got lucky, very, very lucky. I happened upon a prevention center thanks to my mother. They convinced me to get genetic testing, despite my strong reservations. And then, in the name of prevention, I started Dr. Bredesen’s protocol. Little did I know that what I really needed was treatment.

I also know I am lucky because my beautiful husband has been supporting me completely. He cheers me on. He exercises with me. And he helps me stay the course with my diet, my fast, and with my sleep, none of which are always easy. I am grateful to him every single day.

And finally, I feel lucky because now I appreciate what it means to think clearly unlike I ever did. It’s so awesome! And it is so, so wonderful to be here, and to be able to be really truly present with my children, my husband, my family and friends. Really, when you think about it, what’s better than that?

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Re: I've had a reversal of cognitive decline...and want to share what I've learned...

Postby cdamaden » Wed May 04, 2016 12:59 pm

Thank you so much for sharing your personal story! It is truly inspiring.

Can you share some of the details of Dr. Bredesen's protocol for your case? I think we have the outlines based on his paper but any particular details would be appreciated.
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Re: I've had a reversal of cognitive decline...and want to share what I've learned...

Postby MarcR » Wed May 04, 2016 1:17 pm

This may be my favorite post of all that I have read here - brought me to tears. Congratulations on your recovery, and thank you so much for sharing your story. And what an auspicious first post!

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Re: I've had a reversal of cognitive decline...and want to share what I've learned...

Postby marthaNH » Wed May 04, 2016 1:51 pm

I am so grateful that you have joined us. What a great story. Congratulations. We'd all like to hear more, in as much detail as you can provide. Believe me, we eat this stuff up with a spoon.

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Re: I've had a reversal of cognitive decline...and want to share what I've learned...

Postby KatieS » Wed May 04, 2016 1:59 pm

Definitely Colorful's post elicits strong emotional responses since you so perfectly describe the anxiety associated with decline plus having experienced this in your family.
My late afternoon fatigue resolved with sleep apnea treatment which is wisely included on Dr. Bredesen's protocol. So interested in hearing how your dietary changes, specific supplements, exercise routines, etc... created this reversal.

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Re: I've had a reversal of cognitive decline...and want to share what I've learned...

Postby Julie G » Wed May 04, 2016 2:27 pm

Welcome Colorful! Your story has also moved me to tears. Thank you for sharing. I can (frighteningly) relate to so much of what you've experienced, but I lack the excellent documentation you have of your improvement. Would you mind sharing a percentile score for your pre & post testing? Also, what did the Cornell physician think about your improvement? Like everyone else, I'd love as much detail as you're willing to share about the strategies you've employed. You are an inspiration. XO

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Re: I've had a reversal of cognitive decline...and want to share what I've learned...

Postby Starfish77 » Wed May 04, 2016 3:47 pm

You are such an inspiration. You did such an outstanding job explaining your difficulties and recovery. I too would like to know the details of the changes that you adopted from the Bresden plan. I'm sure there are people all over the country, all over the world for that matter, that are so happy to have you as an example that we can create verifiable positive outcomes with life style changes. We are so happy to have you with us.

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Re: I've had a reversal of cognitive decline...and want to share what I've learned...

Postby ABrain4Me » Wed May 04, 2016 4:41 pm

What an amazing story. Would be very interested in whether you did Dr B's protocol with or without HRT. Also interested in other details of your diet, supplements etc. Thank you so much for posting your story!

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Re: I've had a reversal of cognitive decline...and want to share what I've learned...

Postby circular » Wed May 04, 2016 6:40 pm

Thank you colorful. Question: Did your fuzzy mind wax and wane, by hours, days, weeks or months? A lot of conditions are associated with 'brain fog'. I have some of these conditions, but I also have e4 and the susceptibilities that go with it. Most or all of these e4 susceptibilities are probably magnified by the other conditions. This makes it hard to know when brain fog is related specifically to what you're describing as early cognitive decline, and when it's more directly related to conditions that may feed into the cognitive decline process. I'm not sure this makes sense as it's all inter-related. I'm sometimes concerned my brain fog (BTW I'm 53 female) is an early warning sign of AD related cognitive decline. Though I don't have issues with faces I do have reading issues when it's bad, and writing issues when really bad. But some days and periods it's much better and I feel cognitively normal. So for me it waxes and wanes, depending on whatever, probably multiple variables given my multiple health issues. Because of the waxing and waning I've thought my brain fog is primarily related to these other health issues which also wax and wane. Either way I have to solve all this, but I'm interested in whether your fuzzy mind waxed and waned between fuzzy and clear.
ApoE 3/4 > Thanks in advance for any responses made to my posts.

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Re: I've had a reversal of cognitive decline...and want to share what I've learned...

Postby SusanJ » Wed May 04, 2016 6:46 pm

Colorful, what an awesome, heart-inspiring story! Hugs and many kudos for your hard work!

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