The first survivors of Alzheimer's How patients recovered life and hope in their own words

Dale E. Bredesen

Book - 2021

"First person stories of patients who recovered from Alzheimer's Disease--and how they did it"--

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2nd Floor 616.8311/Bredesen Due Oct 24, 2024
Subjects
Genres
Personal Narrative
Personal narratives
Published
New York : Avery, an imprint of Penguin Random House [2021]
Language
English
Main Author
Dale E. Bredesen (author)
Physical Description
xxvi, 244 pages : illustrations ; 21 cm
Bibliography
Includes bibliographical references (pages [225]-231) and index.
ISBN
9780593192429
9780593192436
  • Introduction: Lost in Translation
  • Part 1. It Tolls for Thee No More: The First Survivors Tell Their Own Stories
  • Chapter 1. Kristin's Story: Zero Is Far from Nothing
  • Chapter 2. Deborah's Story: My Father's Daughter
  • Chapter 3. Edward's Story: Outdistancing Alzheimer's
  • Chapter 4. Marcy's Story: Disaster Relief
  • Chapter 5. Sally's Story: A Failed Trial
  • Chapter 6. Frank's Story: Senor Moments
  • Chapter 7. Julie's Story: Good Luck with That
  • Part 2. Toward a World of Survivors
  • Chapter 8. Questions and Pushback: Resistance Training
  • Chapter 9. Misconceptions and Misperceptions: Digging In Our Heals
  • Chapter 10. Quantified Self and the Reversai of Cognitive Decline
  • Chapter 11. Adaptation, Application: Might Other Diseases Respond?
  • Chapter 12. Gums, Germs, and Steal: A Pandemic Twofer
  • Chapter 13. Enhancing "Normal" Cognition: Be All You Can Be
  • Chapter 14. The Revolution Will Not Be Televised (or Reimbursed)
  • Acknowledgments
  • Notes
  • Index

Kristin's Story: Zero is Far From Nothing The Buck Institute for Research on Aging sits high on a hill overlooking the rolling landscape of beautiful Marin County, north of San Francisco. I was nervous. I had no idea of the challenging journey that lay ahead, but I was eager to try anything that would stop the progression of the disease. The receptionist directed me to Dr. Bredesen's office. I carried a small notebook because I knew I would forget anything that I didn't write down. I listened intently to Dr. Bredesen as he enthusiastically described his research--work he had dedicated his life to for over thirty years. He asked me about my situation and why I'd come to see him. Time flew by. We talked for hours while he described his theory and the background leading up to his recent discoveries. I understand it now, but at that time my brain was too damaged to process the information. But Dr. Bredesen's simple analogy of the damaged brain being comparable to a leaky roof with thirty-six holes that needed to be plugged one by one made sense. He explained that Alzheimer's is not one disease manifestation that a drug can fix but is rather a combination of numerous factors that have gone wrong. Most of the issues he described applied to me, some of which I was not aware of at that time. I told Dr. Bredesen that I was committed to following whatever he recommended. I knew he was my only hope. I left his office with a fire in my belly, determined to let nothing stand in my way of following the protocol. I was more than ready to get started. At that time, I did not fully comprehend that I was the first patient to test his protocol. I have come to appreciate being known as Patient Zero. As other patients went on the protocol, our group grew to ten. Nine of us were able to reverse cognitive impairment. A truly remarkable success given that until then no treatment had reversed cognitive decline in Alzheimer's disease. With Dr. Bredesen's protocol in hand, and his assurance that he would be there for me, telling me I could reach out to him as I needed to, I returned home feeling optimistic. I was passionately committed to strict compliance, with no exceptions. I visited my doctor, explained the protocol, and asked her to order the tests Dr. Bredesen recommended. I cleared out most of the food in my kitchen to make room for a new eating regimen. I bought supplements and started buying organic food. I started exercising more, at first three times a week at the gym. Then I rediscovered yoga, motivated at first as a means of decreasing stress and increasing sleep. I became a certified yoga instructor and a yoga therapist. A daily yoga practice is essential for me to maintain a healthy brain. Changing lifelong poor sleep habits proved to be very difficult. Even as a child I didn't sleep enough. I went to bed late, woke up early, and often had nightmares that interrupted my sleep. It was to be one of my biggest challenges of the protocol--patching up the "insufficient sleep hole in my leaky roof." I usually had no trouble falling asleep but would wake up after just a few hours and stay awake for the rest of the night. I was more exhausted in the morning than when I went to bed. After going on the protocol, it took me over a year to begin to enjoy a full night's sleep of 7 to 7.5 hours. I learned that the brain cleanses itself of toxins during sleep and only during optimum sleep cycles. I had cheated my brain of that period of cleansing for most of my life. I put a lot of effort into improving my sleep, and it has paid off. I keep the bedroom cool and dark. I removed all electronic equipment from my bedroom. I turn off my cell phone and do not place it near my head. I take time-released melatonin 30 minutes before bed. I do not use electronic devices an hour before bedtime. Once in bed, I use eye shades to shut out any ambient light. I put a sleep app on my phone called Insight Timer. I've taught myself to navigate bathroom trips without turning on the light, sometimes keeping my eyes nearly closed. I made sure there are no obstacles to trip over between my bed and the bathroom. I look forward to going to sleep in the sacred space I created. Changing eating habits was another major challenge. I did not follow a gluten-free low-carb diet when I first went on the protocol. But I gave up sugar and artificial sweeteners. Once I tried the diet and stopped eating gluten, I could not believe how much better I felt. No more bloating and no cravings! My energy returned, but most important, the fog lifted from my brain and I could think again! At the same time, I waged a war against inflammation and exposure to neurotoxins--especially mold in my case. I have detoxed my system and eliminated mold in my home, but I am concerned that mold spores still live in my body because of the violent reaction I have when in proximity to moldy environments. In addition to taking the supplements recommended on the ReCODE Protocol, I shield myself from harmful substances to the extent possible. I drink only filtered water out of glass or stainless steel. I do not use plastic containers or aluminum. I eat whole foods, organic when possible, and do not buy processed foods. I eat gluten-free and lean toward a ketogenic diet with high fats, medium protein, and low carbohydrates. I fast 10 hours or more between dinner and breakfast. I periodically fast 24 hours, consuming only water. I use anti-inflammatory spices like cinnamon (a quarter teaspoon a day), cayenne pepper, black pepper, and turmeric. I maintain good dental hygiene by brushing and flossing often and getting frequent cleanings. I buy safe household products and clean with basic supplies like white vinegar and baking soda. I challenge my brain by taking graduate level courses in difficult subjects like neurology. I constantly research scientific articles on neuroscience and dementia. I teach at a major East Coast university, which keeps me on my toes--I have to read and lecture on all the papers I assign my students. I also teach an early morning yoga class and do a daily home yoga practice. In addition, I do aerobic exercise for 45 minutes a day four to five times a week, either on a treadmill or biking. I meditate 20 minutes twice a day. I keep stress at a minimum. I socialize with friends and family often. And--critically--I maintain a positive attitude. It is important to reiterate that the recovery process is a slow one. My foggy thinking and memory lapses did not disappear quickly. Recovery unfolded gradually. On several occasions, I was taken by surprise by how different I felt--the veil of murkiness was lifting. Thoughts started coming easily and in an orderly fashion. I began to read again and comprehend what I was reading. My brain was so sharp one morning that I ran through the house shouting, "I can think, my brain is back!" The clarity felt so different and unfamiliar. I needed to get back to work. After about ten months into the protocol, I felt ready to accept a short-term consulting assignment. That was scary because it involved overseas travel to a stressful environment, and I knew it would disrupt my routine. It would mean greater challenges finding the right food and avoiding gluten. Minimizing sleep deprivation during and after 14‑to 18‑hour flights was not easy. I planned stopovers to allow an overnight stay to avoid loss of sleep. Sleep masks and earplugs are essential. I found that aerobic exercise upon arrival helps to reset the body clock. Despite good planning, I had a setback. My first assignment was extended beyond the original commitment and I ran out of supplements. Work was stressful due to poor security, and I wasn't sleeping enough. I began to have periods of brain fog. The combination of lack of supplements, inadequate sleep, and stress resulted in a setback in my recovery. That was a major wake‑up call. It clearly illustrated the importance of staying on the program. After I had been home for a couple of weeks, I was able to get back to where I had been before the trip. Even though I began to experience many positive improvements within a few months of going on the protocol, reversing memory loss is an ongoing process. The work never stops. I don't feel like I'm "cured," even though my Alzheimer's disease (AD) symptoms have reversed. I function at least as well as--and in many instances, far better than--I ever have in my life. Keeping on the protocol day in and day out--continuous compliance--has been the hardest thing I have ever done. But I keep doing it because I am afraid not to. I'm afraid the disease will come back, and if it does, I might not be able to beat it back again. Does the protocol work for everyone? Sadly, it doesn't. The reasons may include the degree of cognitive decline when one starts the protocol or other mysteries of the disease yet to be unraveled. Some people, regardless of their fear of Alzheimer's, will not stay on the protocol. But to succeed, you must stick to it. The miracle turnaround that began when I met Dr. Bredesen nine years ago continues on a day‑to‑day basis. A more willing patient would have been hard to find. I was so desperate I would have eaten dirt if I thought doing so would have given me back my brain! As it turned out, I did not have to eat dirt, but I did embark on the most challenging work of my life. Dr. Bredesen developed the road map. I follow it. Excerpted from The First Survivors of Alzheimer's: How Patients Recovered Life and Hope in Their Own Words by Dale Bredesen All rights reserved by the original copyright owners. Excerpts are provided for display purposes only and may not be reproduced, reprinted or distributed without the written permission of the publisher.