The Road to Recovery
Recovery -noun
A return to a normal state of health, mind, or strength:
The following paragraph is from chapter 3 of my upcoming book, Running All Over The World, Our Race Against Early Onset Alzheimer’s. Due out June 15, 2021.
Our favorite commercial is a straightforward ad for ALZ.org. They talk about their belief that the first person who will be cured of this dreaded disease is alive today. We both feel Catherine is that person. For that to be the case, though, we have to preserve what she can do as long as possible. I’m pretty sure that the initial cure will be for a specific subset of sufferers. We want to make sure she is part of that subset.
Finding a Cure
Finding a cure has been my relentless quest over the last seven years. My personality type prevents me from giving up. It might have to do with my own struggles in life. I have never been tested but have all the markers for someone with dyslexia or similar learning disability. I had tutors as a child in school and was asked to leave University of Pennsylvania because of poor grades. That is a nice way to say I flunked out.
I found my passion in aviation and excelled in that field because it was the right fit for my brain. You go to class in the morning and then got in a plane in the afternoon and applied what you previously learned the morning prior. I taped my classes and would listen to them over and over again while I worked the night shift cleaning parking lots all around Tulsa Oklahoma.
Dyslexia
I found because of my learning disability I had to hear and apply the knowledge for it to remain in my brain. Little known fact pilots are well suited for those that have dyslexia. I must admit reading back complex instructions from air traffic control was not easy. For example, UPS 1273 turn left to heading 360 climb and maintain flight Level 230 and contact New York center on 123.45, good day.
The pilot not flying would have to repeat word and number for word and number. When it got real busy at some high density airports and instructions are coming in rapid fire, as the captain, I learned it was best for me to say to my first officer I got the airplane you get the radios. I found it was easier for me, to do, rather than read back the instructions. That was my work around.
My point here is three fold. I never gave up, I always figured out a solution to a problem and I probably understand brain problems better than most. Over time I have devised many a work around for Catherine. As time went on during her decline I would always modify what would work best for her.
Nomads
Our nomadic lifestyle is an example. Instead of living a routine lifestyle we instead exercise her brain in various ways daily. As she puts it. “I keep moving her cheese.” She also gets intensive exercise which exercises her brain. We see something new and exciting as often as possible. I also make sure she gets plenty of sleep which removes the deposits of beta-amyloid protein fragments (plaques) and tau protein strands (tangles) which form in her brain causing nerve cell damage.
I have often said to others that her decline is not a straight line but more of a sine wave in decline. Some days or weeks are either better or worst than previous days or weeks. Another way to look at it is like a dimmer switch being turned to the left slowly as the lights in her brain dims. Back to the sine wave example there would be periods that it would brighten for a short period of time.
Unfortunately last March, while in St. Kitts, some of the very negative aspects of Alzheimer’s started to take hold. The ones I will reference here are delusions, sundowning, uncooperative and aggressive behaviors. Repetitive tasks was also a very real problem Lastly she was not real sure who I was and how I fit into her life.
Covid
Covid was in full swing so the isolation was also a factor into her accelerated decline. At this point I was considering getting a place to live and close down our running all over the world attributes of our lifestyle and thus giving up on her getting her final marathon for all 50 states.
As time went on it was getting worst and the decline was accelerating. Over the years I have tried many different supplements and was now contemplating giving her a prescribed psychotic medication to possibly help her. I had promised her that I would not do something like that but my options were becoming limited.
I had scheduled a trip to the west coast in June so now I was thinking maybe I should just cancel that trip and just stay put. With Covid, cancellation fees were all being waived so I was back to thinking we should just settle down.
I had researched everything I could get my hands on. Years earlier I even watched a 7 day, 2 hour a day presentation that actually talked about curing those with Alzheimer’s. It is a recode protocol developed by Dale E. Bredesen, MD, in his book The End of Alzheimer’s. The premise is that the amyloid beta plaques and tau tangles that develop in the brains of Alzheimer’s patients are a perfectly normal response to an attack on the brain, so his protocol involves finding the underlying cause of those attacks.
Once the harmful identities are determined, a doctor develops a diet and prescribes appropriate vitamins and minerals. covered. Bredesen’s book had gotten mixed reviews. I was rapidly coming to the conclusion that this disease would not be defeated with a single pill.
Should we settle down?
Sometime in May I ran across another 1 hour presentation from Doctor Julia Lundstrom with Simple Smart Science . She talked in great detail about inflammation of the brain and that was something I had heard about previously so I was now very curious what she thought would help. She did have a few supplements that her company was selling but near the end she mentioned something called Mind Restore by Awakened Alchemy.
The name itself got me very interested and after looking into what they wrote about its benefits I figured what did I have to lose.
Mind Restore
MIND RESTORE is a nighttime nootropic that nourishes your brain while you sleep, so you wake up better rested and with a stronger and healthier brain.
MIND RESTORE blends 9 clinically-studied all natural premium nootropic compounds, amino acids, neuro-vitamins and adaptogenic herbs to promote restorative sleep, improve memory, improve mood, boost neuroplasticity and support brain and nerve health.
It has a combination of supplements that I have tried in the past but not in combination. You take it at night and it aids sleep, which I have talked about previously and nourishes the brain while you sleep. With any new drug or supplement I phased it into her routine with me also taking it for any side effects. 3 times a week half the dosage for the first week. 4 days a week the second week then 7 days a week still at half the dosage then back to three days at the recommended dosage and so on.
Catherine has a brother, Larry, who was on temporary assignment in San Fransisco so maybe seeing him and his family would help. So off we went to the west coast and the road to recovery, in my mind began. It was just like flipping a switch after a month her delusions were gone. She stopped doing repetitive actions, no sundowning and started to tell me she loved me on a regular basis.
Right after that we had a Mind Center appointment and I told them about her improvement and showed them what was in the supplement. Our nurse practitioner recognized the components but like me had not heard of a supplement with all the components in one pill.
They also have a supplement called Awaken Gold which started giving her this past January, with the same administration protocol. I have seen some improvements and hope over time I will see continual improvements.
Awaken Gold
AWAKEN GOLD is a daytime nootropic that nourishes your brain to fuel your ingenuity, unleash your creativity, and support the development of the amazing possibilities of your mind.
AWAKEN GOLD adds N-Phenylacetyl-L-Prolylglycine Ethyl Ester, a peptide ester and one of the most effective nootropics available, to the 10 clinically-studied premium nootropic compounds, amino acids, neuro-vitamins and adaptogenic herbs that comprise AWAKEN. This addition adds a powerful boost to cognitive performance and neuroplasticity.
AWAKEN GOLD increases neuroplasticity (accelerating learning), improves memory, improves focus & clarity, promotes positive thinking, increases motivation & drive, and supports overall long-term brain health.
Both products talk about Nootropics and there is much to be said about those drugs and supplements listed as such.
Nootropics
Nootropics: smart drugs and cognitive enhancers are drugs, supplements, and other substances that are claimed to improve cognitive function, particularly executive functions, memory, creativity, or motivation, in healthy individuals. While many substances are purported to improve cognition, research is at a preliminary stage as of 2021, and the effects of the majority of these agents are not fully determined.
They also have a downloadable PDF which goes into detail about the science for the various components in these two products. The one that really caught my eye was what they had to say about Acetylcholine. That takes me back to our Mind Set clinical trial days in 2015. The thought there was to find a way to increase Acetylcholine. Acetylcholine is a vital chemical in the brain that helps with cognition and performing daily tasks.
These products have supplements that naturally increase levels of Acetylcholine when taken in combination. We had much success with the clinical trial but that drug RVT 101, Intepirdine, did not go to market because it did not get the levels of improvement it had hoped.
I have been in discussions with a representative of Awakened Alchemy and he stated that they can not make any claims about their products and improvements for those with Alzheimer’s because they decided not to spend the millions necessary to satisfy FDA requirements. 42% of their products are sold to those 65 plus which is understandable since most diagnosed with Alzheimer’s are in that age group. However for you younger folks which are in the majority group it is never to early to get the edge you might need to hold off those senior moments.
If anyone is interested in trying any of their products, here is their website, https://awakened-alchemy.com. Also if you use the coupon code RESTORE you get 15% off your first bottle. They offer a 100% Satisfaction Money Back Guarantee, applicable up to 60 days following your purchase. I am part of their affiliate program.
I figure it took many years for her decline. She was diagnosed 7 years ago this April however I noticed something was wrong at least one year prior. Some studies suggest that it could be 10 years or more that a person could first be effected but can compensate so that no one knows about their ailment. So going back to my dimmer switch analogy it might take just that long for the brightness in her brain to be turned all the way up to full bright.
Only time will tell but that is okay with us. Yes, I do have to help her with everyday tasks but as long as she appreciates all that I do for her, cooperates when I try to help and tell me that she loves me on a regular basis I can live like this for the rest of our lives. It reminds me of something the doctor that developed both RVT 101 and Donepezil, which she has been taking for 7 years, once said. I paraphrase, In about 5 years we will find a drug that will eliminate Alzheimer’s and people will simply die from something else.
100 days to a younger brain
In the mean time Catherine and I are listening to an audible book called, 100 Days to a Younger Brain, Maximize Your Memory, Boost Your Brain Health, and Defy Dementia, by Sabina Brennan, PhD. Catherine actually found this book in paperback while we were in a book store in Bloomington. This was the first time in several years she has asked to read a book. Unfortunately she is still unable to read it herself so that is why I got the audible version. It does talk about dementia related diseases and how to keep it at bay. It also gives some helpful advise that can be used by anyone.
For me it confirmed that our lifestyle has given Catherine many years of quality life. It hit all the points concerning sleep, exercise, diet, and seeing and doing new and exciting activities. She talks about the importance of journaling your day and has exercises to do on a daily basis. Catherine is unable to do so by herself but our work around is for her to tell me how she feels each day and I put that word for word in the memo section of her phone.
I also found a phase 2 Clinical Trial in Atlanta called ACT-AD. This trial is evaluating if a new investigational drug (ATH-1017) is safe and effective in improving symptoms of mild to moderate Alzheimer’s disease. ATH-1017 is designed to boost a repair and regenerative pathway for brain cells, promoting brain health and function. ATH-1017 represents a new approach to treat Alzheimer’s disease, potential targeting the root cause of memory decline by repairing brain cells and rebuilding brain networks.
We had our 4 month follow up exam at the Atlanta Mind Center and our nurse practitioner, which Catherine loves, suggested that we try a speech therapist to build on increase abilities. Also she gave us the name of several Adult Day Programs. We did find an organization called Fox Rehabilitation that does in home or hotel services in the area of memory, cognition and speech therapy. They have offices both in Atlanta and parts of Indiana.
Going back to my opening paragraph my goal is to have Catherine be one of those folks. As of yet I can not declare I have found a cure but at least the road to recovery seems much brighter than it was 8 months ago and for us that is okay.