out of the brain during sleep.
Perhaps CST can also do this by increasing the flow of CSF in the brain.
Wednesday, June 30, 2021
Sunday, June 27, 2021
Memory is not it's cracked out to be
Memory is not what it's cracked out to be,
if its mostly short term memory.
I show hope for people with Early Alzheimers.
I was able to add 55 capitals of the 55 European nations I memorize a couple of years ago.
Watch Memory palace two link
I use my Memory Palace if I have trouble falling asleep.
Sometimes I fall asleep before I finish the first five smallest European nations. It must be like hypnotic suggestion.
Since I travel so much and meet many fellow travelers on cruises I find it useful to have this information.
What are the choices for someone with Early Alzheimers?
NYT update July 9, 2021 on Aducanumab link
I am eligible for Aduhelm IV infusions.
I know I have a great deal of amyloid in my brain.
I am doing well with Dr Dale Bredesen's Recode protocol which tries to decrease inflammaton that they believe causes the formation of amyloid.
The Recode protocol is expensive but not as bad as the cost of the IV infusion? at this point.
Thus I will wait another 6 months for the post trial results to come in and see how insurance coverage goes.
Dr Daniel Gibbs writes in Tattoo on my Brain;
Thus I may wait too long.
I think the sudden drop in function is usually to vascular reasons.
Since my cholesterol is extremely low and my systolic blood pressure usually under 120, I think my chances of falling off a cliff are low.
It's time for the media to take a close look
at the choices for someone with
Mild Cognitive Impairment
(Early Alzheimers).
1- New approved drug Aducanumab
2- Multi-faceted approach with Dr Dale Bredesen Recode protocol
My early opinion of ReCode link
3- Multi-faceted approach with Dr Richard Isaacson's protocol.
Review of Peter Attia's podcast link
Three points of good news on all these fronts
One Aducanumab
In Dr Gibbs personal experience getting ARIA with the new drug and treating the inflammation with high dose steroids may be
the best new approach
TWO
Dr Bredesen's Recode Protocol
My slow adherence to ReCode link
I was very skeptical of the long list of nostrums for AZ.
However Covid occurred and I had the time and the money to pursue this program.
I was most interested in getting their Cognoscopy lab work. $500.
Cognoscopy report part one link
Cognoscopy report Part Two link
I paid for a years worth of appointments for around $2500. Higher prices in bigger cities.
THREE
Dr Isaacson's Protocol
It has been difficult to find out what is in his Cornell Protocol.
I suspect it is similar to Dr Bredesen's protocol.
No idea what the cost is to go to his clinic in NYC.
I have his and Dr Chris Ocner's book:
The Alzheimer's Prevention and Treatment Diet
Using nutriton to combat the effects of Alzheimer's disease
It is comforting to see two independent Alzheimers experts with good results in their programs.
All these choices are expensive.
They all have a simiar basic approach that can be started immediately without expensive supplements.
1- Exercise
2- Sleep
3- Different healthy diets proposed list of 3 diets
4- Socialization
5- Control blood pressure
6- Lower cholesterol
7- Treat Diabetes
8- Try to maintain a healthy weight
What will motivate you to do that lenghtly list?
Make the diagnosis early!
Go to a neurologist that has an interest in Dementia.
After he does the usually tests and labs to exclude a possible secondary (treatable) cause of dementia ask him/her to refer you to a Cognitive Psychologist that specializes with 3 hour testing.
So far, this is the only way to pick up Alzheimers early.
I was finally diagnosed with a PET AMYLOID Scan in Dec 2017.
I was immediately started on Namzaric.
Saturday, June 26, 2021
Amazon review of Tattoo on my Brain by Dr. Dan Gibbs.
Title: This is the best book I have read on Alzheimers.
First it is written in the first person (with ghost writter)
Second it is very timely. Dr Gibbs was first to have a reaction from Aducanumab that put him in ICU.
He recovered from ARIA with high dose IV steroids. Amazing that he improved his mentation to the point where he thinks he is better than before the Aducanumab.
As a physician I found his expertice as a Neurologist very informative. Others might find it too much in the weeds?
I am only giving him 4.5 stars because he does not discuss keto diet or going on statins to get cholesterol down as low as possible to avoid stroke and heart attack. These are 2 events that can cause an Alzheimers to "fall off a cliff".
The rest of his advice is fairly standard.
But it is his personal writing that gave me so much solace and so much for me to hope for myself as I am in my fourth year of having Alzheimers.
Review of Tattoo on my Brain Part Six
Review of Tattoo on my Brain Part Six
Chapter 16
"It's only scary if you look down"
I came to understand this chapter better after reading it a second time.
Dr. Gibbs speaks about a patient with forgetfulness that he told she may have early Alzheimers but there was no way to know for certain.
A month later he found out she committed suicide.
When I first learned I had Alzheimers confirmed by PET Amyloid scan in Dec. 2017 I was bewildered because I had no idea of my prognosis. The best I could hope for was 2 years of a steady course on Namzaric. I thought about my diagnosis most of the day. This is why I titled my first book:
I Am Waiting for When I forget I have Alzheimers.
Dr Gibbs writes on p 158
"someones fear of the future as they come to terms with the diagnosis can often be debilitating beyond the burden of the physical disease itself."
This is why I write and publish a yearly journal of the course of my Alzheimers. I am seven months into the writing of my Fourth Year since my diagnosis was made. I hope the details of my journey will make it clear to someone that if you make the diagnosis early when you only have Mild Cognitive Impairment, you probably have a good many years ahead of you.
As Dr Gibbs writes on p 168:
"One thing that is striking as you get near the top of Beacon Rock is to look down at the boat dock below. The boats tied to it are so tiny you can barely make them out.
Looking down isn't always scary.
It can also heighten your sense of gain in altitude.
You can feel how far you have come."
After 43 months of living a wonderful life with Alzheimers, I can certainly understand and agree with Dr Gibbs above statement.
Friday, June 25, 2021
Diets for early alzheimers
Various books opinions on diet for Alzheimers.
MIND DIET
1-Tattoo on my Brain by Dr Gibbs
2-Keep sharp. Build a Better Brian at any Age by Dr Gupta
3- Mayo Clinic link
Ketosis dietThe End Of Alzheimers by Dr Dale Bredensen
Ketoflex 12/3
p 179
"You can follow principals as a vegetarian or omnivore and get the same benefits."
"Mild ketosis ... is optimal for cognitive function."
"Combine low carbohydrate diet with 12 hour overnight fast. '
The Alzheimers Antidote by Amy Berger
p 27
The Alzheimers Prevention and Treatment Diet
by Richard Isaacson & Chris Ochner
The APT diet p96
Part Five review of Tattoo on my Brain by Dr Gibbs
Part Five review of Tattoo on my Brain
by Dr Gibbs
p 125
"Most of the conversation about Alzheimer's is about
is about fear and lost and things you can't or eventually won't be to - do, or do anything about.
Helplessness and hopelessness have been the dominant theme of the conversation for more than a century."
p 144
"In short, the science suggests when the sense of smell goes missing, it can disrupt the mechanism for making and retriving memories"
p 147
"multiple types of complex brain processing of sensory information can be inpaired by Alzheimer's, some in the early stages and some later in the disease. A remarkable exception is music. "
Review of Tattoo on my Brain Part Four
Part Four
Review of Tattoo on my Brain by Dr. Dan Gibbs
P 91
" A recent study reported in JAMA Neurology showed that high cognitive reserve, as measured by education and high baseline intelligence, DOES NOT protect from Tau-associated brain atrophy but it DOES lead to a delay in cognitive impairment, postponing the onset of of the symptoms of Alzheimrers disease."
p 96
"There's no way yet to measure cognitive reserve."
p 102
"In March 2016, I (Dr Gibbs) entered a phase 3 clinical trial of the antibody called aducanumab.
Three positive points about this new drug.
"First... was based on a naturally occurring antibody found in the blood of elderly people who did not have any cognitive impairment."
"Second, side effects appeared minimal."
ARIA (amyloid related imaging abnormalities)
"Most of the patients with ARIA had no symptoms at all"
Third, "the results of the earlier phase one trial looked very encouraging
p 109
Chapter 13
The most important and climatic chapter in the book
At the end of Sept. 2017 Dr Gibbs had his first infusion of aducanumab. No side effects.
Next month after the second infusion he experiences
a new phantosmia.
A week after the third infusion, the headaches began.
"On December 13, about six weeks into this treatment period I started having trouble reading simple words."
"About a week later, late one evening, my headache suddenly exploded with excurciating pain."
Admitted to ICU he had an MRI which showed
"many areas of brain swelling and microhemorhages...these were classic imaging findings of ARIA."
"Repeat MRI a month later showed the brain swelling was actually a little worse despite not getting any more infusions of the test drug"
Dr Gibbs was the first trial participate who required treatment for the side effects of aducanumab.
His side effects were considered "unique and concerning".
Dr Gibbs "doctors decided to treat it as they would a serious flare-up of Multiple Sclerosis (MS)."
Treatment was "five daily infusions of very high dose steroids."
"After the third day my headaches went away and I was able to read again."
"By the summer of 2018, I was feeling really good"
Thursday, June 24, 2021
Review of Tatto on my Brain by Dr. Daniel Gibbs Part three
PROLOGUE
page 12
"More than 100 years since Auguste's diagnosis (first patient dx'd w AZ) and death.
And yet the typical time from diagnosis to death for those with Alzheimer's has remained the same,
about EIGHT YEARS.
THE SMELL OF BAKING BREAD
13 years ago; Dr Gibbs first sign of AZ?
page 27
"False odors are called phantosmias."
I was smelling Pot link
Dr Gibbs Internist had him get a MRI which he didn't think he needed.
It turned out the MRI showed a Pineal Gland tumor.
The tumor was large enough to press on his optic nerve but so far did not affect his vision. The benign tumor was removed uneventfully.
A SUBBORN PUZZLE
PAGE 39
THE NEUROSURGEON "had never seen a pituitary tumor..cause loss of smell."
p 61
By the beginning of 2013, "by most standards I was still cognitively normal."
At age 62 he was concerned by nagging with recall
of names and words and he was homozygous for ApoE 4 for AZ.
p 64
About a year after retiring as 1964 began he went to a dementia specialist for formal cognitive assesment.
Results were normal except for delayed verbal recall which gave him the diagnosis of mild cognitive impairment (MCI).
p 75
In 2015 his cognitive test was unchanged except for a high score on depression.
Dr. Gibbs doesn't discuss if he went on antidepressants?
P 83 September 2015
"there they were the unmistable tell-tale signs of
Alzheimers on the Amyloid Pet Scan and the Tau Pet scan.
p 87
Dr Gibbs cognitive scores were better than could be expected based on his scans.
Dr Gibbs "suggested that lifetime habits of study and stretching to learn and other stimulating cognitive activity, contribute to so-called cognitive reserve, a kind of brain bank of neural cells or networks that provided back up, or created resiliance, that might be keeping my cognitive function high despite the presence of brain atrophy and accumulations of plaques and tangles normally seen in mild to moderate Alzheimer's disease.
Favorable WSJ article on new AZ drug
Favorable WSJ article on New AZ drug link
Very optimistic article.
Could it be a pro-business article? Helping Big Pharma?
With my neurologist we decided to hold off on new drug
(since I was heterozygous w Apoe4 gene) for 6 months.
I read TATTOO ON MY BRAIN by a neurologist who was dx w AZ 5 years ago.
He had an ARIA reaction to the drug and ended up in the ICU.
With high dose steroids he recovered.
Ripping off the amyloid in a patient that is homozygous positive ApoE4 caused inflammation and microhemorrhages.
He had a bad decline with his AZ..
However with high dose steroids he recovered and seemed to be better mentally than before.
Perhaps this is a way to approach treating AZ. Get a strong reaction to the drug then decrease inflammation with high dose steroids.
Kudos to Dr Daniel Gibbs for publishing this idea in his book.
Wednesday, June 23, 2021
Review of Tattoo on my Brain Part two
PART TWO review
Today I finished Dr Daniel Gibbs book, Tatoo on my Brain.
It was 229 pages long and I received it on June 8.
The last 3 days I pushed myself to finish it so that I could start reviewing it in detail.
I looked up his address today on internet and sent him a letter. I hope he responds.
INTRODUCTION
"its (AZ) slowly growing presence in my brain"
"in the most universal sense a diagnosis of AZ is clarifying, it presents the uninvited opportunity"
"a definitive dx. of AZ requires evidence of Amyloid plaques"
"when we realized in early 2019 that the conversation about AZ had long been stuck on fast-forward to the late stage"
Review of A Tattoo on my Brain by Dr Daniel Gibbs Part One
I began reading a book by a neurologist with Alzheimers written in the first person (mostly?).
Also written with Teresa H. Barker (ghost writer?).
I am really into this book.
This neurologist was diagnosed two years before I was with Alzhiemers.
On page 72, Dr Gibbs writes about his mental status at age 63?
His cognitive status seems worse than my present mental status at age 69 and 7 months.
Like me, Dr Gibbs believes it is important to be diagnonsed with Alzheimers as early as possible.
When I recieved A Tattoo on my Brain yesterday, I started as I usually do by going to the index at the back.
In the Index I looked for:
1-ketosis
2-statins
3-alcohol (see #5)
4- Cholesterol level and heart attacks
5- Supplements (only one I found was flavonols p 129). He does not seem to advise dark chocolate
but does advise citrus, apples, legumes, berries and RED WINE
6- medicinal herbs was found on p123. Dr Gibbs entered a trail to measure levels of this herb with a wash out period. He never states the name of the herb.
7- Dr Richard Issacson and Dr. Dale Bredensen are not in the index.
8- Lab work results?
9- Death from time of diagnosis p twelve? Eight years with no change since first patient diagnosed.
10- Dreams p 162
What I have learned:
What I really love about this book.
Dr Gibbs writes in the first person about his journey with Alzheimers. Finally I find someone I can compare with my own progress.
There are other others such a Bredesen's Julia and Issacson's Poster child but they have not written a detailed memoir such as Dr Gibbs and myself.
Dr Gibbs is homozygous positive for ApoE4 gene.
I have only one gene for it.
Dr Gibbs never describes himself as having early onset AZ?
One of my neurologists said I had early onset which surprised. Perhaps because we know the disease does have an asymptomatic phase 10-20 years earlier.
Dr Gibbs mental reserve is clearly gigantic compared to mine. He level of education and scientific research over the years is impressive.
I seem to be doing better than he did?
I suggest it is because:
1: I am in ketosis with Atkins diet
2: I keep my systolic blood pressure less than 100 with two drugs ramipril(for DM) and diltiazem (for a fib)
3: I keep my LDLp down to 300 (rock bottom)
4- I keep my non-fasting triglycerides less than 100
5- I still able to write my books yearly which I think keeps me mentally sharp.
Dr. Gibbs five instructions to help early Alzheimers.
Tuesday, June 22, 2021
One of the difficulties of having Alzheimers.
I went on a walk in the woods last week.
We have had alot of rain so I knew ticks might be a problem
Sure enough I found a tick already engorged on my left axilla.
I made a note to myself to have my wife remove it with tweezers.
I forget to ask her till the next day. Alzheimers.
I had her get a firm grip on the Tick and pull slowly.
As best we can tell she did not break the tick apart?
A have a red spot with some swelling that might be an infection.
I wish I had some Tetracyline.
I had had patients with history of multiple tick bites who seem to suffers from lethargy.
I treated him long term with high dose tetracyline.
It seemed to help.
I am an Infectious Disease Specialist with an interest in Tick induced diseases.
For me to have not taken care of the Tick immediately was a real lapse in executive function.
Who are the survivors of Alzheimers?
Who are the surviors of Alzheimers
and why is there not a national data bank on them?
1- Julie Gregory, diagnosed with AZ in 2021 at age 49, homozygous ApoE4 with cognitive problems.
In the End of Alzheimers by Dr Bredensen on page 221 she details the extraordinary ReCode routine she does everyday which she claims helped her reclaim her mental health. She co-wrote part two of the sequel to this book titled The End of AZ The Program.
2- Lauren Miller Rogen
Interviewed with Dr Richard Isaacson on Peter Attia's podcast.#138
Ms Rogen does 21 of the items in the Isaacson protocol.
3- Dr. Daniel Gibbs
Neurologist dx. with AZ by PET Amyloid Scan Sept 2015
He is author of his autobiography with AZ in the book, A Tattoo on my Brain.
At 63 yo he seems to have worse AZ than me at 69 yo? page 72
He had cognitive decline but was not bad enough to get into any trials?
Definitive dx made with AZ by PET Amyloid Scan Sept 2015
Thus he might say he has had Alzheimers for 6 years but suppected he had it a decade earlier with loss of smell.
4- Dr. Brian Edwards (myself)
author of three annual diaries on my AZ experience.
I was diagnosed in Dec 2017 with Pet Amyloid Scan.
Of the four patients listed, I am the only one that immediately started Namzaric?
I am presently in the middle of writing about my fourth yearr
Sunday, June 20, 2021
Highlights of Dr Attia's podcast with Dr. Amanda Smith
ONE
TWO
THREE
FOUR
In Dec 2017 I enrolled in a free Amyloid Pet scan after getting prolonged cognitive testing with a neuropsychologist. It showed I had a great deal of amyloid plaque. I published both these full reports in my first book,
Waiting for When I forget I have Alzheimers.
FIVE
I never had a lumbar puncture even though the trial I entered wanted to do it. I was on a blood thinner, Xarelto.
Saturday, June 19, 2021
Editied version of Dr Peter Attia's letter on new AZ drug
Dr. Attia wrote this letter 6 days ago and it was sent to me as one of his subscribers.
It is one of the best articles I have read on the new drug.
I have pulled out excerpts and edited it to make it easier for Alzheimer's patients like myself to understand.
“The monoclonal antibody treatment aimed to slow the progression of memory and cognitive problems arising early in AD by decreasing amyloid beta in the brain,
a potential disease-modifying treatment is unlike the four approved drugs for AD, which treat symptoms of the disease and not the disease itself.” (such as Namzaric that I have been taking for my Alzheimers for the last 39 months)
‘However, there is certainly controversy and considerable public debate around the drug’s approval; after the FDA approved the treatment, three FDA advisory panel members resigned, which you can read more about here. But controversial or not, the fact of the matter is that the drug is now in the arsenal of drug treatment for AD, and with that, I am interested in what the drug’s approval means for AD clinical care going forward.
As of now, there are as many questions as answers, involving the
1-real-world efficacy,
2-safety, and
3-application of the drug.”
“As part of aducanumab’s accelerated approval, the FDA requires Biogen (the pharmaceutical company that manufactures aducanumab under the brand name Aduhelm) to complete a phase 4 confirmatory trial to verify the drug’s clinical benefit.
Additional information on the drug’s safety and efficacy will also come from its use in clinical practice, which will shape its clinical use applications.
Doctors will see patterns and eventually may be able to stratify the patient population receiving the drug by who best responds, if it is well tolerated, and where side effects lie.
The questions around the safety and efficacy of the drug exacerbate the explicit cost of the drug, both financial and experiential. The drug costs 56,000 dollars a year.
There is also ambiguity around how to use the drug, which may sound like an unexpected unknown for a drug that has just been approved by the FDA.
The clinical trial was very specific about how the drug was used:
to treat patients in the mild cognitive impairment stage of AD who had amyloid beta—” I met this criteria myself and decided not to take it yet with the advice of Dr Russll Swerdlow at KUMC Memory Center.
” The drug was approved based on its ability to reduce amyloid in the brain (which is correlated with improving mild cognitive impairment),
rather than based on a clinical measure such as delaying cognitive decline.
In real-world treatment, however, the standard of care does not often include diagnostic methods to evaluate the presence or absence of amyloid beta in patients with AD; rather, treatment guidance relies more on cognitive and daily functional assessments.
In terms of amyloid beta assessments,
1- positron emission tomography brain scans used to image beta-amyloid are expensive, 2- spinal taps that can test for the marker are invasive, and
3-blood tests are only just emerging and are not (yet) widely used.
There is further uncertainty around prescribing aducanumab because the FDA explicitly left the directions for who should get the drug general: while the clinical trial was very specific about how the drug was used, the drug label does not include any criteria limiting its indication to a subset of patients.
Whether or not you have read the fine print, many of you have likely seen an insert that comes with a prescribed medication. Generally speaking, before a patient starts a drug treatment, every doctor has to read the accompanying package insert.
The insert is like a playbook for giving the drug;
it includes details and directions, such as
1-what the drug is indicated for,
2- possible side effects from taking it,
3- dosage, and
4- how to administer it.
The opening line of the package insert of aducanumab, under the brand name Aduhelm, says that it is indicated for the treatment of Alzheimer’s disease. Full stop.
As AD is a spectrum that ranges from:
1- Stage 1 Preclinical (asymptomatic) disease, to
2-Stage 2 mild cognitive impairment (pre-dementia), to
3- Stage 3 more advanced stages of mild, moderate and severe dementia,
the ambiguous “Alzheimer’s disease” statement may raise some confusion about what specific population of patients the drug is equipped to treat.”
It is interesting that the FDA is leaving such a broad range of drug application decisions in the hands of clinicians. This discretionary responsibility, which demands a case-by-case approach to care, will quickly reveal how the field will need to amend its current diagnostic methods and data collection practices. The evolution in clinical diagnostics, such as blood tests for amyloid and tau, will be used in a few years to risk stratify patients and also guide treatment (much like commonly used cholesterol tests today).
Further, genetic testing may also soon become part of a standard of care, especially considering that patients with two copies of the ApoE4 gene are at higher risk for developing side effects from the treatment, which include brain swelling and bleeding. Those patients may be more optimally managed with a more individualized titration schedule and closer monitoring for adverse events with magnetic resonance imaging scans.”My neurologist last week cautioned me on the drug based on the fact I had one PApoE gene positive.
Thursday, June 17, 2021
Optic nerve in Alzheimer's Disease
I saw my Opthalmologist for my annual diabetic eye exam.
I had a good exam. I asked him my eyes and Alzheimers.
He said they have been interested in finding abnormalities in the retina as a early sign of AZ for the last 10 years.
He taught me the optic nerve is not just a cranial nerve.
CNS = Central nervous system
The CNS consists of the brainand spinal cord. The brain is protected by the skull (the cranial cavity) and the spinal cord travels from the back of the brain, down the center of the spine, stopping in the lumbar region of the lower back.
Eye is window to brain link 2010
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