Tuesday, June 22, 2021

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








Sunday, June 13, 2021

Supplements as discussed in Isaacson and Ochner book

 The Alzheimers Prevention and Treatment Diet 

by Richard S. Isaacson and Christopher N. Ochner

This book was published in 2016. 

Thus their information needs to be updated which I am finding difficult to discover. 

Page 177: Additional supplements being researched.

1- Alpha Lipoic Acid

2- Ashwaganda

3- Coconut oil 

4- Fullerene c 60

5- Carnitine 

6- Fisetin

7- Lithium 

8- Magnesium 

9- Melatonin

10- Vitamin C

11- Vitamin E

Found to be generally ineffective:

1- Gingo Bilboa

2- Coenzyme Q 10


List of ReCode medications I have started since last October 2020 for Alzheimers.

 


1- Flavinoids link


2- Pregnenolone link



3- DHEA link 


4- Ashwaghanda link


5- Alpha Lipoic Acid link (ALA)

I had no idea what this was. This last summer I asked my Florida Neurologist, Dr Elliott about it. 

He said he knew about it from local podiatrist who prescribe it for pedal neuropathy in diabetics with some success. 


6- Krill Fish Oil to get DHA into brain link


7- Zinc link


8- Magnesium Threonate link


9- Increased my Vitamin D dosage link


10- Increased my Testosterone dosage link


11-  Switched from Drug store Vitamins link


12- Other ReCode drugs I have not taken link

On page 234 there three other drugs I was never taught about in medical school.


1- Curcumin 1 gram twice a day (or Tumeric) On empty stomach or with good fats.
2- Bacopa Monnieri 250 to 500 mg twice per day
3- Gotu kola 500 mg once or twice a day. For alertnest and focus.



Saturday, June 12, 2021

 "I'm losing control now". 

 Stanley Lucci in Supernova. 

This movie has great acting but is sad.  

It had a very personal moment for me when the healthy partner (played by Colin Firth) finds out that the AZ patient, (played by Stanley) has been lying about writing a new book. 

I have written six books and my last three books were yearly journals about the experience of having AZ.  

The movie showed me how a patient can 

"fall off the cliff" without anyone realizing it. 

Also it may be my failure to be able to write anymore that is the sign that I am falling off the cliff.


Wednesday, June 2, 2021

I have a perfect Lipid profile!

 


May 21, 2021 Fasting  above

On Lipitor 10 mg, Enduracin 1,000 mg, 4,000 mg Omega 3 triple strenght, Krill fish oil 2 tabs. 



January 25, 2021 non-fasting above

My fasting triglycerides was 51

My non-fasting triglycerides was 69



Lab 12-21-2019 non-fasting above

For Atrial Fibrillation

I take Diltiazem 360 mg extended release qd

I also take Ramapril 20 mg a day

The fortunate secondary benefit is that the systolic blood pressure is almost always less than 120.

I am hoping that my very low cholesterol and BP numbers are the reason I can hope for a few more  good years despite having Alzheimers. 




Follow up visit in my fourth year with AZ with Alzheimers specialist

 I had a follow up yearly ZOOM visit with Dr Russel Swerdlow.

My last evaluation with him was last July.

His repeat cognitive evaluation suggested I did a little better than last year. 

I joked that it must be the four supplements I started on the ReCode Protocol from Dr. Dale Bredesen.  

I started: 

1-Ashwagandha 

2-Alpha Lipoic Acid

3-Pregnenolone

4-Krill fish oil

It took a little courage for me to jump into those drugs but I had the guidance of the Atma Holistic Clinic Doctor H.

As he said last year, Dr. Swerdlow said at the end of this examinaton to "keep doing what I have been doing".  

My visit 4 months ago with my Florida Neurologist link

First visit with Dr Swerlow (KUMCR) link









Tuesday, June 1, 2021

I was having a great day until...

 Finally, after two week of clouds, cold temps in 50's and rain we had a sunny day in Topeka. 

I headed out for my 3 month haircut.  

I drove myself and got there 30 minutes early.  Barber said no problem, lets go.  We had a good conversation and she gave me a good haircut. 


My next task took me to the grocery store across the street. 

I love shopping for groceries.  My wife gave me a list and I had a good time going up and down the aisles getting my steps for the day in. 

With no stress or sweat, mission accomplished. 

Feeling so good I decided to get my car washed.  Lucky me, Tuesday is free MVP wash at lower price.  

Going full power, I stopped at the pharmacy to get two of my presecriptions. 

All was well. 

I walk into the house and put the bag of groceries on the counter and recount my great expedition to my wife.  

She then points out to me while looking at the receipt that I am missing about two bags of groceries. 

No break down, I lept into action and drove back to the grocery store. 

I held myself together in the hope the bags were waiting for me at the store.  

Sure enough my confidence was well founded. 

I had a pleading look in my eyes as I found my cashier.  

She had saved my two bags as well as my ass. 

The big point is I did not suffer stress and distress from this event.

Important for me to remember in the difficult days ahead. 






Lets try to understand each other on Covid vaccine issue

 

Christopher Bentsen

11:31 AM (15 minutes ago)
to me
The sister needs to visit an hospital ICU in Cleveland and speak with the medical staff and look at the faces of patients with Covid infections. Or better, go to the morgue and see an autopsy where their infected lungs are removed. Vaccination hesitancy will disappear. 
FDA has a 6 month waiting period prior to licensure of any vaccine. That is up now, so they will be approved licensed from at least two if not three manufacturers. 
I am against those safety holds during a pandemic where extremely rare events are reported like 1 in one of five million doses. It does nothing but scare people who are not able to understand risk/benefit analyses. 

On Tue, Jun 1, 2021 at 8:31 AM Brian Edwards <brianedwardsmd@gmail.com> wrote:

COLUMN ONE

A prickly topic, but no jabs or needling

She’s a supporter of COVID vaccines, her sister a skeptic. They kept it civil in their back-and-forth debate.

SANDY BANKS

My younger sister and I have a lot in common.

We are both long-winded and gesture dramatically when we speak. We’re patient listeners and inveterate advice-givers. We tilt toward skepticism, and cling stubbornly to our beliefs.

And that has brought us to a rare impasse, on the issue of COVID-19 vaccines.

I have been celebrating since February, when I got my first shot of the Moderna vaccine at a San Fernando Valley park. My sister Anita in Cleveland has spent the months since then worrying about me.

Ever since COVID-19 vaccines became a reality, she’s been poring over articles and social media posts about hypothetical harms that most scientists debunk. That left her determined to shun the vaccine — and afraid for me to get my next shot.

I love my sister the way she is,” she emailed me three months ago. “And I shudder to think of you having some long-term reaction to this vaccine that could have been avoided. While you are well, I say stay well!”

She followed up with research on natural immune boosters, such as vitamin D. I added that to my health regimen, but refused to even consider skipping my final dose of the vaccine.

“I appreciate the sentiment and respect your skepticism,” I wrote back. “But living here in Los Angeles, I’m more likely to die of COVID than to wind up with some weird vaccine reaction.”

At that point, I hadn’t done the math to know if that was actually true. But my fear of needing a ventilator to breathe was stronger than whatever apprehension I felt about the vaccines.

For my sister, that ratio was reversed. She worried that the new COVID-19 vaccines might turn out, in the long run, to be as dangerous as the disease.

Our email exchange launched a back-and-forth that lasted for months. It was fractious and frustrating at times, because we are tethered to separate echo chambers that amplify our individual views.

But our dialogue also led to heartfelt discussions that have confirmed our sisterly bond — and educated me about the battle that health experts face as they try to crack the code that will get shots into the arms of vaccine-hesitant folks.

I’ve tried, and failed, to convince my sister with stories of lives lost to COVID-19 and the debilitating symptoms that persist for many who’ve weathered the disease.

She responded with examples that influence her thinking, including a post featuring a young Black doctor who says that people of African descent naturally have stronger immune systems, and suggests the novel vaccines might disrupt that.

It didn’t help my pro-vaccination campaign when the Johnson & Johnson vaccine was temporarily pulled from the market in April after rare and dangerous blood clots were documented in a handful of people among the millions who’d received the vaccines.

My sister and I drew different conclusions from the same set of facts.

To me, the government reaction was a reassuring example of transparency in action: Use of the vaccine was quickly suspended and the problem publicly dissected by medical experts, who deemed it statistically insignificant and allowed vaccinations to resume while studies continue.

But my sister saw the episode as a warning sign, a reflection of potential hazards yet to be detected because of the rush to bring the vaccines to market.

“There are still so many unknown factors,” she told me. And I could not argue with that.

It turns out that after a year of living with COVID-19 fears, my sister and I are both looking for the kind of certainty — a promise of good health — that neither science nor statistics can provide.


More than 60% of Los Angeles County residents 16 and older have received at least one shot of a COVID-19 vaccine. And now that 12- to 15-year-olds are able to get theirs, we are inching toward the 80% threshold that county Public Health Director Barbara Ferrer considers a measure of the “herd immunity” needed to stanch the spread of COVID-19.

In fact, Ferrer predicts that such immunity in Los Angeles could be only two months away — if, that is, we can persuade another few million locals to get inoculated.

But the number of vaccines administered each day in Los Angeles has dropped by almost 50% from its high in April.

That requires us to address the resistance of multitudes of vaccine-hesitant people. And we can’t do that unless we’re willing to listen and stop reflexively demonizing them.

We’ve tended to lump the so-called anti-vaxxers into a few rigid categories: 

1-They are science-denying willful idiots, or 

2-addled conspiracy theorists, or 

3-selfish right-wingers protecting their freedom to spread disease.

But the truth is more complicated. Wading through the weeds with my sister has forced me to accept that — and to recognize how hard it is to change minds when you’re moving through uncharted territory.

Ferrer wasn’t surprised when I told her about my standoff with my sister. In fact, she understands the reluctance of people to commit to vaccines that were introduced less than six months ago.

“This is a new disease and these are new vaccines, with emergency use authorizations,” she said. “We have a lot of information on how safe and effective it is. But what hasn’t been studied is what it can do five or 10 years from now.

“So it’s totally reasonable for some people to say, ‘This is brand new and it’s hard for me to really feel comfortable with it.’ ”

Her department closely monitors reported side effects, with daily reports from across the country and around the world. “We have vast networks studying that,” she said. “They check every day for red flags, and we haven’t really found anything that might be cause for alarm.”

They also spend lots of time trying to understand people like my sister — not so that they can talk them into anything, but to share information in a way that might increase their confidence in the vaccines.

“You can’t start by saying, ‘We’re right, and you’re wrong; you have no legitimate reasons,’ ” she said. “We start with, ‘Tell me what you’re scared of, what your worries are.’ And we try to give them opportunities to learn more.”

But Ferrer has also had to accept the prospect that a significant percentage of residents may not agree to be vaccinated — particularly if the number of coronavirus infections continues to shrink.

“It’s harder now because we have way fewer cases, and [unvaccinated] people don’t feel so afraid. They think they can wait, and not get it right now,” she said.

My sister and I were on the same page, 2,300 miles apart, when COVID-19 first struck more than a year ago. Ohio and California shut down within a few days of each other in March 2020.

We both dutifully masked whenever we left home, suffered through the anxiety of crowded store aisles and panicked if anyone breached six feet. What she missed most was visiting the library; what I missed was drinking with friends.

But she became less worried as Cleveland’s restrictions eased and no one she knew had contracted COVID-19 — while I continued collecting virus horror stories and watching the death toll in Los Angeles climb.

Still, I’ve come to understand the mash-up of forces driving my sister’s choice: her affinity for natural remedies, her experience in Cleveland, her distrust of government and the medical establishment and, perhaps most important, the support and influence of her cadre of like-minded friends.

In my world, everyone I know was excited by the prospect of a COVID-19 vaccine long before one existed. We considered it the ticket out of isolation and back to normal life.

I remember the flurry of messages that filled my inbox when vaccine sign-ups began, with tips from colleagues and friends on how to navigate the clumsy appointment system and which vaccination venues had the least odious wait times.

On my NextDoor feed, the usual litany of neighborhood complaints suddenly gave way to smiley-face emojis and “VACCINATED!!!” posts. And my friends proudly sported “I’m Vaccinated” stickers, making it feel as much like a civic duty as voting.

But my sister’s experience has been markedly different. Her social media feeds are crowded with conspiracy theories, reminders of the mercenary leanings of Big Pharma, and testimonials from people who say they were harmed by the vaccine.

And then there are the warning videos sent from friends, which flash “no longer available” when she tries to click on them. She can’t help but wonder whether those missing links are “the rantings of charlatans — or the cry of sincere whistleblowers hoping to spare the public from extreme harm.”

Last month my sister’s social network landed her in unfamiliar territory: a crowded gymnasium in a rural Ohio town, filled with maskless white people cheering a Trump acolyte who railed against masks, abortions and open borders.

My sister and the friend who invited her were virtually the only Black people there. It felt “very odd being the only people in the room wearing masks,” she told me. After listening to a speaker disparaging their use, she took her mask off briefly before thinking better of it and putting it back on.

She’d come to hear the keynote speaker, a physician her friend had long admired for her stance on the value of natural healthcare and threats posed by medical interventions. That doctor has been traveling the country, urging people to avoid the COVID-19 vaccines.

My sister felt comfortable when a Black doctor led a prayer to open the event. But he was followed by white right-wing politicians, who called themselves patriots.

“I started looking around for the exits then,” she said, chuckling at the memory. “I was like, ‘Which way do I go to get out of here!’ ”

But once the program began, “we felt welcome,” she said. The doctor’s message aligned with my sister’s mind-set, “and the people were very nice.”


I imagine some version of our philosophical disconnect is going on in families and communities across the country, especially as the pool of people eligible for vaccines expands.

Our experience illustrates how deep, untidy and idiosyncratic vaccine resistance may be.

And that’s created a conundrum for government and health officials, who are trying to keep COVID-19 in check by vaccinating as many people as possible as soon as possible — in an era when “Just trust science!” isn’t good enough.

In Long Beach, they’re trying to counter amorphous resistance by giving newly vaccinated people free tickets to the Aquarium of the Pacific and a chance to win a Nintendo Switch gaming console — a ploy intended to persuade unvaccinated young men to roll up their sleeves. In Los Angeles, those getting vaccinated have a chance to win Lakers season tickets.

In Cleveland, dropping your resistance to the vaccine can make you a millionaire. The state of Ohio is using federal coronavirus relief funds to pay for five weekly lotteries that will each net one newly vaccinated winner a million-dollar prize.

And California announced on Thursday a grab bag of incentives, including grocery gift cards to those who complete their inoculations, and the chance for 10 vaccinated residents to win $1.5 million apiece.

Ferrer thinks the offerings might attract some people who have been procrastinating, “but it’s not going to move the needle with those who are really resistant.”

My sister is one of those who won’t be incentivized. “I could not trade my convictions on how to stay healthy for a million dollars,” she insists.

It’s not that she’s a hard-core anti-vaxxer. “I know I probably had [vaccines] as a child that allowed me to grow to where I am today and to be healthy,” she acknowledges. She is the only one of my three siblings who has not been vaccinated against COVID-19.

But to her, these vaccines feel rushed into being. And she won’t be pressured into taking the needle before she’s completed her research — even though many of us might consider her sources questionable.

She’s tuned to a steady stream of “videos of doctors and nurses of every race” who believe the vaccines have not been tested enough.

“They talk about alarming potential long-term effects,” she said, “and it sounds like there may be some plausibility.”

In that, I see her process as being not so different from mine: We’re both gravitating toward analyses that confirm our existing beliefs. Psychologists call that “confirmation bias”; it’s a coping mechanism by anxious brains, desperate to turn ambiguity into truth.

I’ve come to realize that an atmosphere this intense can magnify the influence of what you read, hear or see. I had to acknowledge that when, a few weeks ago, I suddenly began to imagine that every new ache or pain I felt might be a side effect from the shot I got months ago.

If I could be primed so easily by our conversations to blame my maladies on a vaccine I trust, imagine how strong my sister’s mind-set must be, after months of wading through all manner of warnings about COVID-19 vaccines.

So we’ve finally reached a truce: She won’t send me scary videos demonizing the vaccines, and I won’t try to debunk what I consider crazy stuff.

I understand that her choice is not something for Big Sister to “fix.” And I’m heartened that despite how pushy I’ve been, she is still willing to listen to me.

“I do not want to send any info you do not want to receive, but please send me any you think may be of interest,” she wrote.

“Good to know you have researched this subject; I hope your conclusions are more right than mine! — because many are receiving the vaccine, including others I care deeply about.”

update trials of Alzheimers

 The best part of the day is when I have a bowel movement.   Recently started Miralax. I found MOM too harsh. Pacing helps but I get exhaust...