Third review of On Pluto

 I have read page 341.

Last pg is 364. 

Time to write the Third review of 

On Pluto by Greg O'Brien.

This is a good book. 

I was a little critical at first because of his use of stories from other sources to be funny or illustrate his points.  Most of which I have heard before.

Probably I am jealous of all his contacts.  

He even name drops people from his childhood in Rye, NY. 

This book is long because it is an autobiography. 

Again his life is much more interesting than mine. 

I don't have one tenth of his friends. 

I know he is making a context which is fine. 

The chapter that won me over was the one written by his wife, Mary Catherine McGeorge O'Brien. 

Chapter 24 page 329 to 341.

This chapter is amazing and I hope my wife will read it. 

"Ironically, Alzheimers now is starting to heal our marriage."

Hopeful words for my wife and I.

                          

In chapter 23,  Greg O'brien puts his investigative reporting skills in action describing how 12 different Alzheimer patients he knows dealt with their Alzheimers.  Very well written and the title, "which one of you nuts has any guts".   A quote taken from One Flew over the Cuckoo's nest" but very apt. 

I love his historical references because some of them I was not well acquainted with.

Sports references are likewise fun for me and because I heard them for the first.

Popular TV and Movie culture not so much as they were very familiar to me as well as his jokes that I have heard before. 

I quess I am being a tough critic.  Again probably jealousy as he has gotten so much attention. 

When I finish the book soon I will write a book review for Amazon.

I will say this book as done a great service for me. 

It is the only book written in the first person that informs me what to expect as I advance from Early Alzheimers to Moderate Alzheimers. 

The hopeful news is similar to him I will be able to write and talk.  

One thing I will do different I will take stronger drugs for depression if needed. I am doing well with Citalopam 40 mg.  He only takes 20 mg.

If I had his level of rage I would definitely take stronger drugs.  I know I would not want to put my wife through that and she would not tolerate it.  I would be in a nursing home. 

I have more rage than ever but I have never acted out as he has.  

I also listen to the people around me telling me what to do.  

As his wife says, he is an asshole. No humor or jealousy involved.

I gave up my lisence to practice medicine and decreased my driving. 

He continued working and puts himself in impossible situtations which cause him great stress. 

I try to avoid stress.  

Stress is not good for Alzheimers. 

Distress causes decreased judgement, anxiety and depression. 

I will have a cocktail after an argument with my wife to relieve the stress. 

Ashwagandha has helped me as well. 

He says he is taking supplements but he doesn't say which ones other than what Dr Rudolph Tanzi advises.  

Review of The First Survivors of Alzheimers by Dr Dale Bredensen.

 I preordered this new Bredesen book. 

It finally arrived yesterday.

This is the first book to answer the question I asked in a blog in June 2021:

 who are the AZ survivors? link

I started the ReCode protocol after reading about Julie G. 

First visit to Atma clinic Oct 6, 2020 link

With the six survivors discussed in this book and the new AZ drug that seems to be questionable at this point I feel validated in my decision to start the program at Atma Holistic Clinic in Lawrence, KS.  

Also after 10 months on the program I am tolerating all the supplements and cost link. 

I also feel better.  I did well, I think on my extensive three hour yearly cognitive this week for the non-treatement trial I am in.  My fourth MRI result link

Back to the review of;

 The First Survivors of Alzheimer's

How patients recovered Life and Hope in their Own Words

I loved Daniel Gibbs book Tatoo on my Brain and Greg O'Brien's book on their personal experience with Alzheimers. 

Now Dr Bredensen's book discusses 6 of his patients. 

His introduction is excellent.  

The meat of the book:

p19 Kristen (first patient on Recode for nine years)

p45 Deborah (memory improved considerably)

p55 Edward  (positive PET scan)

p67  Marcy (chelations)

p87 Sally (IV anti-amyloid medicine made her worse)

p96 Frank (nine years maintains improvement)

p128 Julie (coauthor of second book: The End of AZ The Program)

Supplements advised by Isaacson and Ochner

 

Best chaper I have read on supplments for AZ

The Alzheimer's Prevention and Treatment Diet 

of Alzheimers Disease by Richard Isaacson  and Christopher Ochner

The following supplements are advised:

B vitamins

Vitamin D3

Omega 3 fatty acids

Cocoa powder

Curcumin

Resveratrol

They may need an update as in the End of AZ by Dr Dale Bredesen they leave out many other options and don't mentione. 

The ReCode protocol by Bredesen does include all the above but Ochner does not advise Gingo Balboa or Co-enzyme Q. 

Maybe we need an update?

Cognitive Reserve with Alzheimers

 I was diagnosed with Alzheimers in Dec. 2017.

This month I was re-evaluated by KUMC on my yearly check in for my non-treatment research trial number four. 

 I believe I did well.  They don't tell me the result of my 3 hour cognitive exam

MRI report link

Follow up with my private neurologist link

Am I doing well because I am on

The ReCode protocol link

Or is it simply that I have a good Cognitive reserve

Second review of On Pluto

Second review of on On Pluto by Greg O'Brien.  

Prior Harsh review link

This time I will post what I think Greg O'Brien got right. 

1- Exercise. 

Author says it recharges his brain.

He does a great deal of running. 

I suspect it's one of the main reasons he is hanging on with Moderate severe Alzheimers. 

He does seem to pay a price with subsequent body pain.  Pain causes distress and this is not a friend to the AZ brain. 

2- Medications p23

This is the only AZ book that at the beginning of the book discusses the usual medications for AZ.

Aricept

Namenda

Trazadone to help him sleep

Celexa (citalopram) 20 mg:

 An antidepressant for his rage, which considering how bad his rage I can't believe he is not on 40 mg which I take. 

3- Socialization

Mr. O'brien has a lot of friends that he stays in touch with and gets good support.

4- Hard drive 'memory palace' on office wall p14

"They paint word pictures. Everywhere there are historical, FRAMED front page stories and magazine covers. 

My memory palace to remember my family link

Memory is not what it is cracked out to  link

5- Supplements p193

I have only read to page 217 so far.

I don't know which specific supplements he takes. 

The list below is what his Alzheimers Doctor advises:

Tru-Niagen

Percepta

Vegan Omega 3

Quercetin

Fiscetin

TUDCA

Ashwaghada

Vitamin D3

Methyl B12 plus

Coenzyme Q (especially if on a statin)

Selenium 

Nordic Natural Probiotic plus prebiotic

7-Religion/Faith

This is a good strategy when faced with death.

Raised as a Roman Catholic the author draws strenght, solace and some tranquility from his faith

8/ Sleep 7-8 hours a night

9/ Great discipline with memory helpers on his phone and gmail. 

10/ Author writes 2 hours every night. 

I also try to write in my blog and twitter everyday. 

I feel great gratification when I can write a good thread on twitter or a good blog.  I encorporate my blogs into my last 3 books on my AZ which I document in diary form. I am now working on my Year 4 book.  

The author and the author of Tattoo on my Brian both taught me about cognitive reserve which will hopefully allow me to continue my writing even as I enter moderate alzheimers. 

           

My first review of On Pluto by Greg O'Brien

I finished reading up to page 163 of On Pluto by Greg O'Brien that I had to stop and start a review.

Part one of review. 

At this point I have to be harsh in my review. 

No question he is a much better writter than me. 

I hesitated to buy his book as I thought it might be too dark after I read

a dark quote Mr O'Brien wrote about his present condition. 

In 2018 when he revised his book, On Pluto, his Alzheimers was much more advanced than mine is now.  

I wanted to see what to expect for myself for the future. 

One good point he confirms from Gibbs book Tattoo on my Brian is that I can still do intellectual activities if I have a good Cognitive reserve. 

He says it takes him 40 minutes to write what did take him 5 minutes. 

I suspect his is still trying to maintain high or perfect standards in his writing.  

That's his first mistake. 

I feel I can be judgemental as I am in Year Four of my Alzheimers. 

Don't sacrifice the good for the perfect. 

No one expects perfect in Alzheimers. 

The second mistake was to not curb his activites earlier in recognition of his Alzheimers. 

He writes about many bad outcomes trying to convince himself that he can continue as normal without consequences. 

Once I had my diagnosis I let my medical licensce lapse. 

I purchased a much safer Subaru Outback car and  my wife started driving most of the time. 

The third mistake was he continued his job.

Living a lie is very stressful.

Having a job and then covering up your Alzheimers lapses would have been impossible for me.  For me a very important part in dealing with my Alzheimers is avoiding stress.  With stress I get anxious and depressed. See pages 80, 81 and 82. 

Fourth mistake was to keep riding a bike. p 127

After his head injury from a bike ride he writes:

"Little did I know I had released a monster." 

The fifth most severe mistake that affected his family was thinking he could make major decisions about the care of his parents. 

He has Alzheimers yet when the family comes to the moment of whether to put his mother in a nursing home and the split vote comes down to him making the decision, he decided to keep her in her home with him.  

p 126 

"Confusion gave way to chaos. Mom began putting garbage into the trunk of her car..

I got angry at this point. 

I worked in nursing homes as a Geriatric Doctor.

My wife worked as a nursing home administrator. 

Family cannot do a good job of taking care of Alzheimers 24/7.

The stress will cause them to abuse the people they are taking care of.

Later Mr O'Brien proves my point on p. 139 when he yells at his father on his death bed:

"SO WHY DON'T YOU TRY NOW TO DIE WITH SOME DIGNITY , DAD, AND TAKE CARE OF MOM ALONG THE WAY."

 

p 136 "Dr Robert Harmon saw that my mother was moving from mid s stage Alzheimers to End Stage, called for family intervention.'

Author writes 'deep into confusion myself and quietly questioning my logic I cast the deciding vote to, Mom and Dad would stay at their home"

SIXTH MISTAKE: NOT SHARING HIS CONCERNS WITH HIS WIFE.

With Alzheimers it is essential to share the emotional with your wife. 

P 140 "I never confided in Mary Catherine (his wife) about this."

 

Fourth yearly MRI for non-treatment Alzheimers trial.

 Third MRI for AZ trial link August 2020

Today I had my fourth MRI in four years for a scientific trial (non-treatment) that I entered 8 months after my diagnosis of Alzheimers was made in December 2017. 

Last year I had QT prolongation on my EKG.

Subsequently my PET Tau scan was cancelled as dictated in the protocol. 

FDA approved drug used in Tau Pet scans link

“While there are FDA approved imaging drugs for amyloid pathology, this is the first drug approved for imaging tau pathology, one of the two neuropathological hallmarks of Alzheimer's disease, and represents a major advance for patients with cognitive impairment being evaluated for the condition.”

I was told the trial would start doing the Tau Pet scan with me next year.

My trial also reaffirmed with me that I was still willing to donate my brain for autopsy.  

I have never gotten the results of any of my Tau Pet Scans. 

While I remain in Mild Cognitive Impairment I will continue to the yearly scans.  When I get worse with moderate Alzheimers I will get a scan every two years.

It took me a while to get a neurologist to do a MRI on me on Feb 2017 link.

My trial mistakenly sent me the results of my first research MRI in Aug 2018.  I was impressed it showed I have normal volume in my hippocampus. 

Last month I asked if could get another Volumetric MRI of the brain where I could see the results.  My neurologist said it is not available in private practice.

So the MRI I had today I will never know the results of.  My brain autopsy results will be given about one year after my death.  

In Dr. Dale Bredesen's patients he has gotten follow up hippocampal MRI's in his patients to show they had restored their hippocamus to normal volume after they shrunk by the ReCode therapy.

Neuraceq 2014 approved to scan for Amyloid in Brain link

Last year  Tauvid (flortaucipir F18) used to look for Tau was passed. 

 Tauvid (flortaucipir F18) for intravenous injection, the first drug used to help image a distinctive characteristic of Alzheimer’s disease in the brain called tau pathology. 

Alzheimers will become epidemic in the next couple decades. 

It will probably bankrupt Medicare. 

Perhaps with early diagnosis people will do what seems to slow AZ advance?

However the issue must be made a priority by allowing Neuraceq and Tauvid scans covered for the elderly. 

Music for AZ

I had a song going through my head that I couldn't remember. 

I knew it was a Dixie Chicks song. 

Thus I asked Alexa to play their top songs.  

About the sixth song sounded familar.  

I posted the lyrics below. 

I usually have a difficult time hearing the lyrics but this time I listened carefully. 

I became very emotional when I realized what the song was about.

 Traveling Soldier by the Chicks. 

"He was waiting for the bus in his army green
Sat down in a booth in a cafe there
Gave his order to a girl with a bow in her hair
He's a little shy so she give him a smile
So he said would you mind sittin' down for a while
And talking to me, I'm feeling a little low
She said I'm off in an hour and I know where we can go
So they went down and they sat on the pier
He said I bet you got a boyfriend but I don't care
I got no one to send a letter to
Would you mind if I sent one back here to you

I cried
Never gonna hold the hand of another guy
Too young for him they told her
Waitin' for the love of a travelin' soldier
Our love will never end
Waitin' for the soldier to come back again
Never more to be alone when the letter says
A soldier's coming home

So the letters came from an army camp
In California then Vietnam
And he told her of his heart
It might be love and all of the things he was so scared of
He said when it's getting kinda rough over here
I think of that day sittin' down at the pier
And I close my eyes and see your pretty smile
Don't worry but I won't be able to write for a while

I cried
Never gonna hold the hand of another guy
Too young for him they told her
Waitin' for the love of a travelin' soldier
Our love will never end
Waitin' for the soldier to come back again
Never more to be alone when the letter says
A soldier's coming home

One Friday night at a football game
The Lord's Prayer said and the anthem sang
A man said folks would you bow your head
For the list of local Vietnam dead
Crying all alone under the stands
Was the piccolo player in the marching band
And one name read and nobody really cared
But a pretty little girl with a bow in her hair"

In Dr Daniel Gibbs book,  A Tattoo on my Brain on page 147:

" For reasons that are still not  fully understood, the abiltiy to enjoy, identify and even play music are often preserved even into the latest stages of the disease." (Alzheimers).

When I go for my mile walk each day, I listen to a playlist on my iphone. 

I hear the music directly into my hearing aides.  

I hear the nuances of the music and the words better than I ever have before hearing aides. 

To find new songs, I ask Alexa to play top songs of various artists I like or I recently heard of. 

I purchased a magazine about Bob Dylan. 

I was a senior in High School in 1969.  I liked the Beach Boys.

In college I liked the Beatles.  Of course I knew and liked Dylan but it wasn't till much later I realized how great he was.  I lisened to Cover treatments of his songs and appreciated him more.  

This magazine discussed why his top ten songs were so great.  This context helped me understand the music so much more. 

Final message: 

If you have early stage AZ start building your favorite songs onto playlists. 

The cheapest easiest way to TRY to prevent progression of Alzheimers.

 Most people can't afford $7,000 to enter a Dr Dale Bredensen's ReCode program. 

Also the supplements can cost $1300 a year. 

Most people don't want to take so many pills. 

So what does Medicare pay for?

1- Namzaric

2- Invokana for diabetes

3- Ozempic shots for DM and weight loss

4- Metformin for DM

5- Blood pressure pills 

6- Statins, Zetia.

7- Testosterone

8- Citalopram

Ask your Doctor which are good for you. 

In my opinion these are the pills that will prevent you from suddenly falling off the cliff with Alzheimers by a stroke, heart attack.

What supplements are needed?

1- Vitamin D (medicare should pay for lab test) 

Which diet?

Atkins or Low Carb High Fat diet to get into daily Nutritional Ketosis

Exercise

This is a very individualized item.

The elderly need to be careful to avoid injury. 

Walking 20 minutes a day is the easiest path. 

Then if anxious do pacing in the house to get up to 10,000 steps. 

If you can do more with weights, good.  I mayself have cut back on weights due to some joint pain but I try to do curls with light weights.  

Some advise HIIT ( high intensity interval  training).  I think this is fine for a younger group, not practical for eldlerly.  

My HIIT is going up and down the basement stair 10 times a day. 

It's probably the most dangerous thing I do all day.

Staircase disaster link

My Florida neurologist was worried about my falling and told me to walk in the pool 30 minutes three times a week.  I did it once.  After doing ten minutes I later realized I had hurt my right hip which still seems tight at time months later. 

 Have fun and socialize

Develop playlists of favorite music

A new fun experience with my wife

 

My daughter and her husband purchased a Saloonbox kit for me for Father's Day.  

I like mixology but the directions seemed complicated to me so I asked my wife to help me.

I have a home bar which I call The See No Evil Bar link

I make a great Manhattan each day.  That is 3 ounces of bourbon a day. 

I am doing the Recode protocol of Dr Dale Bredesen for Alzheimers. 

He allows some wine.  Four ounces of wine is only one ounce of alchol. 

I have a nutritional 'therapist' with Atma clinic link

I confessed to her that I have a cocktail each day, either a Manhattan or a Vodka martini.  

She gave me absolution. 

She said it 'anchors' my day.

It really does.  It's a mental activity that I enjoy.  I put off breakfast till 11AM and then I put off lunch with a Two PM Happy Hour. I have a small bag of pistachios with the drink. I often start a movie as well. 

This Saloonbox Strawberry mix took it a notch higher.  More ingredients.

I don't care for sweet drinks anymore but this was good. 

I had my wife check me on each step of the directions which was fun.

Fathers day was a while ago so it took me a while to do this new challenge. 

My wife's willing participation was what got me out of my apathy to try something new. 

I have read you should not drink 5 ounces or more of alcohol a day.  

With 2 glasses of Red wine I usually exceed that amount. 

Except for my subdural hematoma link, I have not had any medical problems with drinking. 

I am more careful now by drinking water between alcohol and waiting a while. 

I love to buy the beverage package on cruises.  I never went to bars when I was young but now I am a barfly on the cruise as it is great socialization meeting new people.  I often have 10 alcoholic beverages during the day. 

YOU CAN'T DRINK ALL DAY, if you don't start early in the morning.

I always start the day on the ocean at the baristic with an alcoholic coffee.  Then wine at lunch and dinner.  I have a cocktail at the bar before dinner and sometimes stop at the bar before bed. 

Most people reading this must go "tsk, tsk".

1- Too much alcohol?

2- My lipid panel levels  link on statin are too low? LDLc 31

3- I have been on Atkins since 2011 and in nutritional ketosis.

4- My systolic BP is usually between 90 and 120.

My reply is I have done better than expected with my AZ diagnosed in Dec 2017.

I am down to my lowest weight since my marriage 14 years ago. 200 pounds. 

I take Ozempic 1.0 mg a week which has helped with the last 10 pound weight loss. 

Depression, anxiety and apathy are a big problem with Alzheimers.

Citalopram

Ashwaganhda 

have helped that. 

People with chronic diseases such as obesity, diabetes and AZ need to find a way to deal with it as they are the ones who with True Grit and Fortitude must follow a regimen of multiple medications, supplements, diet and exercise to try and prevent the sudden falling off of a cliff that can occur with AZ due to stroke and heart attack.

I avoid hopelessness and apathy each with my cocktail 'anchor' each day.  

I am writing my fourth year book of how I have tried to enjoy my life despite the cloud of the inevitable fatal Alzheimers hanging over my head. 

Each year that I finish a book I feel a great deal of accomplishment. 

I am trying to give people first person documentation of how I am doing it with the goal that they will make their diagnosis early and realize with Mild cognitive impairment you have several years of life ahead of you.