5 Steps to prevent Heart Disease

Wednesday, August 21, 2019

Real life story of AZ patient losing sense of self

Mom’s Mirror Image Collides with Self Recognition with Dementia link

I hadn’t even realized that Mom was losing her own self recognition with dementia. My Mom often remarked that she was frightened by the “Old Woman” who constantly followed her but I had no idea who that woman might be.
For a long time, I thought it was an hallucination. But one day, as I stood beside Mom in front of  the mirror, she pointed to her own reflection and said, “There she is. That’s the Old Woman!  She’s scarey and she follows me every where.”
I was so taken aback that I didn’t know what to say. My Mom no longer recognized her own reflection. I put my arms around her in the only comfort I knew to offer, and told her that I would be sure the old woman never hurt her.
“She was only trying to make friends with you,” I explained.  Those words soothed Mom for the moment and that became my constant response to Mom’s fear of the old woman who followed her. It worked!
No matter  how silly it may seem, if it works–do it! Sometimes we only need to accept their fears, and find a resolution. We may never know how they’re really feeling.
I must add. Now that I’m in early Alzheimer’s myself, I watch my daughter repeating the things I told Mom.  I’m so happy she was watching those years ago.  
By late stage Alzheimer’s, my Mom’s eyes seemed fearful and worried most of the time, as though suddenly unsure of herself and the world around her.
As holidays near, it reminds me of her great discomfort in crowds or large groups. Please keep your loved ones feelings in-mind if planning parties or reunions or large get-togethers.
By middle stage Alzheimer’s, the patient is totally guarded and uneasy in large crowds with lots of chatter around them. It seems that the words come quicker than they are able to decipher and it leaves their mind in a twirl of confusion.
My comment in purple
I am in an early stage of AZ.  I would like to know people's experience with how long their relative remained in the early stage. 

Kevin made this cover for my second book


I published YEAR ONE last Feb. 30, 2019

I am 8 months into the YEAR TWO book.  I am confident it will be finished in Dec.

I guess the old adage, if you want to hide something put it in plain site is true.

If you want to do something for me follow my friend Billy's lead as described in his letter below.



Just before this letter from Billy arrived I specifically asked my sons to check my twitter feed  @brianedwardsmd and they have agreed.

I then knew I needed to reach out to my friends to follow and send a comforting word on twitter. You can send a private message on twitter as well if you prefer.

Socialization is important for Alzheimers patients and I found Billy wonderful for me personally.

I look forward to your comments on email or short comments on twitter.

Please don't write me that you just can't join one more social media account.  Thank you.

If you want to know how I am doing just check my twitter.  I can only write 144 characters.

Love,

Brian














Getting old composition on Facebook

George Dannewald posted this on Facebook

I have posted it on my blog giving a unique perspective as a Alzheimers patient posted in purple text.


A WINTER FRIEND 
AND THEN IT IS WINTER
You know time has a way of moving quickly and catching you unaware of the passing years. It seems like yesterday that I was young, just married, and embarking on my new life with my mate. Yet in a way, it seems like eons ago, and I wonder where all those years went. 
I know that I lived them all.
  I have glimpses of how it was back then and of all my hopes and dreams. 
But, here it is... the winter of my life, and it catches me by surprise... How did I get here so fast? Where did the years go and where did my youth go? I remember well seeing older people through the years and thinking that those "older people" were years away from me and that winter was so far off that I could not fathom it or imagine fully what it would be like. 
But, here it is...my friends are retired and getting grey... they move slower and I see an older person in myself now. Some are in better and some worse shape than me... but, I see the great change... Not like the ones that I remember who were young and vibrant...but, like me, their age is beginning to show and we are now those older folks that we used to see and never thought we'd be. 
Each day now, I find that just getting a shower is a real target for the day! 
And taking a nap is not a treat anymore... it's mandatory! Cause if I don't on my own free will... I just fall asleep where I sit! 
Check for sleep apnea.  I wear a sleep apnea mask and can avoid taking a nap.
And so... now I enter this new season of my life unprepared for all the aches and pains and the loss of strength and ability to go and do things that I wish I had done but never did!!
I had Alzheimer’s diagnosed in Dec 2017.  I have DM type two.  I believe that has aged me.  I benefitted from cataract surgery and new hearing aides. Wonderful.  I am blessed I have very little pain.  I find if I exercise daily with easy 20 minute walk, stretching for 10 minutes and 20 minutes of easy weight lifting I can get back into fair shape. I have given up skiing and bike riding due to poor balance. I am fortunate to have had a very full life with great family and travel and education. 
 But, at least I know, that though the winter has come, and I'm not sure how long it will last... this I know, that when it's over on this earth... it's over. A new adventure will begin! 
When your number is up, it's up.  I was fearful to die young as I desired to see the world. Now I am not so fearful.  I have an incurable disease and was worried I might not be me in two years.  I am 20 months since my diagnosis and will finish my YEAR TWO book on my Alzheimers  in Dec 2019.  Wondering how much time I have till I forget who I am has been difficult as I can't find books with timelines of the progress of the disease.  Most books are about the suffering of the family caring for the person.  I hope to finish 5 years of books about how I am doing with Alzheimers to give others hope.
Yes, I have regrets. There are things I wish I hadn't done... things I should have done, but indeed, there are also many things I'm happy to have done. It's all in a lifetime. 
So, if you're not in your winter yet... let me remind you, that it will be here faster than you think. So, whatever you would like to accomplish in your life, please do it quickly! Don't put things off too long!! Life goes by quickly. So, do what you can TODAY, as you can never be sure whether this is your winter or not! 
You have no promise that you will see all the seasons of your life... so, LIVE FOR TODAY and say all the things that you want your loved ones to remember.. and hope that they appreciate and love you for all the things that you have done for them in all the years past!! 
During my life I heard the refrain, "Live for Today." I found I couldn't do that and I didn't want to do it. First of all I had the goal of becoming a Physician.  I wasn't interested in partying.  After college I still had Medical school (4 yrs) Residency (4 yrs) Fellowship (2 yrs).  Planning the future was a major priority.  Remembering the past also very important. (I will lose that soon, right now it is mostly recent memory which is not so bad.  Enjoying the present very important but usually requires past and future brightness. 
"Life" is a GIFT to you. The way you live your life is your gift to those who come after. Make it a fantastic one. 
Remember: "It is Health that is real Wealth and not pieces of gold and silver." 
True but I would quote Victor Hugo, "Life is to Give" We can't often choose our health.
~Your kids are becoming you......but your grandchildren are perfect!
~Going out is good.. coming home is even better!  
~You forget names... but it's OK, because other people forgot they even knew you!!!  

~You realize you're never going to be really good at anything.... especially golf.
~The things you used to care to do, you no longer care to do, but you really do care that you don't care to do them anymore. 
~You sleep better on a lounge chair with the TV blaring than in bed. It's called "pre-sleep."
~You miss the days when everything worked with just an "ON" and "OFF" switch..
~You tend to use more 4 letter words ... "what?"..."when?"...??? 
~Now that you can afford expensive jewelry, it's not safe to wear it anywhere.
~You notice everything they sell in stores is "sleeveless?!"
~What used to be freckles are now liver spots.
~Everybody whispers.
~You have 3 sizes of clothes in your closet.... 2 of which you will never wear. 
~But "Old" is good in some things:
Old Songs, Old movies ... 
and best of all, our dear ...OLD FRIENDS!! 
Stay well, "OLD FRIEND!" 
Send this on to other "Old Friends" and let them laugh in agreement!

Tuesday, August 20, 2019

TEASE on cover for YEAR TWO BOOK on my Alzheimer’s




My diagnosis was made in 2017
I already published YEAR ONE
I am eight months into my YEAR TWO book.
This is a tease of what year two cover will look like.



Sunday, August 18, 2019

I post article praising movie Still Alice

Review of Still Alice link
by Boston Globe reporter 

I think this is a great review by BEVERLY BECKHAM.

I add my comments in purple.

It is very interesting to me as it shows her difficulty in getting published.

She eventually self published.

Very difficult to break through.


The reason I wrote a yearly journal on having Alzheimers



I read Pat Summitt's book Sum It Up link in October 2018.


I read B. Smith (patient) and Dan Gasby (husband, caretaker) book in Nov. 2018



I watched this yesterday 8-17-19





After reading the two books and watching the movie I realized how important my book,
I am waiting for when I forget I have Alzheimers
I had difficulty finding time lines on the progression of AZ in these patients and then I found out 
Still Alice was a compilation of several patients.

                                                       YEAR ONE LINK

I had difficulty finding time lines on the three stories above.
Since I have regular Alzheimer's I was interested personally on the time line.

I also was very concerned about the gloom and doom of the three stories and how hard they worked trying to improve.

I wanted to write a yearly journal to show people it doesn't have to be that way.











I choose not to struggle but I choose to have fun.

#2 on review of movie: I'm Still Here, Alice.

The movie, I'm Still Here, Alice, is about a fictional character.
I was very disappointed when I finally figured it out.
I should have known as there were incongruities in the character of Alice.
The author is telling us her version of what she thinks having early onset Alzheimers is about.

She does not follow the old saw, "The Alzheimer's patient doesn't suffer, the family does."

Even in the movie, the family does not suffer a great deal.
Difficult decisions are made but most of the family moves on with it's regular life.
Husband moves to new opportunity in his career in Chicago. Prodigal daughter returns to live with and care for Mom in the old home.

In the movie Alice says she is "not suffering, she is struggling"

No doubt this quote speaks much more to the truth than the old saw mentioned above. 

However, to struggle is a choice for a Alzheimers patient.

An except from the YEAR TWO book that I am writing now illustrates this on a review of the Pat Summitt Book.

I gave Pat Summitt's book, Sum It Up only two stars because I believe her approach is the exact opposite what a patient should do when they learn they have Alzheimer's. 
Don't fight. Have fun. Don’t struggle each day trying to improve memory struggling with word or math games. 














Instead I was told to have fun.  

I have a challenge with daily living coping with a poor short term memory.

As with people with terrible physical incapacities, they learn how to cope with their disability.

Blindness must be the worst.  I suspect the most suicide occurs in this group?

I accepted (as with many illnesses), there is no cure. I moved on to have a good life from which Alzheimers did not prevent me from having.

This why I am writing a yearly account of my Alzheimers.


Saturday, August 17, 2019

I watched movie: Alice I'm still here #1

Aug 17, 2019

Still Alice link to movie 

I saw this for first time. 
It it excellent.  
I didn't watch it last year because I didn't want it to bias the writing of my Alzheimers book.
Alice developed Early Onset Alzheimers disease at age 50.
I learned of my diagnosis on Alzheimers at age 65 just before my 66 year old birthday in Dec. 2017.
Alice disease and my disease are very different. 
Early onset Alzheimers can progress very quickly and the movie reflects this. 
I am waiting till I forget I have Alzheimers  published Feb 2019 reflects a very different path and prognosis.  
I had many similar experiences to Alice but I accepted my diagnosis as not having a cure and the goal for me was to have fun in my remaining days. Alice did her best, but in her speech to Alzheimers Association she said it had been hell.
Naturally the movie shows her emotional responses much more strongly than I had.
Alice states at one point: she "wishes she had cancer instead."
I have never felt this way. 
I am on  Namzaric as she was.  
Cancer has a great deal of therapy.  
It usually works but at great sacrifice to personal life. 
There is no physical pain with Alzheimers.  
In my last years I rather have no pain. 
Alice told her later self in a video to commit suicide with pills she the healthy Alice had hid away.  
As with most "plans of mice and men they usually go awry"

The sick Alice was happy to be eating her ice cream. 
That is all I want and someone to hold my hand. 

Update

I did more research later today and to my chagrin I found this:






Tuesday, August 13, 2019

Trying Task




Getting a drivers license renewed is always a challenging task especially for me when I was young in Brooklyn New York.  Big crowds, long lines, confusing situation the first time.

I am 67 years old now with Alzheimer's diagnosed since Dec 2017.

Yesterday I tried to renew my license  online.
First two times I stopped to look for information and was timed out.

The third time I believed I did everything correct and signed out.

I didn't see any more directions to follow.

Today when I did not get a confirmation letter via email, I worried.

I remember the DMV saying that it would take 7-10 business days.
We are leaving Florida on Aug 23.  This put stress on me which is difficult to deal with when making
decisions.

I called the DMV and to my surprise they answered with alacrity.

She  looked me up in her computer and said I was not on the list.

I asked what do I need to bring to the office?

 She responded, "Only your license and insurance card"

I thanked her, hung up and asked  my wife  "where is my insurance card?" She wasn't sure.

It was not in my wallet so I went down to the car and to my relief it was there.

We set off for the DMV office.  I found it easily on my laptop at home,

I should have written it down.

For some unknown reason I could not get SIRI to direct me to the DMV.

SIRI would give me several DMV's in St Lucie but not in Martin County.  We live on the border of the two counties.

Finally I called a St. Lucie DVM, she said she could give the phone number.

I said "please wait while I get a pen"

The pen wouldn't write.

I asked her to tell me the number and I did my best to scratch the paper with the number.
After we hung up Ginger and I were able to put the scratches with some memory
and I called the correct number. Ginger is driving all this time.  She had a general idea where the DMV was as we had been there a few years ago.

The agent told us she was on Willowbyes which Ginger then remembered as the correct address beginning with a 'W'.  We only had to remember 3 numbers of the address at that point.

I put it in GPS on iPhone just before the critical turn suffering no subsequent delay.

Still a stressful event for what should have been a simple task.

I had to take a vision test.

She told me to read the #5 line which was not in sequence in the three groups on the screen.

Finally she tells me it's in the green zone and I find it.

Not trouble to read the letters.  I'm glad I had my cataracts removed.
One eye lens for far vision and one eye for short vision.

I got my drivers license till 2017.

Happy happy Joy joy.

 It will probably be my last driver's license.

Last year in YEAR ONE book I wrote about doing several chores in Jensen beach.
I made numerous mistakes.
This year I went out with Ginger and had only one task to do.
Am I worse.  Probably, especially under stress.

I watched Bohemian Rhapsody, the movie about Queen.
"Who wants to live forever."
I may quote this at the beginning of my YEAR 2 book.





Monday, August 12, 2019

I have become more hopeful

I spoke to my cousin yesterday and he gave me some hopeful information about his father.
His Dad had Alzheimers for 10 years.

When my Alzheimers diagnosis was made  in Dec 2017 I was hoping for at least 2 good years mentally.

Now I am hopeful I will be mentally well for 5 years and live 10 years.

I was thrilled to finish YEAR ONE of my Alzheimer's chronicles.

I am into the 9th month of my YEAR TWO book.

I have a title already for my YEAR THREE book.

If I can finish 3 years of good life with Alzheimers I hope to dispel the general conception of a Alzheimers diagnosis as just being doom and gloom.

I hope with 3 years of books I will get some notice.  Get to a tipping point. 

Saturday, August 10, 2019

Tides and Turtles in Florida


At 9AM I while walking along the beach I though how lucky I was to have 3 mornings to walk along LOW TIDE.  It was 82 degrees with a light breeze. Not hot at all. No noticeable humidity.
I thought then this would make a good blog. 
The pursuit of happiness with Alzheimers.




Entrance from park facing south to miss you Condo



Turtle nest outside park entrance

Low
 Low Tide facing south

Low Tide


Turtle hole dug to cover egg nest above





Low tide 



 Turtle nest marked off
 Entrance pool side of condo Turtle next marked off
 Turtle rescue and view north
 View from my condo South
Turtle Resue people down on the beach.

Wednesday, August 7, 2019

New information for me about my Alzheimer's.


Follow up visit with my Florida neurologist.  
Dr Paul Elliot who made my diagnosis of Alzheimer’s very early in 2017 at the time another neurologist said to me what difference does it make. 
Dr. Elliot said most Family Practice Doctors feel the same way.  There is no treatment anyway so why diagnose early?
Dr. Elliot said that the new drugs trials may have failed but now the emphasis have switched to making the diagnosis as early as possible and then doing all the healthy things you can to prevent further damage to your brain. 
He listed:
1-Exercise 
2-Socialization
3- Treat your heart disease.
4- Treat hypertension and diabetes 
5- Mediterranean diet
I myself prefer  Low Carb High Fat diet or Atkins diet, especially for pre-diabetics and diabetes type 2.
He also told me something I had not known. 
Family Practice physicians will have patients stop their Aricept or Namzaric because of a side effect such as dizziness. The patient don’t see him, the neurologist, who ordered the medicine, for three months.  In that short period of 3 months the patient has a dramatic deterioration which they cannot recover from even with resuming the Namzaric. 
This is important information which I had not received before.
My last visit to Dr. Elliot was Oct.  I have two neurologists in Topeka but I wanted to continue with Dr. Elliot because he signed me up for a free PET scan on the last day of eligibility and made my diagnosis early in Dec 2017. My residence is in Florida and if I was sick here I wanted to have him available to me.

Comment on Dr. Paul Mason's 1 hour 12 minute pod cast with Ivor





Published on Jun 8, 2019
Dr. Paul Mason hour long pod cast in Colorado link 
I listened to the whole podcast.
Some subject I am well schooled in. I'm on LCHF since 2011. I have been DM2 since 1999. If Glycated LDLp was the most important risk factor I would be dead already because I keep my Hgb A1c around 7.8 Despite Atkins diet I have not had a level glucose as Paul suggests would be okay. I am healthy because I take statin and keep my LDLp below 750. If you have a low level of LDL particles it doesn't really matter how many of them are small in size. I advised CAC for my patients with one risk factor. Paul and Ivor agree with me. Paul gets yearly CIMT on his patients to monitor progress of plaque. I asked patients to get them every 2 years. Ivor doesn't like CIMT's because he thinks many are done by non-skilled ultrasound tech and unreliable places that sell them. There are solutions to those concerns. I have been getting mine at a apheresis clinic with the same tech each year at Kansas University Medical Center. Many of the ideas Paul has are interesting but not substantiated. Lp(a) greater that 50 is likely an inherited disease. I doubt there are healthy LDLp. Paul and Ivor talk about a patient with LDLc or p? of 2200. As Dr Krauss says, long term exposure to those numbers are toxic.   Find a few dark swans does not change that model.  The lower the LDLp the better.
I look forward to long term data (5-10) years of Dr. Mason's 500 patients.