This is Year Five in my series of the progression of my Alzheimer's disease since it was first diagnosed in December 2017.
Year One was titled I am waiting for when I forget I have Alzheimer's
Year Two Traveling with Alzheimers
Year Three The Pursuit of Happiness with Alzheimerss
Year Four Alzheimers is Inexorable.
My wife had a long career running different types of nursing homes. We talked about when she would no longer could take care of me. She thinks she can't leave me at home by myself for six days. She watched me walk down the hill with the dog and trying to keep up, I ended going faster and faster and the big dog caused me to step on the grass which threw me off balance. She thought I was going to fall. I didn't but I have fallen in the past. Once with a black eye. My first black eye link, then my concussion link. I still drive, still cook, still walk outside, I don't get anxious when she goes to her daughters for two days. When to move an Alzheimers patient to a home article link 1-Medication management I take 12 medications not counting several supplements. I have a routine and rarely miss pills. I also call in my own prescriptions from my Doctor. 2- Mobility 3- Wandering I take a mile walk each day. I take my iPhone with me. I go in a circle, same route everyday. 4- Caregiver stress I have told my wife I have no problem going to an Independent living facility if she feels I am too much for her to take care of. My biggest fear link 5- Long distance caring 6-Rely on a plan not a promise
The Basic Living Skills assessment includes:
Self- Management.
My wife pays the bills and makes the travel arrangements.
Basic Communication.
I wear hearing aides but still need to ask people to repeat their sentence as their syntax will confuse the message for me. Previously I could infer what they meant as my intuition as always been good.
Dressing.
Twice I tried to put my shirt on as pants. Didn't work and it took a while for me to figure it out.
Toileting.
Other than getting up five times a night to urinate. Once I did pee in the corner of the room.
Grooming.
I cut the long hairs in my nose. A real surgical procedure.
Bathing.
No problems
Health, Safety, and First Aid.
I put my own band aides on. I do finger sticks on myself for glucose and ketones each morning .
Nght-time Routines.
I checked my testosterone level recently it was extremely high and I had to stop testosterone immediately. Four months ago my dose was increased 40 mg but I was having trouble figuring how much to draw up with the syringe. 100 mg was easy as it was one half a cc. I was giving myself a shot in my butt.
I exercise each day.
I walk each day.
I stretch each day
I take my meds in AM and supplements in afternoon.
Remember that the density of ice is 0.92 g/mL, and the density of water is 1.0 g/mL (1.03 for salt water). This means that ice has nine-tenths, or 90 percent of water's density – and so 90 percent of the iceberg is below the water's surface.
I participate in a ZOOM conference each week with a group of Episcopal men. Another retired Internal Medicine physician joined the group a month ago. He wrote me this week that he didn't think I have Alzheimers. link People don't think I have Alzheimers The Doctor thought he was being kind telling me his opinion which is based on having treated many Alzheimers. I guess he thought he was giving me hope. He seemed to take offense when I pointed out how my diagnosis was made by three different Neurologists. He wrote back that a positive PET scan for Amyloid plaques can have a rate of false positives of 20%' I agreed and said my diagnosis is based on sequential cognitive tests that are 3 hours long. I also have one gene for Alzheimers. I am not judging my colleague as I myself knew nothing of what to expect for myself when I first had the diagnosis in Dec 2017. Surprising since I am board certified in Geriatrics and have treated many patients with dementia in nursing homes.
Just because someone passes the MOCA test does not rule out dementia. This is why I started my series of books written in the first person perspective. There is no other book on Alzheimers that does this. The ones I have read have been on famous people with early onset Alzheimers and a rapid deterioration. They are filled with gloom and doom. I wanted to show people it is not that way for many years. I am in Year 3 now. When I was first diagnosed I looked up my prognosis. Even with Namzaric I could maintain my present level of function for 2 years but after that there would be a steady decline. It is 100 days till the Presidential election. I was very afraid I wouldn't be able to follow the campaign and the results of the election. This year I understand politics better than ever in my life. It is very gratifying. People need to understand the iceberg of Alzheimers.
Thus if people don't see an obvious dementia they think there is no disease.
My friend quotes passages from Canterbury Tales at age 65. I asked him if he has a photographic memory? He said "yes but it is out of focus." Paragraph above comes from this ink I wonder if these people get Alzheimers? My neurologist said people who are very smart notice memory loss earlier than other people. I imagine someone with photographic memory would recognize memory loss very early in the disease.
Go halfway down the blog to start a great Scientific American article saying: Morals not Memories Define who we are. I edited it so that an Alzheimers patient can read it easily People who remember everything HSAM link
This is why I have said: "Memory is not all it is cracked out to be
Morals not memories define who we are link Article is below edited by me to make it for easier reading "Have you ever wondered just what it is that makes you, you?
If all your memories were to fade away,
would your identity dissolve along with them?
Would friends and family no longer perceive you to be the same person as before? For the 5.3 million Americans experiencing memory loss due to Alzheimer’s disease, these frightening questions are more than just theoretical.
Fortunately, science appears to suggest that being robbed of one’s memory does not equate with being robbed of one’s identity.
has found that “who one is” is largely defined by one’s moral behavior, and not by one’s memory capacity or other cognitive abilities.
Thus, although Alzheimer’s and other neurodegenerative diseases may powerfully impact the mental functioning of individuals, sufferers can find some solace in the fact that substantial memory deficits—when unaccompanied by changes in moral characteristics—
seem to have no effect on how others perceive“who you are.”
Determining the factors that define one’s identity is an old philosophical problem that first received serious consideration in the 17th century by the early British empiricist, John Locke.
In other words, who one is critically depends upon what one remembers.
Thus, as a person’s memory begins to disappear, so does his identity.
This notion of identity as memory has received experimental support from psychology research.
A 2004 study followed Alzheimer’s patients and found that those exhibiting impairments in autobiographical memory—one’s knowledge of their own past experiences and events—on standard psychological tests showed changes in the strength and quality of identity.
The strength of identity was measured by the number of unique statements given by the patient in response to the question, “Who am I?” while the quality of identity was measured by the abstractness of their answers, i.e., their lack of specific details. These findings seem to imply that autobiographical memories create a continuous first-person narrative that helps form a sense of self.
However, other scientists remain unconvinced of Locke’s premise, as some theorize that more central to identity is moral capacity—a variable that these previous studies did not adequately control for.
Evidence for this idea comes from social cognition research that has found that impression formation is largely dependent on the moral dimension. In other words, how we see people—whether they are positive or negative, to be approached or avoided—is mostly determined by our assessment of their moral character, and not their intellect, knowledge, or other personality traits.
The concept that morals are essential to identity is aptly known as
the essential-moral-self hypothesis.
Researchers from the University of Arizona and Yale decided to investigate this hypothesis directly in a real-world clinical population.
Their study was designed to test what types of cognitive damage cause people to no longer appear to be themselves to others.
A crucial element of the design was testing for changes in identity from the perspective of a third person observer, rather than the individual himself.
In addition to sidestepping many of the reliability problems intrinsic to first-person accounts, focusing on perceived identity allowed the investigators to assess the effects of memory and moral changes on the patient’s relationship with others.
This is an extremely important facet because when someone appears to be “not the same person,” the social bonds between patients and loved ones or caregivers quickly deteriorate. These bonds are critical to one’s well-being and health, as they are the source of the connectedness one feels to the people in their lives and the outside world.
The investigators recruited 248 volunteers with family members who suffered from one of three types of neurodegenerative diseases.
Patients had either Alzheimer’s disease, frontotemporal dementia, or amyotrophic lateral sclerosis (ALS), each of which are characterized by relatively distinct cognitive and behavioral changes. While ALS primarily affects motor but not mental function, both Alzheimer’s and frontotemporal dementia affect cognition. However, where
1-Alzheimer’s strongly affects things like memory and IQ,
2- those with frontotemporal dementia tend to undergo changes in moral traits—i.e., things like honesty, compassion, decency, and integrity.
The participants, most of who were married to or romantically involved with the patients, were instructed to indicate how much the patient had changed in 30 trait categories since the disease began;
15 were related to morality and the other 15 to personality.
To evaluate the degree of change in the perceived identity, participants were asked to give information regarding any differences in their relationship with the patient that had occurred over the course of the disease’s progression. For example, they were asked questions like,
“Does the patient ever seem like a stranger to you?” and
“Do you feel like you still know who the patient is?”
Analysis of the data revealed that participants perceived the greatest disruptions in patients’ identity when they observed changes in moral traits. Other cognitive deficits—like those seen with amnesia—had no measurable effect on the perception of identity. Consequently, those with frontotemporal dementia showed the greatest changes in perceived identity, since it specifically affects the frontal lobe functions underlying moral reasoning and behavior.
Interestingly, those with ALS showed no significant change in perceived identity despite the greatly distorted physical appearance that results from the widespread deterioration of motor function. Although there was minor change in identity perception in those with Alzheimer’s, this was associated with changes in moral traits and not memory loss.
These findings have important implications for patients with neurodegenerative diseases
. Efforts aimed at helping sufferers to understand themselves in terms of their moral traits—characteristics like
1-altruism,
2- mercy, and
3-generosity—
can restore their sense of identity and control as memory fades or cognition declines.
Simply knowing that others continue to perceive them as the same person, even when they feel that their own identity is changing, can allow them to securely protect their sense of self.
Additionally, the results highlight the need for future neurological interventions and clinical therapies that specifically focus on maintaining those cognitive faculties involved in moral function in the face of disease.
He said that my diagnosis of Alzheimers was made early.
I was considered to have Mild Cognitive Impairment.
He suggested we now call it Prodromal Alzheimers disease.
I told my neurologist that I was getting worse with short term memory.
My concurred with that opinion.
He asked me if I thought I could go back to being a physician.
I said I am not even close to that.
He said that could be a functional deficit, however I medical Doctor requires a high level of cognition.
I said my math is very bad.
I was able to tell him how many nickels in $1.35.
I said there are 20 nickels in a dollar and the 7 nickels in 35 cents.
Thus 27 nickels.
I was having a good day.
He prognosticated that I would have another good year.
I told him I was a more hopeful than that.
He told me to keep doing what I am doing and stay on Namzaric.
February 20, 2020 I did better this year on my MOCA
(Montreal Cognitive assessment) than I did the prior two years.
I had a perfect score 30. I didn't miss any questions. Normal is a score greater than 26 Dr Elliot was most impressed that I remembered the five words: truck, banana, violin, desk, green when I finished the test. I told him I changed it to green banana truck and then just violin desk in shape of violin.These are all the words that start with "S" that I could name in one minute.
I was very pleased with my MOCA results. I still do badly with math.
I have been on Intermittent fasting since last Nov I will stop IF tomorrow morning and start eating breakfast and lunch again.
DATE Time GLU MAX GLU CONTOUR 6-25 5:41AM 146 121 End of 13 hour fast 12:45 PM. 165 6-26. 11:24 AM. 173 End of 15 hour fast 2:45 PM 196 6-27 10:00 AM. 176 End of 15 hour fast 2:10 PM 180 6-28. 9:23 AM 164 End of 14.5 hour fast 1:30 PM 182 6-29. 9 AM 164 End 14.5 hour fast 1:40 PM 178 6-30. 9:45 AM 162 End 15 hour fast 2:00 PM 165 7-1 8:50 AM 155 End 13 hour fast 12:10 PM 166 7-2 4:23 AM 147 End 17 hour fast 1 PM 165 7-3 9:50 AM 157 End of 16 hour fast 3 PM 136 7-4. 10:35 AM 146 163 End of 16 hour fast 3:00 PM 180 167 7-5 10:35 AM 146. 163 End 16 hour fast 3:00 PM 180 167 7-6 9:00 AM 160 115 End 14.5 hour fast 2:30 PM 160 173 7-7. 8:30 AM 182 185 End of 13.5 hour fast 12:30. PM 198 195 7-8 8:15 AM 175 168 End of 14 hour fast 1 PM 193 166 7-9 5 AM 156 145 End 15 hour fast 2 PM 168 152
The last three days I have had anxiety around 11 am.
The first day I thought maybe it was from too much caffeine.
I cut out all alcohol that day.
I did not feel like drinking
The second day I had no caffeine and I still had anxiety.
I had some wine before bedtime as I was thinking my hunger from intermittent fasting was causing stress and thus anxiety.
Indeed breaking my fast around 2 PM does help immensely.
The third day I went back to morning coffee, Diet Coke and Green tea.
Still had anxiety but this time not as bad or for as long
as I started pacing as soon as I began to feel it so that it didn't crescendo.
Then I turned off news an internet early and started watching the BBC series Foyle.
This helped curb the attack earlier.
I then took my mile long walk and dumbbell exercises earlier and it pretty much ended the anxiety.
While walking I also said a mantra of "sha" "ta" "nah" "mah".
Alzheimers society suggests doing this in a quiet room for 20 minutes while sitting.
I found that too boring.
However while walking it was not difficult and it seemed to help
I have decreased my anti-depressant Citalopram because I started Contrave.
Contrave is said to increase citalopram levels.
I think because my anxiety is from Alzheimers I will need to go back to full dose Citalopram.
Anxiety is very uncomfortable.
Fortunately I don't get it a night and I sleep well.
June 10 update I decided after 8 months of Intermittent Fasting the stress of being hungry has raised my cortisol levels and maybe my anxiety.
A newly released model predicts that a total of 208,000 Americans will have died from COVID-19 by Nov. 1.That model, from the University of Washington’s Institute for Health Metrics and Evaluation, also projects that if 95% of people wear masks, 45,000 fewer Americans will die.
As of Tuesday, more than 131,000 people in the U.S. have died from COVID-19, according to data compiled by Johns Hopkins. The worldwide death toll is over 540,000.Previously, the Institute for Health Metrics and Evaluation model extended until Oct. 1, and it was predicting 175,000 deaths by that date.“Many states are expected to experience significant increases in cases and deaths in September and October,” Director Dr. Christopher Murray said in a press release. “Those who refuse masks are putting their lives, their families, their friends and their communities at risk.”
Seeing as projecting reported deaths from a 8-month-old virus is not an exact science, the institute’s model actually provides a death range, predicting between 186,000 and 244,000 if the current trajectory holds.
An alternate, mask-wearing universe would have between 151,000 and 177,000 total deaths by Nov. 1, according to the new model.
Several different institutions are currently attempting to predict exactly how many people will die from coronavirus.
Magnesium for the brain? A supplement probably won't hurt you if you don't have renal insufficiency In 2015 I thought this was the best article on Magnesium
"Approximately 99% of total body magnesium is located in bone, muscles, and soft tissues; 1% is extracellular.[1]
Thus, plasma or serum magnesium levels are only a rough approximation of amounts of magnesium.
Substantial hypomagnesemia does indicate magnesium deficiency, but normal blood levels do not dependably exclude significant depletion of magnesium stores."
From James DiNicolantonio twitter
@drjamesdinic
Magnesium article from NERDlink
When I look at these studies, it seems the dose of magnesium is too low.
I learned this from personal experience.
I was told from someone who knew the supplement industry that Magnesium maleate was best salt
for muscle cramps
I was taking 400 mg/d. I still had nocturnal leg cramps
I started 3,750 units of Magnesium/daily. My severe nocturnal leg cramps disappeared.
I knew that Magnesium L-Threonate was considered the best version for the brain, especially to calm the brain for sleep. Dr. Dale Bredesen agrees with this in his book, The End of Alzheimers. I review his book here: My Amazon review link Experts will not accept this 36 point program link Below is from The End of Alzheimers: I decided to switch from Maleate to L-Threonate after reading below:
I take 4 capsules a day for the suggested dose on the bottle. I am definitely not calmer. I do get anxious at times and need to pace to relieve mild anxiety. I usually don't have difficulty with sleeping so it is difficult to tell if it has helped my sleep. I take it on the slim chance it is better for my AZ. Unfortunately, my nocturnal legs cramps have returned but not so bad so I will continue L-Threonate. Current Medical Diagnosis and Treatment 2020:
Prior blog on anger link This past week I hung up on my best friend during a phone conversation. I had called him about a twitter thread I had written which he had responded to. I didn't understand his twitter response to my thread about predicting the future number of COVID deaths by Nov. 3. Calmly I finally figured out what his twitter was about.
My mistake was to then analyze how he came to these numbers. He said he agreed to follow me on facebook but he didn't sign on to an in depth study of this subject. I then began to get angry and it escalated quickly as he calmly was making excuses when I had already understood his position. He continued to explain his position in calm terms. I just hung up. I apologized the next day which he graciously accepted.
I already lost another life long Brooklyn friend from High School days. I was getting after him about getting surgery for his normal pressure hydrocephalus. I wasn't anger but I was intense and told him I wish I could have surgery to help my Alzheimers. He stopped answering my calls. He told my other friend that I had disrespected him. My neighbor and I got into a bad argument over my behavior at his Christmas party. It was mostly my fault but again as he laid into me I gave it back to him in kind. We stopped taking for two weeks but I bought him a bottle of scotch which he didn't want to accept but I said now you won't accept a gift from me at Christmas. He relented and he took it. We are friends again but we avoid discussing politics. So far I have successfully been very careful with my three adult children.
My wife and I are doing much better at not accelerating the heat of disagreements.