Good news yesterday from my endocrine Doctor.
He said starting insulin may improve my energy level.
I hope to exercise more
Lab result;
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.
Good news yesterday from my endocrine Doctor.
He said starting insulin may improve my energy level.
I hope to exercise more
Lab result;
On Oct 24 I had a very busy day. I usually just rusticate in my basement man cave due to my usual of lack of energy.
I had an appointment for eye exam to get Px. glasses.
We went to Cold Stone for Ice cream which was a big treat since we never do it.
I guess I overdid it because my fasting glucose was 437 ketones zero on Oct. 26.
My ketones are always at least 0.5.
Then we went to get our Covid vaccine.
Ginger said I was walking well all this time.
On Oct 25 I started being very unsteady on my feet and Ginger my confusion was much worse.
On Oct 26 Ginger said I returned to my baseline. She thinks it was due to my Covid shot.
I think I was recovering from a big active day.
My arm was sore when I went to sleep.
My glucose today at 1:30 PM today fell to 380 thanks to my Invokana.
Earlier this week, the pharmaceutical companies Biogen and Eisai announced encouraging results from a clinical trial for patients with Alzheimer’s disease: a monoclonal antibody treatment, called lecanemab, reduced cognitive decline by 27% in people with early-stage Alzheimer’s compared with those on a placebo after a year and a half. Outside observers say the trial could offer hope to some of the millions of people afflicted worldwide, who are largely bereft of treatments.
Amid the excitement, however, many questions linger, including why this treatment shows promise when others based on a similar strategy have failed. For years, researchers have tried to target a signature feature of the illness: a buildup of amyloid plaques in the brain, clumps of protein that disrupt neurons and other cells. But drugs that break down or otherwise inhibit these plaques haven’t clearly subdued symptoms. The new treatment is, apparently, the first to do so.
The field has been roiled in controversy: Another Biogen drug, aducanemab, was approved by the Food and Drug Administration (FDA) last year over concerns that, despite clearing away amyloid plaques, the evidence it alleviates patients’ symptoms was unconvincing. No other approved Alzheimer’s treatment targets the disease’s presumed roots, only its symptoms. Before aducanumab, U.S. officials hadn’t greenlighted an Alzheimer’s drug for almost 20 years.
Science spoke with Alzheimer’s experts about this week’s announcement and what’s next for lecanemab and the field.
In a press release, Biogen and Eisai shared outcomes of their study, which included 1795 people with early-stage Alzheimer’s disease. The participants were randomly assigned to either receive lecanemab or a placebo, given via an intravenous infusion every other week for 18 months. The primary test was comparing cognitive decline between the two groups, based on a classic dementia scale called Clinical Dementia Rating-Sum of Boxes (CDR-SB). “I grew up using it and love it,” says Joy Snider, a neurologist at Washington University in St. Louis, of the assessment tool, which was developed at her institution. She heads the Knight Alzheimer’s Disease Research Center Clinical Trials Unit there, which enrolled nine patients in the lecanemab study. One advantage of this assessment, Snider says, is that it includes information from family members on how patients are faring, along with other measures.
In the study, people getting lecanemab still had cognitive decline, but it progressed 27% slower than in those on a placebo. That translates to 0.45 points on the 18-point CDR-SB. Although the difference is modest, it’s spawning hope. “This does make us feel a little better. These drugs do work,” Snider says.
Lecanemab had side effects, most notably certain brain abnormalities seen with other antiamyloid therapies, including swelling and small hemorrhages in the brain. Neuroimaging turned up these concerns in about 21% of patients on lecanemab, and 9% of those on the placebo. Although these abnormalities often produce no symptoms, about 3% of those getting lecanemab did have symptoms from them.
Doctors aren’t sure how the apparently gentler slope of cognitive decline would be perceived by patients and their families. “Does that mean that grandma is going to have a few better days, a few better months, a few better years?” asks Jonathan Jackson, a cognitive neuroscientist at Massachusetts General Hospital (MGH). “It’s still an open question.” He and others hesitate to make grand pronouncements, especially after last year’s flameout of aducanemab. “We’re all feeling a sense of wariness and caution,” Jackson says. “We want to dig into the data before we make any large conclusions.”
No one knows for sure, but there are some theories. One is that lecanemab works a bit differently from other antiamyloid drugs. Some “try to bind or remove amyloid once it has aggregated into these large plaques,” Jackson says. Aducanemab, for example, primarily binds to amyloid protein after it has clumped together. Lecanemab, on the other hand, swoops in at an earlier stage, targeting “protofibrils,” strands that will consolidate into plaques but haven’t yet. Evidence across many trials and other research suggests the earlier in the disease process one goes after amyloid plaques, the better. For that reason, says Jackson—who describes himself as an amyloid skeptic—lecanemab “has always been one we had a lot of hope for,” even years ago when it was in early development.
The length of the lecanemab trial also made it easier to detect differences between patients not getting the experimental treatment and those who were. Assuming an Alzheimer’s drug works, the effect “will be bigger the longer your trial happens,” says Bart De Strooper, director of the UK Dementia Research Institute at University College London. And indeed, Biogen and Eisai noted that lecanemab failed to show a meaningful impact on cognition after 12 months, but did at 18 months.
The trial also included only people who had evidence of amyloid in the brain—something that’s been true of more recent trials but not older ones studying antiamyloid therapies, De Strooper says.
One notable feature of the lecanemab trial was that about 25% of its participants were either Black or Hispanic, a relatively high number in the world of clinical trials, where marginalized groups are woefully underrepresented. “We’d like to think that people have equal access to our science,” says Jason Karlawish, co-director of the Penn Memory Center at the University of Pennsylvania, but practically speaking, they often don’t.
Furthermore, these populations also have a higher risk of Alzheimer’s disease than non-Hispanic white people, for reasons researchers don’t fully understand. “We want a drug that works in everybody,” Snider says, another reason trial diversity is so important.
For Jackson, who studies the impact of diversity and inclusion in human subjects research and directs the Community Access, Recruitment, and Engagement Research Center at MGH and Harvard Medical School, the new trial’s population presents an opportunity to research this disparity. According to one theory, dementia risk might be greater in Black and Hispanic people because they have higher rates of diabetes and cardiovascular disease, which can impact the brain, he explains. Probing how well lecanemab—“an antiamyloid therapy which really focuses on a pure presentation of Alzheimer’s disease”—worked in Black and Hispanic participants could offer biological insights into their illness. “I think this is going to be the first opportunity for us to have enough data on ethnic and racial minorities” in an Alzheimer’s trial to tease apart that information, Jackson says.
Lecanemab is “not a cure, it doesn’t make people better,” Snider cautions. But she’s excited that it’s targeting known disease pathology and has some effectiveness in patients. (Still, scientists caution that especially after the aducanumab experience, they’ll feel more comfortable once the companies release more complete trial data.)
Other antiamyloid antibodies are in trials, and De Strooper says he’d love to see the development of small molecule drugs that can be swallowed instead of injected. Lecanemab’s impact on patients so far appears modest, but Jackson hopes emerging therapies “out in 3 or 4 years may be much more significant shots on goal.” Superior performance could come from researchers learning how to build better and safer antiamyloid therapies, he says, as well as determining who is best suited to receive them.
That said, “I still think we can’t just focus on amyloid,” Snider says. Future antiamyloid treatments may be an improvement over this one—or they may not. “This drug may be just as good as we can do” with that strategy on its own, she says, especially in people who already have symptoms. “We don’t treat cancer with one drug, we have a cocktail,” she says. Physicians need a similarly diverse toolkit for Alzheimer’s disease, where inflammation and other factors are also key drivers.
A lot! First, researchers want to see more data from the lecanemab trial, which the companies say they’re planning to release in late November. Biogen and Eisai have applied for accelerated FDA approval. If it’s granted, there’s much interest—and some trepidation—about how the rollout of lecanemab will proceed in the real world. Snider wonders whether people on anticoagulant drugs, which reduce blood clots and which many older people take, may be at higher risk of brain bleeding from lecanemab. “That’s going to be a big question,” she says.
Karlawish wants more information on how patients fare long-term. Right now, assuming the companies’ announcement aligns with their trial data, the therapy seems “worth taking” or at least considering by those for whom it’s designed. But, “What haunts you in clinical practice is how long does the drug work and how long should you continue it.” He and others also worry that Alzheimer’s clinics aren’t equipped to handle a therapy like this, which requires infusions for potentially many patients and likely imaging to look for side effects. Karlawish would love to see a registry that tracks people on the treatment in order to help guide doctors and families facing difficult choices. “We don’t have an adequate workforce to roll this drug or a drug like it out into clinical practice,” where patients have enough trouble just getting a diagnosis, he says.
Lecanemab is now being tested in people with evidence of amyloids—and, often, familial or genetic risk factors—but without symptoms. A burning question is whether the therapy can stave off dementia. At least a decade before glaring symptoms, there must be subtle signs of disease, De Strooper says. Preventing them from worsening is another frontier.
What to expect with Alzheimers link
Presently I am writting the YEAR 5 book to be titled: Trying to Avoid Falling Off Cliffs.
I read that Namzaric could keep me at a level cognition for 2 years.
Then I learned it was usually a heart attack or stroke to cause a sudden severe drop in cognition.
I have had 2 falls with 2 cerebral bleeds.
After the subarchnoid bleed my navigation skills became worse.
SAH link
Falling off a Cliff link
Subdural hematoma link
I was surprised how sensitive I became. Especially in having arguments with my wife. Very stressful and I would be depressed the rest of the day.
I am also surprised how easily I am fatigued. Long phone calls can cause it. I say goodbye to friends and family because I get tired.
I also lost interest in doing many things especially leaving the home to go on little trips. I rather stay in the comfort of my TV and man cave. I still like grocery shopping. Last week my Aide drove me in her car to Sams and I bought $296 worth of groceries on my own.
I regret not doing balance exercises after I first noticed was having balance problems
Back in Idaho I purchased a DEXA scan.
The hospital in Burley didn't have one.
I took a course in Washington state to learn how to interpret them.
Pretty simple.
I also learned how important giving enough vitamin D.
I began checking my patients levels in Jan
To my surprise the advised dose of 1,000 IU was often not sufficient for even the low levels that were considered normal at that.
Subsequently in my book The Tubby Traveler from Topeka, I told people to take 5,000 IU a day.
Dr Swerdlow tested me the usual way that he does.
Because he does the test each time it improves the accuracy of the test. He said I did a little worse this year but considering I had a subarachnoid hemorrhage link, he said the difference from last year was not significant. I know my naviagating skills in a new setting is very bad and Ginger believes I clearly have a cognitive decline since my March fall and SAH athough as she watched me do the test she was impressed how I remembered the different memory tests. Especially, when I a drew a complicated picture of boxes and triangeles after a 15 minute delay. She sees me not remembering so many short term memory things such as my appointments, whether I got the mail, conversations we had. I have had this type of short term memory since August 1, 2020 when I made this TOCA TEST LINK.
Dr Swerdlow wanted me to get an MRI because of urinary incontinence to rule out Normal Pressure Hydrocephalus.
My recent memory is bad but I can still get by for a short period with my wife gone to Europe.
I have maintained the following skills:
1- Take my medicine in the morning.
2- Monitor my BM's so I don't get constipated. I recently started stool softener and prunes.
3- Deal with my 2 TV remote controls.
4- Sign on the internet to write blogs and twitters
5- End my AM fast with a Salom sandwich Salmon sandwich link
6- Order TV discs on Amazon .
7- Call friends and family.
8- My many supplements link
9- I don't drive anymore and I am running out of my favorite foods;
Can of soup which only takes 4 minutes in microwave.
oi Premade packages of Chopped salad
Fry hot dogs
I am satisfied with these meals. I don't drink alcohol anymore.
8- Despite taking my Ozempic shot each week, I stll feel hungery so I have a snack every hour.
Pear
Plum
Pistachios
Yogurt
Premium protein drink each day
I finally got my glucose under control by stopping ice cream
Many failed attempts to get TV to work.
I did all the usual things to fix it.
1- Is TV plugged in?
2- Change batteries in remote control.
3- I called Cox to make certain I was connected.
The real problem was my wife is in Europe and I couldn't get her to check my work.
I did change the batteries but I think I replaced with more bad batteries. I changed the batteries again and that solved the problem.
My 85 inch smart TV allows me to record all my political shows. It also allows me to fast forward on the recorded shows.
I rely heavily on my morning TV for news of the day.
Especially Morning Joe which I find very entertaining.
All the energy I spent on trying to solve this problem makes me fatiqued.
Anxiety not too bad, especially as I resolved the probem.
On my first visit to the memory center I was told not to spend too much time on TV and Computer.
I don't know what I would do without them.
Socialization is fine but people don't understand the rules of engagement with Alzheimers.
During deep sleep, the brain appears to wash away waste products that increase the risk for Alzheimer's disease.
A host of new research studies suggest that this stage of sleep — when dreams are rare and the brain follows a slow, steady beat – can help reduce levels of beta-amyloid and tau, two hallmarks of the disease.
"There is something about this deep sleep that is helping protect you," says Matthew Walker, a professor of neuroscience and psychology at the University of California, Berkeley.
The research comes after decades of observations linking poor sleep to long-term problems with memory and thinking, Walker says. "We are now learning that there is a significant relationship between sleep and dementia, particularly Alzheimer's disease."
The strongest evidence involves deep sleep, he says. That's when body temperature drops and the brain begins to produce slow, rhythmic electrical waves. (I do get cold at night during sleep)
So Walker and a team of scientists set out to answer a question: "Can I look into your future and can I accurately estimate how much beta-amyloid you're going to accumulate over the next two years, the next four years, the next six years, simply on the basis of your sleep tonight?"
To find out, Walker's team studied 32 people in their 70s who had taken part in a sleep study that looked for the slow electrical waves that signal deep sleep. None of the participants had memory problems.
The scientists used brain scans to monitor levels of beta-amyloid in each participant for up to six years. And the results, published in the Nov. 2 issue of the journal Current Biology, showed people who got less deep had more beta-amyloid.
"We have a specific sleep signature right now that seems to help us better understand where you may sit on the Alzheimer's risk trajectory in the future," Walker says.
Other studies have found that a lack of deep sleep is associated with higher levels of tau, which forms toxic tangles inside the brain cells of people with Alzheimer's.
Scientists have some ideas about why deep sleep seems able to reduce both beta-amyloid and tau.
In 2013, a landmark study of mice found that their brains switched on a sort of dishwasher during sleep.
"So things like amyloid beta, which are implicated in Alzheimer's disease, seem to actually be removed more rapidly from the brain when an animal is asleep versus when they're awake," says Laura Lewis, an assistant professor of biomedical research at Boston University.
In 2019, Lewis led a team that showed how this dishwasher works in people.
"We realized that there's these waves of fluid flowing into the brain during sleep," she says. "And it was happening at a much larger and slower scale than anything we'd seen during wakefulness."
What's more, each wave of fluid was preceded by a large, slow electrical wave.
So now scientists are looking for ways to induce the slow waves that signal deep sleep. Lewis says it's easy — in rodents.
"There's a specific deep brain structure that if you stimulate it, you can cause these sleep-like slow waves in the brain," she says.
In people, there's some evidence that rhythmic sounds can increase slow waves.
It's also possible to boost slow waves by treating certain sleep disorders, says Dr. Yo-El Ju, an associate professor of neurology at Washington University in St. Louis.
Ju was part of a study of people with obstructive sleep apnea, which repeatedly blocks the airway. These patients "seem to have a change in their ability to clear proteins or waste products from their brain," she says. "And people with sleep apnea are at higher risk for dementia down the line."
So Ju's team looked to see what happened after patients had been treated successfully for apnea. The scientists found that treatment resulted in more deep sleep and more beta-amyloid cleared from the brain.
And Ju says there was another effect: Participants' brains began making less beta-amyloid.
"So I don't know whether it's that sleep increases clearance or whether sleep decreases the production of waste products," she says.
Either way, sleep is important to brain health, Ju says – though she admitted to being a bit sleep deprived on the day we spoke.
"My 2-year-old decided to sleep in my bed and eat a tortilla and a banana at 2 in the morning," she says. "But usually I get a pretty good sleep."
I had a great night of sleep.
I awoke at 10 AM.
We went to the bagel shop. One large cup of coffee did not wake me up.
We went shopping at Sams. I walk slow. I don't get out of breath.
I am back on all my supplements.
I had a set back with my Alzheimers when I fell and had a subarachnoid hemorrage on March 7 link SAH
I can still make fasting lunch.
Is everything bagel salt.
Sliced salmon from SAMS.
Capers
Cream cheese. Much better than cream from Ireland.
Although the butter from Ireland is great.
I find if I don't have a satisfying tasting meal like this I get anxious.
On other mornings I will toast my 100 calorie English muffin till it is crunchy, then put crunch peanut better on it, and then roast it till the PB is a little dark.
I then add 3 slices of bacon on it.
Again very satisfying and something I can make myself
I went off my ice cream diet with my fasting glucose going down to 182
I am thinking Glucoset has not gone down to usual 155 is because I eat a fruit bowl every day w whipped cream to get the antioxidants?
Many people hide their diagnosis of cancer because there is often a stigma atttached to it.
The same is true of Alxheimers.
I am writing the fifth year of my experience with Alxheimers to shine a light on what is the progress of the disease.
FIVE CHARACTERISTICS OF GRIT:
from Internet Applied Psychology
1- Courage
2-Conscentiosness: being thorough, careful or vigilant
3- Perseverance
4- Passion
Peter Attia makes a good point about AZ below:
I feel my abiltity to write the above blog shows I have made a major comeback from the SAH.
SAH link
Many Docs are against this type of pill burden.
Pill burden is a concept of the past since our experience with treating HIV successfully.
I stopped supplements on my last trip last month.
Did I notice any problem? HARD TO TELL.
I am felling better back home at with less stress of travel.
Dr Dale Bredesen has a book about the AZ survivors who are on his Recode program.
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)
For me I need to apply my true grit towards more exercise.
We had a great lunch today.
The food was better than the 15 day Ocean Viking Cruise. Surprising. I thought my taste buds were failing but now I realize the large ship can't achieve the same quality as a small restaurant, at least on this trip. Especially as always with resoto.
Again surprising the beef was so much better in this Irish restautant. The taste was amazingly good.
I was so happy to find a great meal again. 58 Euros including good tip.
Last night we went to a Irish restaurant, Flanagan's and I ate an Irish Lamb stew. It had very little flavor.
I am still on my ice cream diet. I am very pleased with the Magnum bars here.
It was partly sunny today in the fifties.
I bought a skull hat for 15 Euro.
I really need it to the wind, which I find very chilling.
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...