From the first moment my wife discovered she had breast cancer in March of 2011, there was a deafening silence from the men I knew. Even ones whose wives, mothers or girlfriends had breast cancer seemed to have received a gag order from some Central Cancer Command and did little more than mumble about the experience. Not one to shut up for any known reason, I started this blog…That was four years ago – as time passed, people searching for answers stumbled across my blog and checked out what I had to say. The following entry first appeared in October of 2016.
“The Devil Wears Prada” is one if my favorite movies. I don’t really know why, but I think part of it is that, in the end, Emily (played by Anne Hathaway) dumps the role she’d assumed and that had been reinforced by everyone around her, and became herself – oh, and she’s a writer!
Be that as it may, a line from the movie has come to mind lately: “Nate: [as Andy takes a call from Miranda] You know, in case you were wondering - the person whose calls you always take? That's the relationship you're in. I hope you two are very happy together.”
Checking my own cell phone, I see that in the last seven days, I have 77 calls from my dad. Granted, I’ve only answered 33 of them, but still…
Right after my mom passed away, I Googled “Alzheimer’s” and found http://www.alz.org/ and their help 24/7 number (1-800-272-3900). I called. They answered. Then they connected me to someone LOCAL.
That was probably most helpful because I was able to talk with someone who was nearby; in the area I grew up in; with a similar worldview.
At any rate, in talking about Dad’s constant phone calls, they advised that I only answer the phone once a day.
“Once a day!” I exclaimed. “I don’t think I can do that to him.”
“You may need to or it will drive you crazy,” said the counselor.
As you can see above, I have failed miserably to follow her advice. According to my data, Dad calls on average 11 times a day. I answer him around three of those times. However, one of those days includes the Sunday me and my brother took Dad out to Fort Snelling National Cemetery. Besides Dad’s sister and brother-in-law, his mother and father are buried there as well (though at different grave sites as my grandmother died ten years after my grandfather did and married again). Mom is there, too. That day, Dad called only twice wondering where I was and when I was going to get there (the place he lives). After that, he was at the cemetery with us and then over at my house for supper. But on average, the number seems right.
The vast majority of those calls are to ask where Mom is. Sometimes he figures it out before I say anything. Sometimes I have to ask leading questions. Sometimes I have to tell him outright. Occasionally he calls worried that Mom left him; that she’s on a trip somewhere and forgot to tell him; or he confuses my sister and my mother asking, “Now, does Pat live in…” To which I reply, “No Dad, that’s where…”
In my defense, I offer up the logic that while Dad usually calls out of boredom and just rings up everyone on the list we gave him of all of us kids and our spouses, he’s only somewhere around Level Four on the Alzheimer’s Scale (I’ll talk about the two scales later), though he’s edging into Five. He’s pretty much cognizant of his surroundings, he can sometimes tell you where he lives, he dresses himself and can use the shower and toilet. He even takes care of Pretty Girl, the cat we gave to Mom after hers disappeared during the move to the residence a year ago. Once those skills start to fade, and according to the literature, he won’t have much farther to go until his body fails entirely.
He DOES get bored there. Sometimes he gets bored believing he hasn’t done anything…when he’s like…gone to an apple orchard.
That perhaps, is the saddest phone call of all.
Resource: http://www.alz.org/we_can_help_24_7_helpline.asp
Image: https://c2.staticflickr.com/6/5527/10893068965_1d328e8f71_b.jpg
From the first moment I discovered my dad had been diagnosed with Alzheimer’s, it seemed like I was alone in this ugly place. Even ones who had loved ones suffering in this way; even though people TALKED about the disease, it felt for me like they did little more than mumble about the experience. Not one to shut up for any known reason, I added a section to this blog…
Every month, I’ll be highlighting Alzheimer’s research that is going on RIGHT NOW! Harvested from different websites, journals and podcasts, I’ll translate them into understandable English and share them with you. Today: A NEW Alzheimer’s Drug…that apparently doesn’t work and costs $85,000 for a one year prescription…has been approved by the FDA?!?!?!?!
So, it’s finally here, you say!
I *sigh* and say, “I’m happy for those families, and while the advertising makes it sound the “Cure Is Here!!!!”, the science is far, far less certain.
This new “wonder drug”… well, let me back up.
The current cause of Alzheimer’s Disease, from the Alzheimer’s Association web site (rather than the drug manufacturer’s website: “Researchers believe there isn't a single cause of Alzheimer's disease. It likely develops from multiple factors, such as genetics, lifestyle and environment. Scientists have identified factors that increase the risk of Alzheimer’s. While some risk factors — age, family history and heredity — can't be changed, emerging evidence suggests there may be other factors we can influence.”
So, to paraphrase, “…there isn’t a single cause of AD…” It’s a disease with various dimensions, MOST likely, which work together to bring about the changes in the brain that cause the symptoms of Alzheimer’s. These factors are age, family history, genetics, head injury, there’s a heart-head connection involving heart disease and the ability of the heart and its accompanying vessels to carry properly oxygenated blood.
The culprit currently are a tandem problem: plaques and tangles.
Plaques form when protein pieces called beta-amyloid clump together. The pieces come from larger proteins found in the fatty membrane surrounding nerve cells that had started to break up. These pieces are chemically "sticky" and gradually build up into clumps – or plaques – between the brain cells. These clumps may block cell-to-cell signaling as well as kick off an immune response that trigger inflammation, which can lead to the body itself devouring disabled cells.
Tangles, on the other hand, come from dead and dying nerve cells. The tangles are made up of twisted strands of another protein that’s broken up. Nutrients and other essential supplies that keep the brain healthy and functioning, can no longer move through the cells, which eventually die.
There have been several drugs prescribed to Alzheimer’s patients, and while there have been small improvements in some people, as a whole, the “silver bullet” has eluded 20th and 21st Century medicine.
The newest drug doesn’t do anything notably different: “Aduhelm, which is based on the surrogate endpoint of reduction of amyloid beta plaque in the brain…”
Translated? No idea. But this is a bit more transparent: “Aduhelm works by removing beta amyloid, delay[ing]…mild cognitive impairment…or mild Alzheimer's dementia. Some people…experienced significant benefits on measures of cognition and function…such as memory, orientation and language, daily living skills…[like] conducting personal finances, performing household chores (such as cleaning, shopping and doing laundry) and independently traveling out of the home.”
Some patients may experience “temporary swelling in areas of the brain that usually resolves over time and does not cause symptoms…others may have symptoms such as headache, confusion, dizziness, vision changes, or nausea…[a] hypersensitivity reaction, including angioedema (rapid swelling of the area beneath the skin or mucosa [like in] the face and throat, as well as the limbs and genitals.” Also, urticaria (you break out in hives).
The most common side effects of Aduhelm were headache, fall danger, diarrhea, and confusion/delirium/altered mental status/disorientation. (Honest observation of my dad? This seems like things he experienced already without taking Aduhelm…)
But other drugs have removed beta-amyloid, and while I’m sure that’s great, removing beta-amyloid is only one small part of the problem. There are OTHER factors that go into Alzheimer’s…
Carlie Porterfield of Forbes Magazine reports that at least two major hospital systems – the Cleveland Clinic, and Mount Sinai in New York, remain unconvinced that the new drug is particularly effective against Alzheimer’s. First of all, “…approved by the FDA in June [Aduhelm] was the first major Alzheimer’s medication to receive the green light from the agency in nearly 20 years.” Can you say, “PRESSURE LOBBYISTS”? Also, there are concerns “over conflicting data from clinical trials about the efficacy of the drug. While a phase 3 study found a 22% reduction in cognitive decline in patients who took Aduhelm, a following clinical trial found no benefit.” And (in a totally stunning surprise) “…the cost of the treatments [would be] $56,000 annually and [a] financial burden…place[d] on Medicare.”
I think the fallout is only beginning: “…some outside advisors [are] quitting in protest of the approval, while Sen. Joe Manchin (D-W.Va.) called for FDA Acting Commissioner Janet Woodcock to be refused a permanent role as the head of the agency.”
Worst of all, families who thought that help was on the way – and we were one of those families a few years ago – have once again had their hopes dashed by…well…I’ll keep my opinion on that to myself, though you can probably figure out what I think about drug companies and profiteering just by reading this essay…
Resources: https://www.kare11.com/article/news/nation-world/fda-approves-first-new-alzheimers-drug-in-nearly-two-decades-biogen-aducanumab/507-85338078-26c9-4d3b-ba4e-89ba4e64c25e
References: https://www.alz.org/alzheimers-dementia/what-is-alzheimers/brain_tour_part_2, https://www.alz.org/media/documents/fda-approved-treatments-alzheimers-ts.pdf, https://www.forbes.com/sites/carlieporterfield/2021/07/15/heres-why-2-major-health-centers-wont-carry-controversial-new-alzheimers-drug/?sh=64b2cbb9445d
Image: https://encrypted-tbn0.gstatic.com/images?q=tbn:ANd9GcSYobM5GeFry6lVayNtb8o5ks8AftNG0URFgu_oXUYoYAK2ON3Kix5-x8KikJh6cUqX6s07sMTjm_qfOA&usqp=CAU
From the first moment my wife discovered she had breast cancer in March of 2011, there was a deafening silence from the men I knew. Even ones whose wives, mothers or girlfriends had breast cancer seemed to have received a gag order from some Central Cancer Command and did little more than mumble about the experience. Not one to shut up for any known reason, I started this blog…That was four years ago – as time passed, people searching for answers stumbled across my blog and checked out what I had to say. The following entry first appeared in January of 2017 – next time I do BC Research RIGHT NOW, I’ll update this! http://breast-cancer-research.biomedcentral.com/articles/10.1186/s13058-016-0712-6
The very first sentence was startling to me!
“Cancer is now viewed as a stem cell disease. There is still no consensus on the metabolic characteristics of cancer stem cells, with several studies indicating that they are mainly glycolytic and others pointing instead to mitochondrial metabolism as their principal source of energy. Cancer stem cells also seem to adapt their metabolism to microenvironmental changes by conveniently shifting energy production from one pathway to another, or by acquiring intermediate metabolic phenotypes. Determining the role of cancer stem cell metabolism in carcinogenesis has become a major focus in cancer research, and substantial efforts are conducted towards discovering clinical targets.”
WTH is a “stem cell disease”?
Googling it was pointless because all it turned up was USES of stem cells to cure this, that, and the other thing. Not that they CAN do that yet, but the potential is there and scientists are working tirelessly to find out exactly how to use them to cure diseases like diabetes, spinal cord injury, Parkinson’s, Alzheimer’s, heart disease, Lou Gehrig’s, lung, arthritis, sickle cell, and organ failure.
Deeper digging brought me to this: “Most cancers are now viewed to be driven by a population of cells with stem cell characteristics…The subversion of molecular ‘stemness’ is now seen as a critical milestone, leading to oncogenesis.” Molecular Pathology of Hematolymphoid Diseases edited by Cherie H. Dunphy [https://books.google.com/books?id=t5Wt0BeldmAC&pg=PA8&lpg=PA8&dq=define:+cancer+is+now+viewed+as+a+stem+cell+disease&source=bl&ots=J5OZNr62od&sig=n4OhxvyDatzcC8ULJGIZed13Kh0&hl=en&sa=X&ved=0ahUKEwjQoMun_MLRAhVS72MKHSalBoMQ6AEIQzAG#v=onepage&q=define%3A%20cancer%20is%20now%20viewed%20as%20a%20stem%20cell%20disease&f=false]
So what does that all mean?
The hoopla for years is due to the fact that “stem cells” are like…cells waiting to be told what to do. Usually, in the Human body, the cells are like this only for a short time. That’s why there was a horrendous fight over scientists insisting that the only place they could possibly get stem cells from is from Human embryos. Everyone was girding for a fight for their research funding…when all of a sudden, other scientists discovered that there were some of these “cells waiting to be told what to do” in every one of us! “Adult stem cells have been identified in many organs and tissues, including brain, bone marrow, peripheral blood, blood vessels, skeletal muscle, skin, teeth, heart, gut, liver, ovarian epithelium, and testis. They are thought to reside in a specific area of each tissue (called a "stem cell niche").” (https://stemcells.nih.gov/info/basics/4.htm).
Pretty much end-of-fight with egg on the faces of name-callers all around.
So – apparently, there are Cancer Stem Cells (CSCs) now. From the article I started with: “There is still no consensus on the metabolic characteristics of cancer stem cells, with several studies indicating that they are mainly glycolytic and others pointing instead to mitochondrial metabolism as their principal source of energy. Cancer stem cells also seem to adapt their metabolism to microenvironmental changes by conveniently shifting energy production from one pathway to another, or by acquiring intermediate metabolic phenotypes. Determining the role of cancer stem cell metabolism in carcinogenesis has become a major focus in cancer research, and substantial efforts are conducted towards discovering clinical targets.”
WTH does THAT mean?
Essentially this – that there are stem cells waiting to change into active cancer cells. They need certain things, which nobody is certain of yet. It APPEARS that there are a couple of things they agree on.
First is that a cancer virus (?) can grab hold of the stem cell’s ability to change into whatever is needed – and turn it into a cancer cell. Second the suckers can ADAPT like crazy to whatever the body is doing around them. Acidity? No problem! Cold? No problem! Fever? No problem! The cancer cells welcome the challenge so that they might laugh at the Human body and begin to grow uncontrollably. The way they adapt is to shift their “power source”. Sort of like “Flex-Fuel” cars. Whatever energy they can get hold of, they use.
Sneaky SOBs, eh?
The future may hold new drugs that block the cancer cells from being able to switch power sources. As well, there are also non-stem cancer cells, so chemo may still be a normal cancer procedure. This research has primarily been looking at how to prevent cancer cells from metastasizing – but from that research…who knows what may grow?
Image: https://c2.staticflickr.com/6/5527/10893068965_1d328e8f71_b.jpg
The older I get, the more suffering and pain I’ve experienced; and the more of both I stand witness to. From my wife’s (and many, many of our friends and coworkers) battle against breast cancer; to my dad’s (and the parents of many of our friends and coworkers) process as he fades away as this complex disease breaks the connections between more and more memories, I have become not only frustrated with suffering, pain, and having to watch both, I have been witness to the suffering and pain among the students I serve as a school counselor. I have become angry and sometimes paralyzed. This is my attempt to lift myself from the occasional stifling grief that darkens my days…
Two days ago, a dear friend of ours lost her mother to Alzheimer’s.
Sad to say, she is one of a growing number of deaths that can be clearly related to Alzheimer’s. The question that’s always puzzled me is what EXACTLY does a person with Alzheimer’s die FROM? I get it when they get COVID19 or pneumonia, or cancer, or another disease – while it’s not directly related to AD, the disease is a factor.
Dad fell because he was disoriented – he’d been taking a set of dresser drawers apart with the intent of fixing them. Most likely he was exhausted from his efforts (the mess he made emptying it, tipping it over on its side and pulling it toward the toilet so he had somewhere to sit while he worked on it); the bed linens win complete disarray (the weekly staff practice of stripping the beds except for the spread); and the huge raspberry scrape and bump on his head which had never been reported to us! (led my sister who had visited him that day, to surmise the worst – that he’d been robbed or beat up or something else horrifying) no one on staff was able to explain the state of the room. We had to assume the worst and lodged a complaint with the facility…and found out the details (in parenthesis above) after some sleuthing…
Dad fell again not long after, which required a visit to the hospital and the acceleration of his deterioration. He never recovered from that incident and died several weeks later.
But what HAPPENS to an AD patient’s body? Does the immune system stop protecting them? Is there heart damage? What?
We DO know that Alzheimer’s and risk of heart failure occur together (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4409079/) (though the relationship between them is unclear); as well as high cholesterol. As well, besides the obvious alteration of mobility and memory loss, Alzheimer’s can also affect muscles, making them less flexible and more rigid (https://www.entrustdesoto.com/blog/how-does-alzheimers-effect-the-body-physically/) as well as creating difficulties in maintaining weight because AD affects the ability of a patient to both chew and swallow.
Recent research has also shown that AD affects the actual bacteria in the intestines: “New researches indicate that gastrointestinal tract microbiota are directly linked to dementia pathogenesis through triggering metabolic diseases and low-grade inflammation progress.” So, AD patients not only have trouble physically chewing their food, they also have trouble digesting it – which most likely leads to a decreasing desire to eat, which leads to weight loss…
OTOH, Dad was eating just fine a month before he died:So, deterioration can happen very quickly. An aging immune system can in fact, have a profound impact on AD: “The aging of the immune system involves a series of changes which decrease the ability to fight off infections and increase chronic low-grade inflammation. These changes can promote chronic age-related diseases, including Alzheimer’s disease. The immune system can affect cognition, and the majority of genes shown to influence Alzheimer’s disease risk impact the function of the immune system. This suggests that aging-related changes to the immune system may impact the risk and rate of cognitive decline, and that maintaining a healthy immune system could help stave off dementia.” (https://www.alzdiscovery.org/cognitive-vitality/blog/is-there-a-link-between-the-immune-system-and-cognitive-health)
So, this is the opposite – AD isn’t caused by an again immune system (at least not that we know of yet…) but that system failure can exacerbate AD…
All of this to say, our sympathies lie with you, DC; you and your family at the loss of your dear Mom…It’s NOT encouragement in the usual way today; rather I want to acknowledge the loss and offer my heartfelt prayers in this time of BOTH grief, and resignation at the end to suffering.
Resources: (embedded above)
Image: http://www.quoteambition.com/wp-content/uploads/2017/04/encourage-quotes-destiny.jpg
