Wednesday, July 31, 2019

The final blogpost

After my diagnosis of early-onset Alzheimer’s, I knew I had to write about my condition. But how? I soon learned that Greg O’Brien, who lives on the Cape, had written a stellar book about early-onset Alzheimer’s. I’ve met Greg only one time, and the encounter was brief. But his book is essential to me. Greg proved that someone with Alzheimer’s can write at a high level.
Why am I ending my blog? Alzheimer’s is a “progressive” disease. There is no going back to an earlier stage. More important, doing my blog has come to be an arduous task. Or worse.
Yes, I can depend on Paula’s skills. But Paula has other work to do. And I am chary to dump another task on her. And some of you may recall the near loss of my electronic manuscript, after I tipped a glass of water on my laptop, putting me in a funk. Paula was magnificent that day. That’s one reason I married her: supreme calm under stress.
And now that I won’t be publishing my blogposts, how will I fill my time? This should be fairly easy. For decades, I carped about not having time to work on my fiction. Now I will have a chance. Certainly, I will have the time. But fiction is a more demanding genre. My last book was a collection of essays, focused on commercial fishing in Puget Sound and Southeastern Alaska.
There was a time that my fiction writing was the center of my universe. Here is an example. In 1989, I was preparing for my “comps”—short for comprehensive master’s exam—at Northeastern University. While other students had diligent plans to ensure they pass, I flippantly roared through the test. Why the rush? Elementary, dear Watson. I hoped to get back to Somerville, so I could write a page or two of my novel when I got home.
This time around, things are different. I recall a Northeastern classmate suggesting that I was faintly obsessed with my book, and he was probably right. O, creative youth, make your imprint before life hardens into obsidian.

Thursday, July 25, 2019

Middle stage

What does the middle stage of Alzheimer’s feel like? Let me be your guide. This past week was a hard one. It started with high hopes. For the fourth time, I was looking forward to participating in the End to Ride Alzheimer’s. By now my friend and riding partner, Matthew Abbate, were embarking for the fourth year in a row. I had reason to expect that things would similar. Each year was different.
Our first year, I was asked to make a short speech on the eve of the Ride. I spoke about my early love for cycling, and cycling through a dangerous May storm in 1979 in the Cascades. But this year, my fourth Ride, was a first. What happened? I am still figuring it out. It appears that there was an important gap in certain spaces, like in the Nixon tapes. The same process was going on in my brain. The ocean was on my left. As long as I still could see the shore, things were normal. What I was looking for was the entrance to the woods. In other years, I felt tranquil. But this day, I was agitated.
In other years, I looked forward to the food stations. We were probably within fifteen minutes of the first food station. But we were too slow. I had to pull over into a parking lot, feeling dizzy.
What else has changed?  This is a big one. Month to month, I have to be careful when I walk around Somerville. This first came to the fore in a big way in spring 2017. At that point, I was still firmly in the early stage of the disease. Overnight, I realized that I must be much more careful in public alone. Back when the Red Sox won the World Series in 2013, I was confident to go to the celebration parade alone. But in the very recent World Series (2018), I concluded that I would be a fool to plunge into the crowds. Another distinction is the decline in small-motor skills. The first time, in 2016, I had no problem pinning my ID. But in recent years, I had to ask for help.

Recently, I was one of four panelists high up in one of Boston’s highest buildings. With scudding clouds passing by, the topic was dementia. Each panelist had some form of dementia. A decade ago, dementia was not much discussed. I’m sure that talking and learning is at an all-time high. To me, this was quite novel. I have been on several panels. But having four panelists with dementia was a wonder and a joy.
And what about the “fog”? That was the topic of a recent book, from a novice writer. For me, fog is not a major concern, at least for now. What did strike me was a visit to my Mom’s care facility north of Seattle in 2013. At that time, I was already showing signs of cognitive decline and worse. Then I saw a man, quite demented.
 He seemed out of Greek mythology. He was half-naked. I could infer that he was quite demented. Later, I could infer that the man was at the final destination. Thus did my first lesson in dementia studies conclude. I pitied him. He must have been very dizzy. But at the time, he also disturbed me.
And these days, I have to be careful when I walk alone. That is my biggest vulnerability these days. So, I make a point to walk only on familiar routes.

Tuesday, July 16, 2019

Winding Down

 When I got my diagnosis in June 2015, the only thing I knew about Alzheimer’s was that there was no cure. But I was eager to learn. Vaguely, I began to learn about the disease. One painful error was the relationship between Alzheimer’s and CTE (chronic traumatic encephalopathy).
There were distinct pathologies. At that time, I was in touch with Steve DeWitt, a former high school football player. Both Steve and I played high school football in Bellingham, Washington. For a year or so we both thought we had head trauma caused by football. But we were playing in the wrong arena. Somehow, we both conflated Alzheimer’s with CTE, a much more fearsome adversity. So, stumbling as we walked, we began to understand the real opponent: Early-onset Alzheimer’s. Then something sad occurred. Steve began to slow down. This process, of course, was irreversible.
And now, I am slowing down. And Steve is having a very hard time.  My goal is to get my book about Alzheimer’s in print sometime in 2020. But this is not a race.  And without my wife, Paula, there would no book at all. Her copy-editing and proofreading: those skills used be mine as well.
What can I do to help? Channeling the Hippocratic oath, do no harm. In the early years of the blog, I didn’t need a lot of help, other than Paula’s proofreading. But during the last two months, things seem to be cratering. The Evich men—my late father, my brother, and I—have dealt with anxiety.
Now, I am confronting the “fog.” This is fairly common with Alzheimer’s. Recently I reviewed a book largely on this phenomenon. Several years ago, I was visiting my mom at her assisted-care facility. It was the first time that I saw someone with obvious dementia.
He seemed to float in the room, like something from Greek myth. Did he stuff cotton in his ears? His journey was almost done. But we mortals must cherish our time. Turn off your phones, and tend to your souls.

Friday, June 7, 2019


Alfred Johnson is not a professional writer. But this former Oregon State Trooper knows how to tell a tale in his book Unmerciful Fog: My Journey with Alzheimer's Disease Dementia. And both of us were commercial fishermen in the Northwest. In 1975, my dad granted me a full share of the salmon catch, in the waters of north Puget Sound. And in the late 1980s, I made good money fishing in Southeast Alaska. For Johnson, it was the coast of Oregon.
There are two subjects that are precious to Johnson. The first is hunting. But since his diagnosis, Johnson has turned a new leaf. Now he enjoys nurturing kittens. Dementia can do strange things to the human brain. I happen to be a churchgoer. But to Johnson, religion is central to his identity. This is when Johnson’s narrative comes fully alive in a big way. And sometimes people with dementia are not reliable narrators. Just weeks after my diagnosis, I was summoned to jury duty. At that time, my mind was still nimble. Those days are long gone. I asked my wife, Paula, if I could serve on the jury, if chosen. Paula quickly shot down the idea. No one with any form of dementia can serve on a jury. The reason, of course, is that jury people have to have to be competent.
The background of this section appears during a hunting
outing. It appeared that Johnson is hunting alone. Or is he? He can hear the highway, parallel to him. Chapter II is quite impressive. The chapter header is The Train Has Left the Station. This is when Johnson’s talents come to the fore.
Johnson had been a big-game hunter for more than three decades. But his tastes have changed. The larger transformation was a deeply religious one. My favorite scene in the book involves Johnson getting lost in the woods. Long before I was diagnosed, I had a very poor short-term memory, and now the idea of being in the woods alone terrifies me. The venue was eastern Oregon, with his friend, Dusty. “During the trip ... the thick dark layer of clouds had descended and obscured the peaks of the mountainous landscape. I scanned the forest for wildlife while admiring the beautiful forest.”
But things did not remain bucolic. According to Johnson, after stalking a deer, he realized he was lost. “After wandering aimlessly through the forest a while, I arrive at a hilltop that provided a good landmark vantage point,” but he then realizes he “had walked in a circle.” He then feels a sensation many people living with dementia will recognize, “My anxiety level rises as darkness begins to engulf me, and I continue the desperate hike toward the sound of the elusive highway. I finally realize that the sound is not highway noise, but rather, the wind blowing through the trees.” Johnson stops and prays at that moment, and gains “a sense of inner strength” that helps him to keep walking on. With renewed hope, he “ponder[s] which direction will most likely lead me to the highway,” and just then he hears an old truck approaching.
Johnson is alluding to Christian doctrine. “When I arrive at the passenger door, the man in pleasant tone, states, ‘My son, walk down the road, the highway is 3 miles, you can’t miss it.’” Johnson interprets the man’s arrival as a sign that “Jesus Christ had answered my prayers to encounter an angel.”
I do have one criticism: Subtle readers should be able to figure out things on their own. But I salute my fellow writer. It is quite an act for a novice writer. And, my sense is that Johnson wants readers, as almost all writers do. But Johnson, I suspect, doesn’t aim for a large audience. His audience is God.

Monday, June 3, 2019

Too many genes, Revised Version

I posted the rough draft of “Too Many Genes” on May 10. Here is the revised post, about Randy and Mary and their family’s experience with Alzheimer’s.

After I was diagnosed with early-onset Alzheimer’s disease in 2015, I was puzzled.  The year before I had been doing research for a writing project about my forebears in the Northwest. Here is what I learned. With the exception of my grandfather, who died in a logging accident in 1940, there was no smoking gun among my grandparents. I hadn’t learned yet that Alzheimer’s can be caused by environmental causes. My dad was a commercial fisherman. One theory of mine is that as a small boy, I often accompanied my dad to his web shed, where toxic fluids were kept in the harbor. That was my theory. But that was irrelevant.
But Randy Garten and Mary Bessmer don’t need evidence at all. Randy’s family tree is riddled with cases of Alzheimer’s, going back to the era when people rarely called it “Alzheimer’s.” His mother and his  maternal grandfather and great-grandfather all had the disease. Randy’s father also said there was some Alzheimer’s on his side of the family, but did not go into specifics. One euphemism used back then was “hardening of the arteries,” as if it was a concern of the heart and lungs. There was a stigma against people with dementia.
Mary said, “I saw stigma within Randy’s family as much as outside. Randy’s Dad seemed ashamed as well as depressed and frustrated by the disease. He was a precise, organized engineer who valued hard work. He saw the glass as half-empty rather than half-full. He would quiz his wife (who had dementia) about what she had for dinner the night before and felt badly that she didn’t remember. He found her repetitive actions without accomplishing anything useful to be a terrible thing.”
At the same time, Mary said,Randy’s Dad did see caring for his wife as his special responsibility and mission. Although he struggled with depression, he managed to care for her at home until the last six weeks of her life. After her death, Dad began to notice some of Randy’s memory lapses and began to fret about Randy having the full-blown disease too, although at that time Randy’s diagnosis was mild cognitive impairment.”
Two years later, during the final year of his life (2016), Randy’s Dad said to Mary privately, “I won’t be able to stand it if Randy has Alzheimer’s like [my wife] did.”  Mary said, “He mourned this possibility and seemed to feel guilty about perhaps giving it to Randy through his own family genetics. Because of Dad’s depression and suicidal ideation, we never informed him about Randy’s Alzheimer’s diagnosis at age 63.”
Sadly, Randy’s dad was clairvoyant, despite his Alzheimer’s. Randy did have Alzheimer’s: Randy himself was diagnosed in 2016, and left his longtime position in the state Health and Human Service Department, working under Alice Bonner in the state administration of Charlie Baker.
But what about the stigma? Over the last two decades, there have been leaps and bounds in understanding this disease. But when a young adult learns that he or she is likely to end up with Alzheimer’s in middle age: That could stress the parent-child relation in a very big way.
Of course, it’s possible that Alzheimer’s will find a cure and the generation of Randy and Mary’s kids could benefit in a huge way. Are you skeptical? Over the last 18 months, there was serious hype about ending Alzheimer’s. And if you are one of those adults whose families has the APOE4 gene: Don’t become fatalistic. Money speaks. And one of these years, there will be a sea-change.

Friday, May 10, 2019

Too many genes

After I was diagnosed with early-onset Alzheimer’s disease in 2015, I was puzzled.  The year before I had been doing research for a writing project about my forebears in the Northwest. Here is what I learned. With the exception of my grandfather, who died in a logging accident in 1940, there was no smoking gun among my grandparents. I hadn’t learned yet that Alzheimer’s can be caused by environmental causes. My dad was a commercial fisherman. One theory of mine is that as a small boy, I often accompanied my dad to his web shed, where toxic fluids were kept in the harbor. That was my theory.  But that was irrelevant.
But Randy Garten and Mary Bessmer don’t need evidence at all. The couple’s tree is riddled with cases of Alzheimer’s, going back to the era when people rarely called it “Alzheimer’s.” One euphuism was “hardening of the arteries,” as it was  a concern of the heart and lungs. As Mary put it: “I couldn’t stand Randy’s dad in his final months. And he said, “Randy will have it too.” Sadly, Randy’s dad was clairvoyant, despite his Alzheimer’s. Randy did had Alzheimer’s: Randy himself was diagnosed in 2016: Randy left his job from his longtime position in the state Health and Human Service Department, working under Alice Bonner in the state administration of Charlie Baker.
For families like Randy’s and Mary’s, it can be difficult to unravel to understand the relationships. After all, genealogy can span beyond a century or more. Who was “Big Al?” Did his name suit him?  And what about Maurice? Might
that name still in currency? But what about the stigma? Over the last two decades, there have been leaps and bounds in understanding this disease. But when a young adult learns that he or she is likely to end up with Alzheimer’s in middle age: That could stress the parent-child relation in a very big way.
Of course, it’s possible that Alzhiemer’s will find a cure will find in the generation of Randy’s and Mary’s kids benefit in a huge way. Are you skeptical? Over  the last 18 months, there was serious hype about ending Alzheimer’s. And if you are of those one those adults whose families has the APOE4 gene. Don’t become fatalistic. Money speaks. And one of these years, there will be a sea-change.
The Mediterrean Diet is not some fad.  The evidence is in.  And it does have its drawbacks. Many people can’t  the taste can’t abide, even when herbs like rosemary or thyme. And, if you are fairly heathy, walking is a simple way to improve one’s mood.  Just remember, if you are walking on your own, you better be familiar with the route. Cellphones can literally save lives, but if you don’t charge your phone battery,  you can end up like I did: Having my college-age son bail me out. The result would have been impoundment in the nation’s capital. How priceless would have  that have been?

Friday, April 19, 2019

Comfort zone

As I go around my days, I am usually careful when I sense that I might be moving into unfamiliar places. In Somerville, where I have lived for decades, it would be difficult for me to get lost. Not long after my diagnosis, I started doing a very simple 30-minute walk. I start from my home and walk in a rectangle until I am back on my street.
There are other walks, embedded in my long-term memory. One is more challenging. There is a sky bridge, over Route 28, which connects east Somerville with the rest of the city. I hadn’t done it recently. It takes me into Boston. But the path ends at that point. Another route takes me past Tufts University, where Paula studied in the graduate English program. I don’t have to think about where I am. 
It’s a good 70-minute walk, overall, comparable to the route of The Walk to End Alzheimer’s fundraiser. Foolishly, last September, I did the Walk, despite having a deformed sole on my right shoe. It was months before I could walk normally without pain. Another route of mine follows Massachusetts Avenue, which is my umbilical cord. Sometimes I need to relieve myself. And let’s just say that my prostate gland is not what it used to be. In 2o16, at the end of a vacation in Puget Sound, my cousin’s husband had cooked up a vat of steel-cut oats. I love steel-cut oats. They are very nourishing, and I aim to cook them once a week. But I have to be careful. Like my dad, I struggle with my prostate gland. I know from experience that it can be serious. But that morning, I didn’t take into account the Seattle-area traffic. If I was on a bus, the bus would have had a toilet. But I was riding in a van. One woman on the van offered me an empty plastic bottle to collect my urine.
There probably would have been a toilet along the route. But the van lacked that service. We were on Interstate 5, heading toward the airport. Remember those O.J. Simpson commercials running through airports? That’s what I was doing in that early-morning dash to find the first restroom. My goal: don’t wet myself. Goal fulfilled.
What about cooking? Over the last week I was alone in our house for a few days, while Paula and our daughter were away. I had dinner with friends every evening, and the first few days, I made canned sockeye salmon sandwiches for lunch. Canned salmon can be fairly costly. The dressing I make is from scratch: olive oil and a smaller volume of balsamic vinegar. And there was an incident, but nothing came out of it. I was eating my five-minute oatmeal at the time. I received a landline phone call. It turned out to be from Paula. In any case, this incident was barely worth reporting. The electric burner was cherry-hot, but that was no great concern. I removed the pan from the burner and shut it off.
 What about going though security at airports or government buildings? I still yearn for my tan leather jacket, which I lost in 2o15, not long before my diagnosis, and I suggest my jacket is now the property of some airport employee. And in downtown Boston, a couple of years ago, I encountered a guard who seemed to want absolute proof that I had dementia. Who can say? Unless the person is acting in a strange manner. Only in the late nursing-stage do people with Alzheimer’s display typical symptoms: vacant stares, dizziness. And there are two activities that can be enjoyed to the terminal stage: Art and music.

Friday, April 12, 2019

$290 billion

 This was not the first time that Paula and I had traveled to Washington to advocate in the nation’s capital on behalf on Alzheimer’s and other forms of dementia. But this time more was as stake. In 2016, most people assumed that Hilary Clinton would be our next president. More important, in terms of health care, Clinton would have continued “Obamacare,” or something very similar. Instead, we got a president who has seemed at times to barely know his own mind. For Paula and me, the stakes couldn’t be higher. And that’s why when Paula spotted Senator Susan Collins, Paula immediately engaged in a discussion about health care. Keep in mind  that Collins is an endangered species: A moderate Republican. That wasn’t the case a generation ago. But over the decades, polarization has taken its toll.
And the real topic in Washington recently was the number of people who advocated on behalf of Alzhiemer’s disease. Under the banner of purple, Republicans and Democrats, engaged with lobbying. Elizabeth Warren made an appearance, but made no political message. At one point, Warren reached out to us with a handshake and a hug.
And if you want to know about everything about Alzheimer’s and other similar diseases, this is where you go: The 2019 Alzheimer’s Disease and Facts and Figures. If you want to get a copy, I suggest you that you reach out to your local Alzheimer’s chapter to
Here is a huge fact: Hours of unpaid Care and Economic value: more than more than $18.5 billion. Why women? The pat answer is, women have always done the dirty work. And I do mean dirty. When my dad was dying at age 86, from congestive heart failure, it struck me that his death was a rather clean death, compared to what I should expect for my own demise. But dying without my marbles is deeply discouraging. But that’s what Alzheimer’s has dealt. And that is no surprise. I am fortunate to be where I am. Sure, I will probably die a dreary death. But, I have been told that Alzheimer’s is a relative painless way to die. And that is probably true. But certainly, it won’t be a noble death, like dying in the battle of Austerlitz. No, we have to move into farce to fully appreciate this disease. Do you see Woody Allen being shot out of a cannon? How clever! The man who fears everything. That’s what living with Alzheimer’s is like. Absolut farce.

Tuesday, March 12, 2019

Homage to Pat Summitt

As many sports fans know, Pat Summitt was an amazing basketball coach. Scanning Wikipedia falls short to explain how successful Summit really was. Yes, she won a silver medal in the Montreal Olympics, as a player, in 1976, but her destiny was to become one of the greatest basketball coaches of all time. Over the decades, the championships kept piling up. You would have to go back to the era of John Wooden at UCLA when to find an apt comparison. From the early 1970s, to find a coach who was so fabulously successful.  Better to recall the good days, when her players—most of them—adored  her. Why wouldn’t they. Sure, there must have been rivalries among the players, but that is typical.
But here are some  examples, from Coach Sumitt. Candace Parker was the star of that team, from 2004 to 2008. Parker also was the first women  to dunk in an NCAA tournament.
Summitt had several sayings.
Attitude is a choice. What you can think you can do, whether positive or negative, confident, or scared, will most likely happen. In a more aggressive stance, Summitt would say, Here’s how I’m going to beat you. That it. And finally, It’s harder to stay to on the top than it is to make the climb. Continue to seek new goals.
And keep in mind that Summitt was living with the disease, without knowing it. And it seemed that her case had moved fairly swiftly. What a shame. She was diagnosed in 2011 at age 59. What  a terrible loss . Others have gone on to live in with many years in relative good mental health.  Pat Summitt was robbed.  But she would not have put it that way. After all, the team is called the “Lady Volunteers.”

Also in the spring edition is a feature about myths about Alzheimer’s. Progress continues, but there are still pockets where some people are in denial. Accordingly, ALZ has published a “myth or fact” feature.
The most misleading of the “facts” is that Alzheimer’s is just another part of aging. Even doctors, in the early years of the 21st Century, most doctors thought that senility was a normal process of aging. And even more hoary was the claim that one could not die from Alzheimer’s. The next “myth” is close to my heart. “Only old people get Alzheimer’s.” Well, I have been writing a book about early-onset  Alzheimer’s over the past several years.
At least the myth about aluminum can sounds plausible. But there is no evidence whatsoever that flu shots can contribute to dementia. The last “myth” noted is more subtle: “It would be wonderful if a particular food or supplement could delay or prevent Alzheimer’s disease, but we do not have the science evidence that these claims are true. “We need clinical trials to evaluate whether any food or supplement will have…It is unlikely that one food or supplement will have a significant supplement. The Alzheimer’s Association encourages everyone to eat a healthy diet and balanced.”
Also in this issue, Candace Parker, one of the great women’s college basketball teams, leading to the Ladies Vols to two championships. Then came the devastating news: Summit was diagnosed with early-onset Alzheimer’s. There are about 200,000 cases in the United States. But back to back are two features. The first one is “Ask us.” The writer asked this: My 78-year sister hasn’t been herself. Her house has always really neat and tidy last time I visited it was a mess! It didn’t look at all at the place she for more than 50 years….I’m worried something more is going on.”
And here is the reply: “As someone who knows, you are right to be concerned. When there are distinct changes in a person’s behavior…With that said, it can be difficult to approach someone with your concerns and recommendation. Sometimes people may not see changes in themselves. If you are holding this magazine in your hands, you can just look at the next at page. The title is “10 steps to memory concerns:

1.    What’s the person doing or not doing ordinary?
2.   What other health or lifestyle could be a factor
3.   Has anyone noticed the change (or changes)?
4.   Who should have the conversation? Important!
5.   What’s best time and place?

Friday, February 22, 2019

When you're no longer working

The ideal reader of my forthcoming book about early-onset Alzheimer’s disease would have just recently been diagnosed with early-onset Alzheimer’s disease or some similar form of dementia. Perhaps the individual is in shock, or in denial. The statistics say that that roughly two-thirds of the victims are women. But that can be misleading in the early-onset realm. In my experience, men and women are usually rather balanced. Many of us were at our peak salaries, and derived part of our identity from our job or from the idea we were supporting ourselves and our families.
After I left my job, I discovered that the Alzheimer’s Association organized many stimulating activities. The rationale is that Alzheimer’s is typically a slow-moving disease, and in some cases, people can hang on for as long as twenty years. Of course, this is a progressive disease, but research has shown that people can appreciate art and music even in the terminal stage.
Sometimes I describe the Alzheimer’s Association as a social club, on account of all of the outings and plays, with no cost to us. The first play Paula and I attended was a musical, based on a sliver of War and Peace. Tolstoy might be rolling in his grave, but it was great entertainment. More recently, we attended an excellent production of Othello at the A.R.T. in Cambridge. As a college-writing instructor at Northeastern University in the nineties, I became well-acquainted with Shakespeare’s greatest tragedies including Othello, the Moor. At the time, the O.J. Simpson trial was fresh in our minds, and it was stimulating to note the comparisons.
The A.R.T. production was fresh. Rather than grounding the play in the Elizabethan world, the production was set somewhat in the present time. One scene was set in a gym where Othello and Iago worked out, with numerous screens in the background showing global hotspots, in the CNN style.
But this is all prologue. My objective is to explain how I can help people who are very new to the concept of dementia. First, I would say, “How long have you been feeling this way? Are you scared? Can you remember when you first noticed that you didn’t feel like yourself?” These are challenging questions. You might want to get a notepad and a comfortable chair, and write about your reactions. Does Alzheimer’s run in your family? Even if it does, don’t panic. My understanding is that having a parent with Alzheimer’s is just one risk factor. You might have a higher risk than the general population. I have seen figures suggesting that even if you do have the APOE4 gene, your risk goes up by only roughly 40 percent. And it took some time to allay my brother’s fears that he was at risk. Fortunately, I was able to draw on Alzheimer’s Association figures and facts, and that was the end of the conversation.
But there are other aspects in which you can drive your destiny, at least partially. Here are a couple of examples. The first is close to my heart, literally; it is regular exercise. I stopped jogging sometime in my forties, partly because I sensed that I wasn’t doing my lower joints any favors. But now I swim or walk half an hour to an hour a day.
Another way to keep yourself sharp is to stay socially engaged. After you leave your job, there are many ways that people with dementia can remain engaged, from support groups to going to a place of worship to volunteering at a senior center to meeting with friends on a regular basis. Across the country, the Alzheimer’s Association has events to keep people living with the disease busy and engaged. Even if you’re depressed and don’t feel up to going out, you’ll find that being with other people who know about and accept your diagnosis will raise your mood by helping you to stay engaged.
Third is pursuing a healthy diet. It’s up to the people living with the disease to make the decisions. If you like olive oil, get in the habit of making your salad dressing. It’s quite simple. The cornerstone of the Mediterranean Diet is olive oil. And I love dipping crusty bread in the oil. If you are in a hurry, you can use the Paul Newman brand, but I tend to find it too acidic. I haven’t measured this yet, but I prefer my own concoction, which is roughly two parts olive oil, and one part balsam vinegar, with a moderate amount of pepper.
But this is not all about lifestyles. There are a plethora of choices. The guiding concept is to live in the moment, and avoid self-pity. And look for moments that others miss.

Friday, January 25, 2019

Depression's role

After I was diagnosed with Alzheimer’s disease in 2015, I was given Aricept, one of the two main drugs for people still in the early or middle stage. But without anyone asking me, I was prescribed an antidepressant. But the doctor seemed to suggest that anyone with Alzheimer’s would be depressed. In my case, I felt much better after I left my job. In fact, within a week, I felt much than I had for the past two years. For me, leaving my job quickly was a godsend.
 My vocation as a writer allows me to work at home. And that is one reason why I don’t often get the blues. But the fact sheet is quite dated: 2003. That was the same year that Joanne Koenig Coste published Learning to Speak Alzheimer’s, a book that has had a huge impact in this century. Here are some of the more relevant points. At that time, in  2o percent to 40 percent with Alzheimer’s become depressed. “Identifying depression  in Alzheimer’s can be difficult. There is no single test or questionnaire that can lead to a diagnosis.” The fact sheet notes that apathy itself can be a symptom of depression.
“The first step in a diagnosis is a thorough evaluation. Side effects of medication or an unrecognized medical condition…of the evaluation will include the person’s mental and physical state.” Key elements include apathy, which can lead to a vicious circle. Patients may be trying, but without a lot of support—from one’s spouse or another significant person—the patient may lose faith that things can better. The fact sheet notes, “Dementia itself can lead to certain symptoms commonly associated with apathy. “Cognitive impairment may be experienced.”
According to the fact sheet, this is what many of my cohorts and I should expect—a slow, long trek where the victims’ families will bury their dead. According to a group of investigators with much experience in studying dementia, the *National Institute of Mental Health proposed the diagnostic. Here are some of the listings from the fact sheet: “Significantly depressed mood—sad, hopeless, tearful; decreased positive feelings; social isolation; disruption in appetite that is not related to another medical condition; disruption in sleep; agitation or slowed or; disruption that is not related to a medical condition.

*This is not the current name of this building.

Friday, January 18, 2019

A sturdy template

Pam MacLeod, who works in the Massachusetts Executive Office of Elder Affairs, describes herself as a program development professional. Since early in her career, she has helped foreign, state and municipal governments develop new policies and programs and now she works to address the burgeoning number of seniors, a good many of them with Alzheimer’s or some other form of dementia.
She joined Elder Affairs in June of 2014 and became involved in the Dementia Friendly movement in 2015.
“We heard about and learned about the Dementia Friendly movement,” MacLeod commented.” We wanted to see what Minnesota was doing as they had already become a national model.” Wisconsin was another state that emerged as a leader. And now Massachusetts itself could become an example to other states. To get things started, they consulted Olivia Mastry of Minnesota, a prominent figure in the Dementia Friendly movement. Not long thereafter, Massachusetts became an “early adopter” of dementia friendly practices along with only a handful of other states.
An example of the Dementia Friendly movement was a planned community in the Netherlands established in 2006, called Buurtzorg. It was a remarkable breakthrough. Over time, this Dutch outpost provided a new model for dementia care. A decade later, in the Boston area, I witnessed a large audience at a kick-off event for Dementia Friendly Massachusetts. “We had quite a turnout,” MacLeod noted. On my weekly blog, I had unprecedented “hits” on my blog. Typically at that time, I would get around 300 visits a week. But that week I got around 900 visits. And that wasn’t a fluke. The next week I got close to 600 visits. How this happened is that there was a critical mass of people who wanted to learn more about the  dementia friendly movement. And if the organizers had settled on a smaller venue, much of the vitality would have been sapped. In the logistics business, you have to plan well ahead.
The four tenets of the organization are that people want control for as long they can; people strive to maintain or improve their lives; people seek social interaction; and people seek ‘warm’ relationships’ with others. With that in mind, I am looking forward to observing the movement grow, in the U.S. and beyond.

Friday, January 11, 2019

For real?

I first came across Dr. Dale Bredesen in November 2016, when he was invited to appear on the Today program. Now, he has published a book of close to 300 pages, in which he claims that he has found the key to not just stop Alzheimer’s, but reverse its damage. For many people in the field, this might sound like science fiction. But, after all, solving Alzheimer’s disease has become the holy grail of the early 21st century. It’s not just the terrible toll inflicted on the victims. Family members are often drafted into being “volunteer caregivers,” which can put pressure on the whole family.
            The book opens with the fact that even the gods of the biotechnology world rarely make a splash, and when they do, failure is almost foreordained. This was the case in 2018, when Biogen almost overnight raised the hopes of people with dementia to think that Alzheimer’s might be domesticated—the way AIDS became a manageable disease after Magic Johnson showed the world that the HIV virus could be just another manageable disease.
But here is a downbeat message that we might be hearing for decades: The human brain is too complex to be “fixed” by mortals. My understanding is that only the most recently diagnosed would benefit, should a breakthrough drug arise, not people already into the middle phase of Alzheimer’s, like me. That was my takeaway. Am I fatalistic? Not really. But I am realistic. The failure of Biogen’s compound set me back, and I started to direct myself to focus on the time I have left—the original purpose of my blog.
But as Bredesen puts it, “Alzheimer’s disease has become part of the Zeitgeist.” I rarely go a full day without seeing or hearing about the topic, whether online or in print or on the radio or in a podcast. Bredesen is ambitious. A key insight of his is that Alzheimer’s is not a unified disease, but three distinct pathologies. “Each one requires a different treatment. Treating them all the same way is as naïve as treating all infections as the same.”
Bredesen introduces “Kristin,” who at the time was considering suicide. Her mother had died from the disease after 18 years of decline, “And at the end Kristin had suffered alone, for her mother was no longer sentient.” At 65, Kristin started to show the telltale signs of Alzheimer’s herself. Common symptoms arose: “Unable to remember numbers, she had to write down even four digits, not to mention phone numbers.” She began to get lost in what previously was common terrain. According to Kristen, she confided to a family member, “Did you know I had Alzheimer’s disease?” The family member answered, “Of course, it was obvious. I just did not want to say anything to you about it.” Reluctantly, she retired. For Bredesen, the next sentence is crucial: “Alzheimer’s disease does not arise from the brain failing to function as it evolved to [author’s italics]. And “Kristen was Patient Zero,” according to Bredesen.
Since 2016, Bredesen has been illuminating his main point. Chapter 3 is titled, “How Does It Feel to Come Back from Dementia?” Confident? Most important, it doesn’t tell you what Alzheimer’s disease actually is.
Chapter 4 provides a primer for the Bredesen program. And this is where I have a qualm. Not a big one. More of an inconvenience. From early on, and even before my diagnosis, I was following the Mediterranean Diet. After I was diagnosed with early-onset Alzheimer’s, I was gladdened to learn that the Mediterranean Diet was for real. After I left my job, I began to dose myself daily. That was well more than three years ago. But the two approaches to diet are almost opposites. Let’s just say that I am playing on someone else’s football field.
Bredesen’s program, called ReCODE, is a three-part approach that is supposed to fight “the three neurothreats (inflammation, shortage of brain-supporting molecules, or exposure to toxic substances) that the brain responds to with what we now know as Alzheimer’s.” The first part is a diet to fight inflammation by avoiding trans-fats, sugar, and gluten. The second part of the approach is using exercise, hormones (“such as oestradiol and testosterone”), and vitamin D and folate to increase “brain-derived neurotrophic factor (BDNF).” Finally, he says to “eliminate toxins” as “an effective way to reduce toxic induction of amyloid.” This last approach requires identifying your exposure to toxins, removing their source, “and then detoxification that includes ... detoxifying food such as cruciferous vegetables, pure-water hydration, sauna-based removal of a specific class of toxins, and increasing critical molecules such as glutathione.”
So what are my options?  Be stubborn? I’d be a fool not to give the Bredesen approach a chance. But in the weeks and months ahead, I may be pining for my favorite foods, which include steel-cut oats, soaked overnight, and then cooked another 10 minutes in the morning. Of course, I would follow the Bredesen protocol for a trial, assuming that I can get into some kind of trial. But I will miss my olive oil, and my daily crusty bread as my communion loaf—assuming that Bredesen’s diet doesn’t pan out. I have doubts. Too many brilliant minds have met their match in the sticky amyloid in the human brain.