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.


Friday, December 28, 2018

AIDS in the eghties

Not long  after I was diagnosed with early-onset Alzheimer’s, a gay  colleague of mine invited me to have lunch in Boston’s Italian North nd. During our lunch, I asked him if he ever lost someone to aid to AIDS. My colleague was frank. He told me that he had been involved with an older man who died soon quite soon after  the affair. My aim was to compare Alzheimer’s to AIDS. But the comparison struck as  too facile.
This topic almost fell into my lap. I was walking close to where I live, and someone was giving away books. The one I took home turned out to be a gem. Personal Dispatches: Writers’ Confront AIDS. My favorite by far was The Fear. And why not? 1987 was the year, but know one knew when a breakthrough, if ever. The challenge  was compared to curbing the Great Influenza in the second decade of the early twentieth century. But there had been litle or none stigma to the flu. AIDS did. Here is how Holleran described the scene in 1987: “The Fear among homosexuals is personal, physical and real. It is easy enough to dismiss the idea that the CIA set out to exterminate homosexuals; it is not easy to dismiss the fact—having lived in New York, before during the seventies as a gay man—one can reasonably expect to be infected.
This was the zeitgeist when this book was published. Pat Buchanen, a longtime right-wing pundit, called for a quarantine in one particular community in Florida, presumably with a high density of gay residents. But as Holleran wrote at the time, “Even with the homeosexual community, however, there was despicable behavior: men who would not go to restaurants, hospital rooms, wakes” or other such venues. The Fear among homosexuals is personal, physical, and real. It is easy enough to dismiss the idea that the idea that the CIA set out to exterminate homosexuals; it is not easy to dismiss that—having lived. In one of Holeran’s most vivid
War. At one point in this brilliant essay, Holleran states, “The Fear is a god to which offerings must be made before sex can commence. Sometimes it refused it…Even safe sex leads to the question…Sex and terror are twins. Death is a hunk…and loathing…This remarkable essay ends from an invocation from Jonathan Edwards, the eighteenCentury preacher who wrote the sermon, under the title “Sinners in the Hands of an angry God.”
And I was glad to learn that Andrew Holleran had survived the plague of AIDS. What a fine writer he is.

Friday, December 21, 2018

Too many layers

Jeff Kramer and I have been friends since we met on the Western Front, the campus newspaper of Western Washington University.
A decade later, Jeff almost perished in the 1991 riots in Los Angels, working as a stringer. I remember getting my copy of the Boston Globe the next morning wondering if my closest friend had perished overnight. Perhaps he was paralyzed below the belt? That were my musings on that terrible night. Much later, my own health crisis commenced, slowly, almost unperceptively.
On a recent winter day, Jeff and I embarked on a leisurely bike ride. I spent a good deal of time planning how many layers I would need. My spandex tights came first. Then came my padded trunks.  My simple goal was to be not too cold, not too warm. Would that be possible? Early on, I was quite comfortable, and I was congratulating myself for taking the time to wear the correct numbers of layers. I had started with my purple Under Armor, a gift from the Alzheimer’s Association. Next came a cotton maroon pullover. After that, I put on my black fleece jacket. For my shell, I was wearing my Seattle Mariners’ warm-up jacket.
A person free of dementia would have had no difficulty to find all the objects that I had needed. Of course, I would bring my phone, and stow it in the spandex pocket that is designed for that purpose. Another must-bring item, of course, was my keys. Without them, I would have no way to secure my bike if we stopped for a break. After my former bike was stolen in 2o15, Jeff bought me a high-quality replacement U-bolt lock.
Whenever I ride, I make a point to be able to feel where my keys are. I also usually bring a Cliff Bar, a compact source of energy. This is more important in the summer, but I was still glad that I had the Cliff bar I took with me. So far, everything was going well. Jeff and I were riding at a leisurely pace in the afternoon sunlight. Early in the day, we thought about riding all the way to Bedford, a 22-mile round trip. When dusk was settling in, Jeff suggested that we stop at the next café.
 The difficulties emerged when I had to get off my bike. Even in summer, I sometimes need a minute or two get the correct angle to  secure my U-bolt. But in the darkening bitter afternoon wind, I was getting seriously confused. Jeff was asking reasonable questions, but I wasn’t providing cogent replies. I was looking for my reading glasses, but at the moment, my glasses were irrelevant. And I would have been better without them. I might have been better off without them. The frames kept snagging on other objects. But once Jeff led me into the café, I starting thinking logically again. And Jeff made a point of cooling off the beverage before I quaffed it.
We entered a coffee shop. Jeff got me a hot chocolate, with whipped cream. Normally, I try to avoid refined sugar, but on this day I quaffed the warm chocolate as fast as I could. Jeff also made sure that the coca was temperate, not scalding. But other things awaited us. For weeks, I was planning to check my batteries for my bike headlight, but I never got around to it. And I didn’t realize that my red tail light was functioning. All I had do to was to turn it on.
But because I was literally in the dark, I couldn’t see it on top of my helmet. At a CVS on Massachusetts Avenue in Arlington, I waited for Jeff to buy replacement batteries for my bike headlight I stayed out  to be with the two bikes. Once we left the store, we picked up speed, thanks to the downward gradient. By now, the sky was inky black. I knew we were not too far from Spy Pond in Arlington. I could see the bike lights in front of us in the dark. I knew the bikepath was far enough away from anyone ending  up in the pond. I was confident that the bikepath had enough ambient light to discern other cyclists. I was mistaken. I could discern that the pond was not a hazard. But a few minutes later came the collision. No, better to call it a soft-landing. No one fell over. A male’s voice. Startled, and angry, but not injured. I was already riding toward back to him, to see if he was hurt. He wasn’t. And I was glad that the other rider didn’t make a big thing of the incident.
And if you are planning to ride at dark in winter this year, don’t do what I did. The last thing I wanted to be on my conscience is some stranger’s concussion. Or, perhaps, a lawsuit.