When does AD begin?

Note: I am in the process of developing a dedicated blog for our book. Until it is ready to go public, I may copy a few posts to this blog to solicit feedback. This is the first post to the new blog.

Seven years after being diagnosed with dementia, one of the questions that Richard Taylor (http://www.richardtaylorphd.com/) asks is whether there was one moment when he did not have Alzheimer’s and then one when he did. We are a society that is fond of precise answers. But in most things that truly matter, especially when they have to do with identity and relationships, precise answers are denied us. Was there a moment when I was not in love with my wife and then one when I was? A moment when I did not enjoy music or literature and one when I did?

Presumably there is a specific moment in which any disease comes into being. But since we still do not know what actually causes Alzheimer’s, it is impossible to define that moment. Is it the formation of the first speck of plaque on the brain? Or does that speck form in response to another agent we have not yet identified that appeared months, even years earlier? Can an oncologist say with precision when a single cell goes rogue and cancer comes into being? Even the common cold resists having its genesis precisely defined—our bodies are exposed to various viruses daily, rebuffing most until one somehow reaches critical mass and reveals itself through a scratchy throat or a congested nose.

So we generally define the moment where a condition begins through the appearance of symptoms followed by a diagnosis, whether we are speaking of falling in love or suffering a head cold. In the case of dementia, symptoms are often first recognized in hindsight—“now that I look back…” The changes occur in such small increments that there is almost never a clear demarcation between “a little forgetful” and diagnosable progressive memory loss. This can lead to vigilant monitoring of our loved ones (“Honey, you just told me that!”) and whispered conversations during family gatherings (“Does she seem any different to you?”), which generally succeed only in raising anxiety levels for all concerned. Whether we are speaking of falling in love or developing dementia, we are talking about a process.

This will change, at least in some ways, as early testing becomes widely available. People will be learning that they “have” Alzheimer’s disease years, even decades, before they begin to show symptoms. This is mostly a good thing. It will provide a strong incentive for the lifestyle changes that may delay the onset of symptoms or mitigate their severity when they do appear (although we need to emphasize the word “may”). It may open the way to new forms of pharmacological intervention that will further delay the onset of symptoms—the failure of recent drug trials suggests to some that the time to treat AD effectively is before it is fully developed.

Meanwhile, the part of us that demands precision will lead to a growing number of carefully defined clinical categories (MCI, “mild cognitive impairment,” will likely appear in the new edition of the DSM) that may succeed only in reducing complex human beings to a narrow diagnostic label that confines, limits and provokes greater anxiety.

In our book we tell the story of a woman who grew up in Taiwan in a multi-generational household. It was only when she came to the United States to attend medical school that she realized that her grandfather had AD. “He changed as he grew older, but to us he was just Grandfather.” We will all change as we get older, and the changes we experience will not always fit into a tidy clinical category. After a thorough cognitive evaluation, a friend’s mother was given the diagnosis “pleasantly confused.” It is not a diagnosis likely to make its way into the DSM, but I would like to see it in wider use, for while it speaks of change and loss, it also speaks of laughter, love and joy.
Perhaps one day we will have the medical resources to successfully prevent or treat AD and other forms of dementia, but that day is likely decades off. Meanwhile, cherished friends and family members will be journeying into various forms of progressive memory loss, some of which will fit into tidy clinical categories and some which will not. In either case, they will remain whole human beings who need to be surrounded by people who love them, appreciate them and enjoy them. We are all living with dementia, and we need to learn how to respond to it with love and laughter rather than fear and anxiety.

Contemplating Thanksgiving Hymns

Our culture has a particular talent for taking a festival deeply invested with sacred meaning and adding layers of sentimentality, silliness and commercialism until the root meaning is all but lost. Thanksgiving has fared better than some holidays, but the added layers include gastronomic overindulgence, an orgy of football, and the firing of the opening gun for Christmas shopping season (which many retailers are now beginning on Thanksgiving Day itself).

But under all this added baggage is the notion that we should pause from all of our busyness to give thanks, and that our relationship with the Creator must begin in gratitude. These are among the few things about which none of the major world religions disagree, making Thanksgiving a religious (“spiritual,” if you prefer) festival that cannot be claimed by a single faith. Across the land, interfaith Thanksgiving observances will be celebrated. Which is a very good thing in an era marked more by conflicts born of religious differences than by affirmation of the things we hold in common.

That great chestnut of a Thanksgiving hymn, “We Gather Together,” was written in 1626 by an unknown Dutchman to celebrate the Netherland’s liberation from Spanish rule. While it is certainly a hymn of praise, it makes no specific mention of gratitude, which has always struck me as a bit odd. “Now Thank We All Our God,” which fairly bursts with gratitude, was written in 1636 by Martin Rinkart, who was then serving as a pastor in the walled city of Eilenburg, Saxony, at the height of the Thirty Years’ War. Eilenberg sometimes served as a place of refuge, but at times it was also beset by famine and pestilence – in a single year, Rinkart buried more than four thousand people. And yet he dared to express gratitude to the Almighty! We, who have so much for which to be grateful, should be humbled, or perhaps ashamed.

As we gather about Thanksgiving tables this week, persons of many different faiths will express grateful thoughts before diving into the feast. In some settings the words will be brief and perfunctory, in others, heartfelt. People will give thanks for good health, for family and friends, for the many blessings we take for granted. Like the unknown Dutch composer, some will give thanks for freedom. And a very few, like Martin Rinkart, will dare to express profound gratitude even in the midst of horrible suffering. We are here; we have this day. And that alone should make us grateful.

Learning Patience from Craftsmen

I recently wrote a piece about the reliability of tradesmen. At the other end of the spectrum is the frustrating eccentricity of skilled craftsmen. Craftsmen perceive time differently than most of us do. They are not much interested in arbitrary deadlines – a project is done when it is done. They communicate through their work, not through emails or phone calls. If one wishes to own a product made by a skilled craftsman, one must learn to be patient.

For example, Susan owns a kayak paddle that was custom-made for her by an extraordinary paddle-maker. Because she has arthritis in her wrists, he made it as light as possible (18 ounces) and fabricated a shaft with a smaller than average diameter. It took him awhile to complete it, but Susan loves that paddle. It is bit fragile, and 18 months ago the shaft broke just above the blade. I tracked the maker down (he had moved from California to Hawaii) and he offered not only to fix it, but to improve it. I cut the blades off, shipped them to Hawaii, and waited. And waited. A full year I waited until he finally secured the part that would make it better than before. Despite my pleas, there was no way that paddle would leave his shop until it was the best paddle he could make. I sincerely hope that it never breaks again.

Then there is the case of my best ukulele, made by John Kitaris, a gifted craftsman who also lives in Hawaii (which seems to be a Mecca for eccentric craftsman). The first two he made for me suffered reverse bowing, which made the strings buzz, so he put a lot of effort into getting this one right, upgrading me to beautiful koa wood.

I contacted a highly-recommended instrument repairman in Madison and asked if he could install a pickup in the ukulele for me. He could, but insisted on using only the pickup specifically recommended by the maker. This pickup is manufactured for John in Korea, and he normally allows them to be installed only by one of his authorized shops, none of which is anywhere near me. This plunged me into the skilled craftsman Bermuda Triangle: the guy in Madison would not do the work without a pickup from the instrument’s maker, and the guy in Hawaii only checks his email once a week then promptly forgets what he read. After two months and seven increasingly desperate emails, I finally received a reply that read in its entirety: “I thought I sent that to you.” Another two weeks and several unanswered emails later I am still waiting, and likely will for some time to come. Like I said, you must learn to be patient.

When your sink backs up or your furnace goes out, you need a tradesman who will arrive as quickly as possible. But ukuleles and kayak paddles do not carry a similar sense of urgency. When I finally get the pickup – perhaps this month, perhaps later – I will take the instrument to Madison, where the skilled craftsman will do the work when the spirit moves him. When I finally get it back it will look and sound beautiful and I will appreciate it all the more because I had to wait. One day a guest will admire the instrument and ask about it, the poor fool, and I will smile softly and say “let me tell you about that ukulele…” All things that are finely crafted have stories woven into them.

Postscript: UPS just pulled up with a box containing two pickups, six sets of strings, and no invoice. I will send one pickup back and insist on paying for the other. Craftsmen: they frustrate you, they delight you, they leave you scratching your head...

A truly Christian perspective on the "Ground Zero Mosque"

I have never posted the thoughts of another person on this blog, but this note from Miroslav Volf at the Yale Center on Faith and Culture is worth sharing widely:

Dear Friends: In recent months a heated debate has surrounded the plans to build an Islamic Center near Ground Zero. The threat of burning the Qur’an by Pastor Jones has added fuel to the fire. Now spirits have calmed down a bit, even if mutual suspicions are strong, and fronts have hardened. But a large question still remains: It is not merely about what ought to happen with the plans for the Park51 Islamic Center, but it is above all about how Muslims and Christians should relate to one another in similar situations in the future—whether they arise in the Western world or Muslim-majority countries.
The media has sought out Joseph Cumming, the Director of the Center’s Reconciliation Program, to give his expert opinion on the matter. This article is longer than our usual e-newsletter pieces in order to adequately address this complex issue. Please enjoy Joseph’s article, which suggests ways forward for Muslims and Christians with reference to wisdom from the Bible and Qur’an. -Miroslav



The Park51 Islamic Center near Ground Zero: Principles from Jesus
By Joseph Cumming, Director, Reconciliation Program

Secular pundits have debated endlessly the proposed Islamic center near Ground Zero. Does Christian faith offer resources for thinking faithfully about this controversy? Here are a few:

False witness
Jesus says, “Thou shalt not bear false witness against thy neighbor” (Mt 19:18). We sometimes forget that this is one of the Ten Commandments alongside commandments against murder, stealing and adultery. Imam Feisal Abdul Rauf has been accused of supporting terrorism and of other grave offenses. FactCheck.org has documented how his words have been taken out of context, distorted, exaggerated or even fabricated.

Love vs. Fear
Scripture says, “Perfect love casts out fear” (1Jn 4:18). Love may not always tell others what they want, but it refuses to give in to fear. Much of the media storm surrounding Park51 has appealed not to our moral sensibilities, but to our fears. Christians must not allow fear to motivate moral decisions.

Do unto others…
Jesus says, “Do unto others as you would have them do unto you” (Luke 6:31). If Christians want Muslims to defend religious liberty for Christians in Muslim-majority countries, then Jesus’ words mean we must speak up for Muslims’ liberty when they are in the minority. In the town of Bekasi, Indonesia a Christian congregation has long sought to build a church on land they own, but has been prevented by Muslims who said to the BBC, “The non-Muslims should understand the feeling of the Muslims here. We are the majority here.” In the meantime the congregation has held makeshift, open-air services on their property, but two Sundays ago their pastor was beaten and one elder was stabbed by Muslim assailants. Last Sunday police barred the Christians from holding their worship service. Christians who would like Muslims to speak up in defense of these Christians’ rights must themselves speak up for Muslims’ rights to build mosques and worship freely.

Someone may object that Ground Zero is hallowed ground and therefore different from Bekasi. Muslims respond that Park51 is two blocks away from Ground Zero, and that four blocks from Ground Zero is a mosque which predates the World Trade Center, and that 32 innocent Muslims died on 9/11. Jesus’ do-unto-others principle adds another dimension: if we would not want Muslims to ban, say, Iraqi Christians from building any churches in the entire Abu Ghraib neighborhood of Baghdad, because Christians committed atrocities there, then we should not deny peaceable Muslims the right to build an Islamic center in Lower Manhattan.

Some argue, “We’ll let them build a mosque there when they let us build a church in Mecca.” But immediately after enunciating his do-unto-others principle, Jesus added, “Do good, expecting nothing in return” (Luke 6:32-35). We must defend liberty for others whether or not they reciprocate. Christians should set a moral example for the world, not wait for others to lead.

Hate crimes
Last summer a dear American friend and colleague of mine was murdered by Al-Qa‘ida in North Africa because of his Christian faith. I was grateful to Muslim leaders who spoke out condemning this hate crime, and to the government, which erected a monument in his honor highlighting the biblical words “God is love.”

A few weeks ago a Muslim taxi driver in New York had his throat slashed by a college student who cursed him for being Muslim. News media paid only passing attention to this, as it was just one of numerous hate crimes against Muslims in the context of anti-Muslim rage over Park51. Jesus’ do-unto-others principle says that if I want Muslims to speak out against the murder of my friend, then I must speak out about hate crimes committed against Muslims.

“Do unto others” in reverse
Similar to Jesus’ do-unto-others principle, Islamic tradition reports that the Prophet Muhammad said, “None of you has truly believed until he loves for his neighbor what he loves for himself.” This means Imam Feisal and the Park51 team also need to imagine themselves in the shoes of their non-Muslim neighbors, and must be sensitive to the pain Muslims might feel if the situation were reversed.

Shortly after the U.S. invaded Iraq in 2003, some Christians wanted to erect a large cross in downtown Baghdad. They intended to communicate a message of love and reconciliation, but Iraqi Muslims perceived it as a message of militant conquest. I was among Christians who urged that this was not a sensitive or effective way to communicate a message of love. These Christians had a right to free expression, but this was not the wisest way to exercise that right.

Imam Feisal’s goal is to promote tolerance, interfaith understanding and healing. But reaction to Park51 has had the opposite effect, bringing out intolerance, and opening not-yet-healed wounds. The next time I speak with Imam Feisal, I will affirm strongly that he has a right to build his center just as planned, and that I will defend that right. But I will also suggest that he will accomplish his goal more effectively and sensitively if he voluntarily and uncoercedly considers revising his plan – perhaps moving it, perhaps giving it a more thoroughly interfaith character, or perhaps just consulting carefully with friendly Muslims, Christians, Jews and others about how this crisis might be defused. I am encouraged that he currently appears to be doing precisely that.

In the meantime, however, it is not the place of Christians to lecture Muslims about how they should live the Golden Rule. Jesus says we must “Do good, expecting nothing in return.” And Jesus’ words about logs and specks (Luke 6:41–42) suggest we must first defend Muslim fellow-citizens’ liberty, and only then will we “see clearly” to ask Muslims about their actions toward non-Muslims.

World Famous Hot Beefs in Abbotsford

As we do more speaking on themes related to our book (aging, dementia, friendship and community), Susan and I are becoming practiced Low Budget Travel Warriors. Even if the organization sponsoring the conference is paying our expenses (which is not always the case), we are keenly aware that their budget is very tight. So we have learned the art of identifying the least expensive motel that is not absolutely revolting and finding an inexpensive place to eat that offers some flavor of the local community. Two weeks ago we had dinner at Polecat and Lace in Minocqua. Those who have never experienced a traditional Wisconsin supper club, particularly one located in the north woods, simply have no frame of reference by which to picture Polecat and Lace. In Wisconsin supper clubs, waitresses do not retire simply because they have turned 80; they continue to dish out walleye and broasted chicken with good cheer.

This week we did a full-day workshop at the Clark County Health Center located in Owen, Wisconsin. It is a lovely facility which, like many county nursing homes, was originally a working farm. The nearest motel was in Abbotsford, a city of 2,000 when all the motel rooms are full. The only restaurant in Abbotsford was closed, which is how we found ourselves dining at Duke’s Lanes, home of the “world famous hot beefs.” Duke’s beefs come in three forms: hot beef, hot beef with mashed potatoes, and a hot beef and mashed potato sandwich. So we sat at the bar, eating our hot beefs and watching a woman’s bowling league compete while chatting with Lisa, the bartender, about local demographics (as the rest of Wisconsin ages rapidly, Clark County is projected to remain relatively young, likely because of the large Amish and Hispanic populations).

We had opted to stay at the Rodeway Inn, because the only other option was an eight-room mom-and-pop motel that looked particularly grim. Rodeway’s business model seems to consist of purchasing failed motels and changing the signs; this one was a Sleep Inn that sat vacant for two years. When we checked in the computers were down, and a woman who appeared much older than our waitress at Polecat and Lace was down on her knees behind the counter. “Trying to fix it?” I asked. “Just praying that the guy who knows how to fix it will show up” she answered.

Our room had everything we consider essential: hot water, towels, free wi-fi and a passable bed. It was clean, always a relief, but even though the building was proudly proclaimed to be “smoke free,” the odor of ancient cigarettes wafted from the carpet and drapes. The light over the bed was wired to a motion sensor, so several times when I rolled over in the night the light came on; sometime around three we figured out how to override it. Not a bad night by our standards.

At 6:30 we went down to the breakfast room for weak coffee and raisin bran. I am not fond of motel breakfast rooms with their blaring televisions, preferring silence until I have had my first cup of coffee. There was only one other guest in the breakfast room. Unfortunately, he was a motivational speaker, the kind of man who opens his eyes when the alarm goes off and shouts “I’m going to make this a great day!” I tried to imagine who he was going to address in Abbotsford. A meat-packing plant? An Amish farm? The world is full of wonders.

Things went very well during our presentation at the Health Center. But my favorite moment was when a woman approached us to say “I saw you last night!” Strangers are noticed at Duke’s, and apparently there was much speculation among the bowlers about what we were doing there.

We do this public speaking because we are deeply committed to opening up new ways of thinking about aging and dementia. But the bonus for us is that we get to meet delightful people and experience interesting places we would never have chosen to visit otherwise. The people we meet tend to be kind and friendly, which replenishes our faith in human decency in this era of conflict and division. By the way: we took a pass on the hot beef and mashed potato sandwich, which proved a wise decision. Lunch at the Health Center was hot beef and potatoes.

Tradesmen and Civility

Folks representing various trades have been trooping through our house in recent weeks. A young man from WE Energies installed a new thermostat that allows the company to turn off our air conditioner during a power emergency (in return, they take $50 off our annual bill). An electrician spent several hours tracing a circuit to find where we had “lost our neutral,” which is a bad thing to lose if you are fond of electricity. The furnace technician paid a call when the furnace showed no interest in providing heat. Then there is the guy who is replacing our crumbling front stoop, and the tree service that will remove a stressed ash tree before the ash borers get to it. These expensive visits seem to come in waves, which is why it is good to save for a rainy day.

I found myself recalling the popular images of tradesmen in years past, largely shaped by television situation comedies. The plumber would arrive with a cigarette dangling from his lip and track mud across the carpet on his way to the bathroom. His battered truck would drip oil and transmission fluid on your driveway. And he was required by some mysterious plumber’s code to wear pants slung so low that when he bent over the toilet… Tradesmen never came when they were supposed to. Tradesmen were crude and foul-mouthed. Tradesmen needed to be watched like a hawk because otherwise they would attempt to cheat you. When you called a repairman you needed to gird for battle.

I doubt that any of these popular images ever had a lot of truth behind them. But there is clearly a new focus on customer service in the trades these days. All of the folks I mentioned above arrived when they said they would. Several put on paper booties before they entered the house. They carefully explained what they had done and had me examine the places where they found problems. Each was skilled, knowledgeable and polite. They did not leave until they were certain the problem was resolved to my satisfaction.

I suspect the weak economy has something to do with this high level of customer service. Another likely factor is that the companies providing these services have gotten larger as it becomes less viable to work as an independent contractor because of health insurance and other overhead costs. Larger companies can provide training to their employees, including training in customer relations.

I see some of the same thing in retail stores. Cashiers greet me cheerfully and ask “Did you find everything today?” (“No,” I sometimes reply. “I was looking for world peace and quality health care for all the world’s children.” But I lean a bit towards being a smart aleck). Sadly, as cashiers become friendlier and more polite, customers seem to become ruder, yakking on cell phones while completely ignoring the cashier’s presence. Is our society becoming more civil, or less? I go back and forth, although political campaign ads make it hard to build the case for increasing civility.

Every encounter with a fellow human being, whether with an electrician, a cashier or a friend, is an opportunity to share a bit of kindness and joy. It sounds hokey, I admit, but that does not make it less true. Civility is built and maintained one conversation at a time.

Friends and Neighbors

If you live in a large metropolitan area, you can choose your friends on the basis of shared tastes and interests. If you usually vote Republican, most of your friends will be Republicans. If you are a sports fan, your friends will likely be fans as well. Your friends are likely to have incomes similar to your own, read the same books you read, share the same values.

But if you live in a small community or rural area, your friends will be the people who are simply there. As folksinger Greg Brown once noted; “Nobody in the U. P. talks about ‘forming an intentional community;’ up there you damned well better know your neighbors!” Folks who do not have a lot in common learn how to get along and how to care for one another because they really have no other choice. In this sense, there is more diversity to rural friendships than to urban ones.

We were reminded of this while at our cabin last weekend. Many neighbors stopped by in the course of our time there to chat about the things people at cabins talk about – whether a certain tree needs to come down and who could do it cheaply, etc. We learned that Mel, the gruff and opinionated former Marine on the far side of the lake, had died unexpectedly a few weeks ago, and took our kayaks over to offer our condolences to Julie, whose home we had never been in before.

But above all we spent time with Mark and June, the next-door neighbors who had not made it to their cabin for at least three years. Mark is 93, June 89, and they both have significant health challenges. In all honesty, Mark has been something of a challenge for me through the years. He has a dusk-to-dawn light that shines into our bedroom all night because he is concerned about escaped prisoners (there is a state prison 12 miles away from which no-one has ever escaped, but if one did he would doubtless make a beeline for Sixteen Mile Lake), keeps several guns at his cabin and fires them at random intervals, and is equally dedicated to Jesus and Rush Limbaugh.
Would I have chosen Mark as a friend? No. Am I glad to know him as friend? Yes.

When we arrived I found that Mark had mowed most of our lot. He can no longer drive, nor can he walk far without assistance, he has little sight left, and he certainly cannot get on or off his ancient John Deere lawn tractor himself. But once he is on it he is in his personal version of heaven (he farmed downstate for seventy years), and he was not about to let a property line spoil his fun.

But our most wonderful moment came the evening before we left. We were sitting on our deck, thinking about fixing dinner, when June made her unsteady way over, soon followed by Mark. The beach at Au Train is a glorious one, and they had been there earlier in the day. With her daughter on one side and her granddaughter on the other, June had waded out into Lake Superior until the water was neck deep, then plunged her head under. She was flat-out giddy with excitement as she described the experience. Dinner was delayed by over an hour as I brought out my ukulele and we sang old Baptist hymns together.

We are guessing it will be the last time they make it to their cabin, but who knows? But if I never see them again, I will have wonderful memories of that evening together. Someday, God willing, the aged couple on the lake will be us, and I hope there will be younger neighbors to offer us their hospitality and friendship. Friends and neighbors do not have to have a great deal in common, they just need to be there for one another.