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...