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If you're new to this blog and want some context for it, read this post from the day I announced my Alzheimer's disease and this post about the day I announced I had lost it. For more info, visit my website with my autobiography and all blog entries in chronological order for easier reading to catch up. There's also a sermon on the spiritual lessons I've learned through this journey through my damaged mind.

Tuesday, April 22, 2014

Bus Schedules

Washington DC
Between a viral infection that has knocked me about the last several weeks and preparing for a lecture at the Michigan State University medical school, I haven’t been able to blog.  Fortunately, I did feel better enough for a few days last week to take the train/bus combo to Michigan and fulfill my responsibility to give the lecture, but even on the way back I started to feel weak and sleepy again.  It’s gotten a little better, but it’s time to see a doctor other than the one looking out at me from the mirror.

I’ve wondered two or three times whether the fogginess and weakness that has accompanied the other flu symptoms is a result of some further damage to my brain.  I doubt it, but I can’t help thinking about it.  The most likely cause of my cognitive decline is vascular (those little strokes), so—although it’s unlikely—any sudden change in my mental status could signal a sudden worsening of my cognitive decline.

Even without the current fogginess, the impairment seems to be worsening slightly over the past several months.  Last week I was trying to make a set of bus reservations.  Megabus can certainly make travel inexpensive, but you can only make reservations online.  They also make you figure out your own connections if you have to change buses.  I was trying to make reservations to travel from here in Washington to New York City then transfer to a bus to Albany NY and make the return trip a week later.  I had to:
a) figure out my desired arrival time in Albany,
b) figure out the needed departure time from New York to Albany, and
c) then go back and figure out the Washington departure time to get to New York on time for the Albany bus.  
d) Then I needed to reverse the process a week later.
It sounds a little complicated when I write it out like that, but this kind of task has never been difficult for me.

I just couldn’t do it.  I would get the day of the week confused, the arrival and departure time in NYC confused, forget when I wanted to leave or when I wanted to get there.  Several times I had all four reservations about to finalize but then I double-checked and one of them had the wrong time or even the wrong date.  Then even those that were right started to look like they were wrong, and I had to go through the entire process in my head to double-check it.  I should have written it all out on paper, I suppose, but I got so frustrated that it didn’t even occur to me.  After forty-five minutes, I finally got the trip from Washington to New York right and the trip from Albany back to NYC right, but I couldn’t get the other two.  I finally had to ask Marja for help.

Before my cognitive impairment, it would have been humiliating to tell Marja I couldn’t do it, but at least that is no longer true.  We both know what the trouble is, so she was happy to finish the task.

Having to hold several related things in my mind while working on each separately is the most frequent manifestation of my cognitive decline these days.  Something similar happened trying to compare two almost identical copies of my speech; there’s a not-very-complicated automatic procedure for that exact thing in Microsoft Word, but it took me the longest time to get the correct documents in the right order and then—as I went through the combined document—I kept getting confused about which option from which document was the one I needed.

It frustrates me:

  • I can’t tell whether my confusion is really getting worse or it just seems so. 
  • Almost every time I try to describe something like the ticket episode above, the other person will say, “Well, I’d get confused, too.”  I just nod my head.
  • And then I remember my intention to let these kind of useless comparisons go.  I’m not scared of the future, so why let myself get worked up about minor changes?

In September 2012, when I first received the diagnosis of “almost certain” Alzheimer’s, I would have been extraordinarily grateful to know that in April 2014 I’d be worried about such minor problems as these. 

I could just remain grateful and take each day as it’s given.

Tuesday, April 08, 2014

Depression and Alzheimer’s

Washington DC

A reader left a comment on a recent post pointing out that depression is also a relatively common cause of cognitive impairment.  Because of childhood trauma, he’d also experienced anxiety and PTSD, and I suspect they belong on the list of potential causes, too.  People sometimes ask me if depression makes a person more susceptible to Alzheimer’s.

The question is important.  There is certainly an association between the two, but the cause runs the other way: Alzheimer’s (or any other cognitive impairment) can cause people to be depressed, but there is no evidence that depression causes Alzheimer’s or even makes it more likely. 

So depression must be on the list of the causes of mild cognitive impairment.  If medical evaluation has ruled out the most obvious of the others, then depression moves higher in the list of possibilities.  If a person is seriously depressed, one can see how the depression might affect her ability to think well.  

Usually depression is obvious, but not always.  There is (or, at least, was) a stigma around the disease and people don’t want to acknowledge their inner pain.  They need to cover it up and mask it with a smile.  Even family members may not know how much the person suffers. 

In some cases the people themselves don’t even know they’re depressed.  I’m an example.  I now know that I was depressed for the first half of my adult life, but at the time I didn’t recognize it for what it was.  I didn’t have the usual symptoms: sleeping too much, being dysfunctional at work, thinking of suicide, and so on.  But I was almost always dissatisfied with my life, feeling I should be doing better, hyper-aware of my mistakes despite having what might have appeared to be a perfect life as a successful small-town doctor.  I was mostly miserable.  I thought my misery was caused by the difficulties of medical practice or my unreasonable expectations of life.  The possibility of depression never entered my mind.  It was more than a decade later, after I’d begun adequate anti-depressant medication and was beginning to experience how a non-depressed life felt, that I recognized I had depression. 

So, when faced with a person who has dementia of no discernible cause, a doctor must keep the possibility of depression in mind, even if the patient vigorously denies being depressed.  Having her doctor repeatedly return to the question of depression, however, can be frustrating for a patient who is convinced that she is not unusually depressed.  It can raise doubts about her own perceptions of her emotional state, especially if she does have minor bouts of mild depression.  It may also seem as if the doctor is trying to dismiss the seriousness of her complaints by pushing them off onto emotional causes. It’s a frustrating experience for both patient and doctor that can endanger mutual trust.

Mild cognitive impairment of no obvious cause is difficult enough an experience.  The confusion around depression can make it worse.

Monday, March 31, 2014

My Grandchildren Get It

Napa, CA
 My confusion when trying to perform multi-step tasks continues.  It seems a bit worse than it used to be and certainly more frequent. 

My granddaughter Madeline was mildly ill Friday, so we canceled our plans for an excursion into San Francisco and she, her brother, and I spent much of the day inside playing board games, one of which was Yahtzee, which was new to me.  If you know poker, however, the rules are not complicated.  One of them involved the conditions under which you could roll the die additional times during your turn, and the kids tried to explain it to me.  After a while, it became clear that I wasn’t getting it.  Madeline, nine years old, looked at me brightly and said, “That’s okay, grandpa, we can explain them to you as we go along.”

Madeline had noticed my inability and frustration but showed no hint of surprise, condescension 0r impatience.  She just decided to comfort me: “That’s okay, grandpa.”  We proceeded with the game and, indeed, we had no problems. 

A similar difficulty occurred in a cooperative game Laurel, her husband, the kids and I were playing yesterday.  Each player gets four “actions” in each turn, but the other players can help figure out which actions should be taken.  Needless to say, everyone contributes their ideas one on top of each other, but a consensus usually arises quickly.  I’d played the game with them before and knew the rules.  Nevertheless, I just couldn’t follow the discussions.  Once we got beyond the first or second action, I couldn’t keep them all in my head simultaneously, nor could I figure out how one suggestion was better than another in helping us win the game.  It was like trying to follow scientists discussing a new and complicated theory; I was in over my head.  But this was a conversation the children easily understood about a family game.  I could only sit and watch, a new experience for me.

Trying to make simple calculations in my head has gotten difficult, too.  How many tablespoons are in a cup?  There are three steps:
  1. I know that there are 15 milliliters [ml] in a tablespoon and 240 ml in a cup.
  2. I don’t know without a pencil and paper how many times 15 goes into 240, but I do know that 30 (twice 15) goes into 240 8 times.
  3. Multiply 8 by 2 to get back to tablespoons and you get 16 of them.
It seemed simple to me. On paper it took me perhaps fifteen seconds.  But I just couldn’t keep all three steps in my head at the same time.

The impairment is annoying, but, fortunately, I don’t feel embarrassed or get angry with myself.  Although I don’t have Alzheimer’s, I know that the chances of my cognitive decline worsening are high (see here).  If I don’t dwell on how much I’ve lost compared to my past and if I don’t dwell on what’s coming in the future, things are just fine. 

Most religions seem to recognize the same truth, for instance,
Do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.  Matthew 6:34
I’ve always known this intellectually, but my intellectual impairment seems to have inscribed it in my heart, too. 

It’s a wonderful gift.

Tuesday, March 25, 2014

How Did I Do That?

Napa CA
I’m visiting my daughter Laurel and her family in Napa CA.  I’ve been doing this regularly for the past several years during the grandchildren’s spring vacation so that they’re able to stay at home without Laurel having to make special arrangements.  At 9 and 11 years old, Madeline and Otto are getting to the place where they need less babysitting than they do a simple adult presence.  As I write, they’re quietly entertaining themselves as they usually do in the morning.  In the afternoon, we’ll ride our bikes downtown to visit the library.  Other days we’ll go for a hike, go bowling, visit a museum in San Francisco, or stay home and play board games.  I have never enjoyed younger children, but I certainly seem to be enjoying my grandchildren as they grow older.

Laurel said last night that she hadn’t noticed that my cognitive impairment causing any problems, and, as she said, “You know I’d tell you if I did.” 

But I’ve noticed it.

Otto has a soccer game this Saturday, and I told him I’d be sorry to miss it since I’m starting my three-day return train trip on Friday.  Laurel interrupted and said she thought I was leaving on Sunday.  Knowing better than to trust my memory, I checked my calendar and, sure enough, she was right.  I had reserved my train tickets to leave Sunday morning and arrive in Washington next Wednesday.  But, somehow, for the last several weeks, I’ve had it in my mind (and have been telling Marja and my friends) that I’ll get home on Monday.

Because weekends are special family times at Laurel’s, however, I always try to stay in Napa through most of the second weekend while I’m here.  So I would never have planned to leave on Friday without exceptionally extenuating circumstances; I was bothered by having to leave on Saturday but I never thought it through enough to notice my mistake.  It just didn’t occur to me.  Furthermore, I have no idea why I hadn’t noticed my error since the correct schedule is plainly written in my calendar on both my phone and computer and I check them at least daily.

To make matters worse, I had scheduled a lecture to a well-established community group for next Wednesday morning.  But the train isn’t scheduled to arrive in Washington until Wednesday afternoon.  That meeting, too, was on my calendar and must have been there when I made my train reservations.  I have no idea why I didn’t see the conflict.

And to make matters even worse, last Friday when I became of aware of all of this, I wrote an email to the sponsor of the event canceling my presentation without really thinking through whether I had any other options.  I have previously committed myself to a smaller environmental foot print when I travel so I haven’t flown in years, but I can certainly bend my principles and fly home in time for to offer the lecture.  Fortunately, my email to the sponsor didn’t get through and I was able to make new travel arrangements without panicking her.

These are the sorts of little personal indignities that come with my cognitive impairment.  Friends tell me that they have memory lapses like this all the time; it’s normal for them.  But it wasn’t normal for me before this impairment.  On the other hand, the major impact of my lapses is that usually, they only embarrass me.  It’s not a big deal.  I can live with it.

Monday, March 17, 2014

Better?

Washington DC

Ever since I announced that I don’t have Alzheimer’s but some other form of cognitive decline, I’ve had friends and acquaintances say something like: “I heard the good news!  I’m so happy that you’re better.”  In one way, they’re right, of course.  Having a stable cognitive decline of uncertain cause is better than having inevitably progressive Alzheimer’s disease.  If “better” means “back to normal,” however, then I’m not better.  I have by no means regained my cognitive losses. 

I notice my impairment in three areas: difficulty in finding the right word, forgetfulness, and occasional confusion.  The word-finding problem probably annoys me the most.  I was an intellectual.  I still do some teaching.  For me, communicating has always meant finding the precise word to express myself.  If I want to tell you I’m feeling “frustrated,” synonyms won’t do it.  I don’t mean I’m “irritated,” or “upset” or “disturbed.”  I mean I’m frustrated.

Forgetfulness: I can’t count on my memory anymore.
  •  Have we met before?  It’s my first question on meeting a new person in church.  I just can’t remember.  So I ask.
  • What did we decide at the last meeting?  I have no idea.  If I hadn’t written it down or reviewed it before today’s meeting, it’s disappeared.
  • What did I agree to do before Sunday?  I don’t remember agreeing to do anything.  Everything has to be written down and reviewed.
  • Without my calendar I have no idea what my week looks like.
It’s the intermittent confusion, however, that’s the most bothersome.
  • I was downtown earlier this week and got off the bus to walk the four blocks to my doctors office.  I wasn’t lost; I knew exactly where I was.  I knew where the office was.  DC is laid out in a grid, so there’s no confusion about how the streets go.  I ordinarily have a good sense of direction.  This time, however, I got completely turned around and got to the office only by guessing.
  • Several days ago I was helping a friend.  She was working 21 hours a week and getting paid $900 a month.  What was her hourly wage?  This is not college calculus.  She’s working three hours a day for thirty days in the month, which is $10 an hour.  But I got into multiplying 21 hours by four weeks (84 hours per four weeks) and then trying to estimate the fraction of the fifth week in every month; soon I had to get my pencil out and even then I got confused.
None of these is a big deal.  My impairment isn’t getting worse.  I’m enjoying myself as much as I ever have.

But I don’t want people to think that I’m cured.  I can’t quite explain that, but it has something to do with wanting an honest relationship between us.  Whatever.  In a longer conversation with anyone who’s actually interested, of course, it’s not difficult to describe the situation more fully.  What bothers me is how to respond to someone in the elevator (see here and here) or when meeting each other at the checkout counter.  I think the answer is to suck it up.

It occurs to me that my situation is not that different from many older people with arthritis in their knees, bladder problems, generalized weakness, or widespread aches and pains.  Most of the time, when I ask those older folks how they are, I don’t really want to know!  I’m not interested in hearing their “organ recital.”  I want to express my happiness with their recent successful surgery or hospital discharge or express my concern for them.  What I want from them is a smile and “Oh, I’m doing as well as can be expected.” Or “It’s going okay.”  “Or, yes, I’m happy the surgery went as well as it did.”  If they’re smart, those aching older people will make very sure I want to know before they tell me the truth.

It’s no different for me.  Usually people want to hear I’m okay, that my life is going well, that I’m relieved about not having Alzheimer’s.  They would prefer, at least for the time being, not to enter into my pain.  I can deal with it.  Mostly.

Sunday, March 09, 2014

It's Hard Not to Worry About Uncertainty

A woman in her mid-forties emailed me recently.  She is suffering symptoms of cognitive decline, yet thorough cognitive testing shows no abnormality.  She’s seen her primary care doctor who’s given her the basic screening tests for the causes of dementia than can be tested for, and they’re all normal.  Doctors have suggested that emotional issues (for instance, depression) are the most likely cause (a reasonable possibility that she was willing to consider), but a year of anti-depressants hasn’t changed her cognitive symptoms.   

By definition, then, she has subjective cognitive decline (SCD) and is wondering how to deal with it.  The only relevant medical test she hasn’t had is a PET scan for amyloid to look for evidence of Alzheimer’s.  As I’ve written, the test can tell you reliably only that you don’t have Alzheimer’s not that you do: 20 – 30% of those with a positive scan don’t, in fact, have Alzheimer’s disease.  Unfortunately, too, the scan costs about $4000 and health insurance may not cover it.  As a doctor concerned about health care costs spiraling out of control, I would myself be hesitant to order such a test since it wouldn’t change treatment one bit.  (In fact, as a patient I did decline my doctor’s offer to get the scan and only had it eventually as part of a research study.)  Regardless of how the scan turns out, however, there’s nothing to do about it.

In my own case, what I needed most was reassurance that I wasn’t crazy, that, regardless of the normal objective tests, my symptoms were real and not imaginary.  I sensed the same need in this woman’s email.  Her complaints are real.  SCD is a recognized medical phenomenon.  While medical researchers are only beginning to evaluate it, studies so far have indicated that SCD is strongly correlated with a later diagnosis of Alzheimer’s. 

She wanted any help I could suggest about what was going on and what she could do.  Here’s some of what I wrote back (or wish I had written back).

So why are you having such disturbing symptoms in spite of the normal test results? 

There are a couple of possibilities.  First, you may have had a very high intelligence, giving you a significant “cognitive reserve.”  You know you’ve declined but you’re still well within “normal” range, which is just what you’d expect the tests tell you.  A neuropsychologist mentioned another possibility to me    : There are groups of people (she mentioned doctors especially) who—probably as a result of how they were selected for medical school and how they’ve been trained—just do much better on tests than they do in their everyday life.  They know something’s wrong but they’re just too good at taking tests for it to show up.

One important thing is to recognize that you’ve done everything possible to have your symptoms evaluated.  For most people in a situation like this, half of the worrying and anxiety is wondering whether they should keep fighting for a definitive diagnosis.  In your case, the answer appears to be No.

So what can you do?

You’re a physician and you’re appropriately worried that other people’s lives depend on your cognitive capacities, so you want to reassure yourself that you’re not putting patients at risk.  I haven’t looked into it, but I would suspect that there are places that will assess you anonymously, for instance, a training hospital or state medical society.  (Especially if your capacity as a physician is not objectively compromised, you don’t want to be forced into retirement by overzealous administrators trying to cover their butts if rumors get out.)  In your email, you’ve shown honesty and integrity in revealing yourself.  If it were to turn out that you shouldn’t be practicing, I’m confident you would back off quickly without needing an outside push.

Work at not torturing yourself about whether your symptoms are “real” or not.  If they’re due to some emotional cause, so be it.  You’ve already done what to can to check that out, so let it go.  Wait and see.  Recognize that your spiritual task right now is to live with the uncertainty you’ve been given. 

Your situation can be a learning laboratory for spiritual growth.  Most of us need to learn patience.  Here’s a place to practice.  There’s nothing to do; only live with who you are and what you’ve been given.  Can you accept the uncertainty as your opportunity to learn to live with it without exacerbating worsening your suffering?  The Buddhists point out (not in these words) that the only thing worse than being in a miserable situation is attaching yourself to the goal of getting out of it and, therefore, fighting it. 

That approach rarely ends happily.

Monday, March 03, 2014

Oh Dear!

Washington DC

I spent several hours this past Friday trying to write about the personal implications of the two studies I’d posted about in the previous ten days.  One follows people with mild cognitive impairment (MCI) who revert to normal and are then likely at some point to revert back again to MCI or dementia.  The other follows people with subjective cognitive decline (SCD) who are also quite likely to progress to deeper cognitive impairment.  Since I am a little further on than the people in the either study, my idea in writing last Friday was to show that my chances of progressing to greater impairment were even greater than the folks in the studies and to ruminate about how that has left me feeling. 

As I was writing, however, I wanted to check a link I’d used in the post on people with MCI.  While looking for it, I was dismayed to discover that what I had written over several hours last Friday was almost exactly what I’d written at the end of the post on the MCI study.  That had been only ten days before and I’d spent a lot of time on it.  But now I’d forgotten that completely.  Oh dear!

This is the kind of event that indicates to me how much I’ve declined.  Yet I find myself hesitant to write about it here.  First, I’ve written so much about my memory impairment that I wonder about the value of the repetition.  Second, whenever I talk to others about memory issues like this, I almost always get the same response, “Yeah, I know just what you mean.  It happens to me all the time.  Why, just the other day, I was ….”  Although I don’t actually say it out loud, what I feel like saying is, “Well it may normal for you, but it wasn’t normal for me.”  Third, it feels as if I’m being defensive in insisting on my impairment in the face of the normal neuropsych exam in August.  Several people have written in essence: “Why don’t you just get on with your life instead of concentrating on the negative?  You seem pretty attached to your diagnosis.  Get over it.”

When I think more deeply about my hesitancy, I realize the flaws in my thinking.  The purpose of this blog is to chronicle the course of my impairment. So whatever happens is part of the story, even when I go on and on about my complaints.  I’m not a good judge of what will be meaningful for others.  My principle behind writing for the past year and a half has been that if I’m interested in a topic, then I write about it.  Whether it’s helpful to others or not, they will have to decide.  Further, I’m sure that my situation is not unique.  Others are certainly going through similar confusion, and my telling my story, however boring I think it may be for others, may be of interest, perhaps even of help, to those people.

But these deeper thoughts justifying my writing don’t much change my emotional reaction, which is to question the value of what I do.  I’m not really fishing for reassurance; I just want you to know.

Tuesday, February 25, 2014

Subjective Cognitive Decline (SCD)

Washington DC

As a physician, I always told my older patients that a decline in memory as they aged had nothing to do with the risk for Alzheimer’s.  I have repeated the same thing in this blog several times, for instance, here.  Apparently, I’ve been wrong.

As the results of a number of research studies presented at the Alzheimer's Association International Conference (AAIC) in July 2013, get around, they will worry a lot of older people and bring them to their doctors for testing.  According to the studies, people with subjective complaints of cognitive decline (for example, memory loss) but no objective findings (ie, their tests for impaired thinking are normal) are considerably more likely to progress to mild cognitive impairment (MCI) or dementia than people who have no such complaints.  In plain English, if you think your memory is getting worse as you age, you have good reason to be concerned about Alzheimer’s or other dementia even if your doctor tells you you’re fine.

These findings are in complete contradiction to what most physicians believe, which is that memory complaints are a normal sign of aging and have nothing to do with the Alzheimer’s. 

One of the doctors interviewed acknowledged that “you clearly don’t want to worry everybody who’s aging,” but, it seems to me, since so many people experience worsening memory as we age, these findings are going to worry almost everybody.  I can just see the rush to doctors’ offices.

Each of these studies has a different design.  Some look at people who have already come to their doctors with symptoms; others are more reliable studies of the unselected general population.  Some include data about whether family or friends notice the symptoms; others don’t.  At least one study includes autopsy results (the only way to definitively diagnose Alzheimer’s).  One study includes progression to MCI as well as to dementia.  Another includes MCI or dementia from any cause, not just Alzheimer’s.  The advantage of these multiple designs is that the results are less likely to be due to some flaw in the design.  The disadvantage is that none of the studies has been explicitly replicated, which is usually necessary to draw valid conclusions. 

But all point in the same direction: if you think your  memory is getting worse (or you’re having trouble with other kinds of thinking), you have a good chance of progressing toward something more serious.  One study suggested that your chances are about two out of three.

As usual, these kinds of studies raise more questions than they answer.
  • Is your risk increased (and by how much) if your PET scans (like mine) are normal?
  • If the only problem you have is remembering names, how serious is that? 
  • If your only symptom is not being able to find the right word exactly when you need it, is the risk of progressing to MCI or dementia higher?
  • Is the real problem only with Alzheimer’s or does it include other causes of cognitive impairment?
 It will be interesting to see how these findings affect both patients who worry about their memory and doctors who care for them.

Tuesday, February 18, 2014

What Happens After Mild Cognitive Impairment?

Washington DC

Since I was originally diagnosed with Mild Cognitive Impairment (MCI) almost a year-and-a-half ago, I’ve read that some people with MCI get better, others stay about the same, and the rest go on to develop dementia, but I’ve never read any definitive statistics.  The Mayo Clinic, however, just released a large study of people with MCI.  There were two findings that were significant for me.
  • When the people with MCI returned for their follow-up visit, over a third (38%) of them who had been cognitively impaired were now not impaired.  Their tests were normal.
  • However, the study continued to follow up on that subgroup of now-cognitively-normal people for about five years.  During that time, almost two-thirds (65%) of them had became impaired again, either to MCI or to dementia.

Simply stated, it’s not unusual for cognitively impaired people to become normal again.  Wait a while, however, and the majority of those people will eventually become impaired once more, with either MCI or dementia.

My own situation is not completely comparable to the study subjects. 
  • First, unlike the study subjects who initially reverted to normal, my impairment has not reverted completely since my diagnosis in the fall of 2012; I do, however, feel somewhat less confused. 
  • Second, my normal PET scans demonstrate pretty conclusively that I don’t have Alzheimer’s.  Does that change the odds of my getting worse again?

The research also raises some questions that need to be studied, for instance: 

  • What happens if you follow people for more than five years?  Presumably more will become impaired, but we don’t know.
  • There are many causes of cognitive impairment.  Are there some in which MCI doesn’t revert to normal … or revert back?

So this Mayo Clinic report doesn’t resolve any of the uncertainty about my future.  The chances are good, says the study, that I’ll get worse, but there’s also a chance I won’t.  The reality is that, like anyone else, I don’t know my future. 

The most important thing for me, however, is not to allow my emotional or spiritual balance to yo-yo up and down with each new research fact that bears upon my future.  I certainly am not going to ignore studies like this; I want to be  more informed, and I’m convinced that knowledge is almost always better than ignorance.  In fact, the study helps me a great deal: I know I’m not alone in feeling confused about what’s happening to me. 

Statistics are only one kind of information: they only tell you what the odds are that something will or won’t happen, not what the future holds.  So I’m doing my best to put the statistics in their proper place: helpful but relatively unimportant in how I choose to live.  I won’t ignore facts that concern my future, but I won’t be dominated by them.  Life goes on!

Thursday, February 13, 2014

Loose Ends & a Miracle

Washington DC
In my last post I wrote about the possibilities for error that lie in the fuzzy borders around each of the current diagnostic criteria for Alzheimer’s.  I’d like to tie together some loose ends from that post.

New Diagnostic Criteria Involving PET Scans and Other “Biomarkers”

The diagnostic criteria for Alzheimer’s are becoming more precise and reliable as new laboratory and x-ray tests for physical evidence (called “biomarkers”) become available.  The current definitions (that I examined in the last post) use only the outward symptoms of the disease.  Once biomarkers are added to the diagnostic criteria, the diagnosis becomes more reliable.  The PET brain scans now being evaluated, for instance, can see the amyloid protein deposits in the brain that are directly associated with Alzheimer’s.  Analysis of cerebrospinal fluid can detect the tau protein that is similarly associated with Alzheimer’s.  Much research is still being conducted to determine exactly how to incorporate these biomarkers into the diagnosis.

Some things are already very useful.  If the PET scan for amyloid is negative, for instance, you almost certainly don’t have Alzheimer’s.  (If there is amyloid, it’s not so clear since about 20% of those people apparently do not have Alzheimer’s.)  But the several biomarkers that will soon be available in clinical practice will make the diagnosis of Alzheimer’s much more reliable.
The Trouble with Anecdotes 

My experience of the past sixteen months is a good example of the problems with anecdotal evidence, that is, individual stories that cannot be statistically evaluated.  Over the past year, friends and readers have recommended dozens of different treatments (sometimes even suggesting that doctors or drug companies are hiding them from us).  These sincere recommendations have usually been based on stories of individual patients who took the treatments and got better.  I responded to the comments (here and here) that I probably wouldn’t even look into the suggested treatment because, basically, I trusted medical science to look into any reasonable possibility for cure.  If medical science wasn’t looking into it, I wasn’t going to bother, either.  I keep myself healthy with diet and exercise, but I haven’t taken any special treatments. 

What might have happened if I had taken, say, coconut oil, as a treatment?  How many would interpret my “cure” as “proof” that coconut oil worked.  In reality, it would have been just a coincidence.  The purpose of rigorous scientific testing is to make sure that coincidences, improvements based on the placebo effect, original misdiagnoses (as in my case) or other issues are not involved. 

Isn’t it possible, some of my friends ask, that a new untested treatment works and will later be scientifically justified.  Of course.  I criticize no one who wants to try one of the many suggested treatments.  But I wasn’t personally willing to spend my emotional energy going back and forth trying one or another on the basis of the latest anecdotes.  I know some readers will jump on me for this, but, before you comment, please at least go back and read the two posts (here and here) that I wrote on the subject.

It’s a Miracle Anyway

In spite of all I’ve written above, I still experience this “cure” as a miracle.  It’s not that the natural laws of the universe have been overruled or suspended or that something scientifically impossible has actually happened.  Finding myself free of Alzheimer’s is a miracle because it’s something completely unexpected, something that I would have considered impossible a year ago, something that gives me hope, something that returns my life when it seemed to be disappearing.  Sure, I can go back and explain each step scientifically, as I have over the last several posts.  What has happened broke no laws of science … but it’s nevertheless a miracle.

A New Title for My Blog

Given that I don’t have Alzheimer’s and that my cognitive impairment is not progressing, the title of this blog, “Watching the Lights Go Out,” seems to me a bit inappropriate, so I’m inviting suggestions for a new title (or, perhaps, reasons to keep this title).  My son-in-law suggests “Stop Playing with the Dimmer.”  What are your suggestions?