Now It Begins

Washington DC

I have been diagnosed with a progressive “mild cognitive impairment,” almost certainly Alzheimer’s disease.  The neurologist told me the diagnosis last September, but I’ve waited  to begin this blog until now when  my symptoms are becoming noticeable to others. (You can find all the previous posts in the blog’s archives [bottom left] or by going to my website where I’ll keep all the posts in a few documents for those who want to read the whole story in chronological order.

Actually, I’d been noticing symptoms for a while but was still surprised by my doctor’s diagnosis.  Over the past several years, my memory has significantly declined.   This is a common complaint for people as they age.  For 20 years before he died, for instance, almost every time we visited, my father asked again for reassurance that he didn’t have Alzheimer’s  His memory loss, like many other older people’s, was mostly for names and faces.  I’ve always had that kind of poor memory, but I began losing memory in other areas as well.  Two years ago, an entire trip to a rural area southern Virginia disappeared from my memory.  I drove down to visit my friend Jens Soering in the prison to which he had previously been moved.  I could have sworn I was going down for the first time.  In fact, I’d been there before several months earlier.

I chalked it up to a single bizarre experience that would probably not mean much to a doctor, so I didn’t do anything except tell the story to friends.

Some months later, I couldn’t recreate a computer spreadsheet formula that I’d written several years earlier.  In fact, when I went back and examined the formula from an old spreadsheet, I couldn’t even understand what I’d done.  Such calculation difficulties persisted.  I went to a neurologist in the fall of 2011 for testing and he said that I did have a cognitive impairment but that it wasn’t severe and the relevant point was whether it was progressive.  I returned last fall (2012) and, yes, the impairment had progressed.  There aren’t too many likely candidates for causes for progressive cognitive impairment.  The neurologist performed tests for them: they were all negative.  There is no certain test for Alzheimer’s except to rule out these other candidates, so the overwhelming likelihood is that I have early Alzheimer’s disease.

Since last fall, the disease has progressed.  My memory is much less reliable.  I’ve had trouble finding words, especially in Finnish as my wife Marja and I try to converse but also quite noticeably in English.  Both my daughters, Laurel and Karin, recognized in retrospect that it took me longer to do certain tasks.  That slowness in figuring things has gotten worse, too.  While I can still eventually do most computer tasks, they can take a long time, and I can get confused easily.  I’ve even had two experiences of being in locations that should have been quite familiar but, in fact, I didn’t really know where I was or how to get where I was going. 

I’ve been apathetic about writing and about my website these last several years.  I’m somewhat less interested in politics; for example, I couldn’t sit through the presidential debates last fall.  (Some of you may feel that the only mentally healthy response to the debates is to turn them off, but it’s never been true for this political junkie.)  Perhaps I’m just looking for an excuse, but I’d like to believe that this disease is at least predominantly responsible. 

So, while there is always a chance that it’s something else, my neurologist and I are pretty certain that it’s Alzheimer’s.    So far, the symptoms have been limited.  I can still write well, although you may have noticed that my essays have been less frequent lately.  When I type, I frequently leave out words and phrases (which I hope I’ll edit out before I actually put my posts up).  I’m still teaching in small groups, still doing the books for my church, still mentoring some others. Up till now, I’ve noticed my mistakes well before others do.  My judgment seems unimpaired.  My life goes on.

It seems paradoxical, but Marja and I are actually doing quite well.  In fact, I’ve noticed some positive changes in my ways of thinking and acting.  I’m more emotionally open.  I’m less insistent on maintaining my image as prophetic voice or incisive writer.  I don’t need to prove myself with new accomplishments.  For the first time, Marja and I have allowed ourselves to look back on our lives with satisfaction and gratitude.  I’m more vulnerable to other people and have been experiencing an extraordinary closeness to some people that I would never have thought possible.  While it seems crazy to say it, so far my life has been better … happier … than before this disease.  I have no illusion about what’s coming, but, up until now, it’s been good. 

Garrison Keillor said recently, “Nothing bad ever happens to writers; it’s all material.”  So, at least for a time, this Alzheimer’s disease will become material for my website and for this blog.  I want to write about what Alzheimer’s is like from the inside.  What is the experience of losing one’s mind?  Do I still experience myself as the same “self”?  Obviously, I don’t know how long I can do this, although my good friend Carol Marsh has volunteered to keep it going with interviews when I can no longer write.  We’ll have to see.   

I had a number of scenarios for my death.  This wasn’t one of them.  But now, I have pictures in my mind of lying drugged and incontinent in some nursing home.  I don’t want friends and family to remember me as that old guy babbling on the couch.  I’m afraid of the uncontrollable rages that sometimes accompany this disease.  Mostly, I think, I’m afraid of abandonment as I become one who can’t hold up his part of the conversation.  I’m afraid that--except for Marja--my family or even very close friends will abandon me (even though I know intellectually that these are irrational thoughts), but it’s not paranoia to think that the quality of relationship will isolate me. 

But it’s not only fear that we have about Alzheimer’s.  It’s also embarrassment.  What do we say to the guy has just repeated himself for the third time in five minutes?  Several years ago our community  invited to Washington a writer whose books had brought great change to our lives.   But he had Alzheimer’s that had progressed significantly.  I’m not proud to say that I had no use for him.  Why had we invited a man who could hardly follow a conversation?  (After my experience so far, I suspect he did understand at a non-cognitive level and honoring him was well worth our effort.)

So part of my reason for this blog is to address that fear and embarrassment.  I’ve been frank and transparent with my family and my community because I want us to work together to teach each other about this disease and how to respond to it.  I want to discover what friends (or even just acquaintances) can do to understand this illness and not have to abandon me.  Perhaps I can take some fear away.  .   

I’ve been writing “posts” since September but haven’t wanted to publish them until now.  I’m not sure how many people will want to go back and read those many posts, but I think that just putting them here on a blog will almost certainly bury them too deeply and discourage anyone from reading the whole story.  So, for those who do want to go back, I’ve compiled them in chronological order and put them on my website.  I will continue to do that as the archives expand.  I’ve also written a short autobiography that, I hope, will give you the chance to know who I was and, therefore, what I’ve lost. 

These have actually been wonderful months!  I want to follow it out.  I hope some of you will want to join me.

Research

Washington DC

I received a call from a research department at Georgetown University that is studying a treatment for Alzheimer’s.  The hope for the drug is that it will actually change the progression of the disease rather than just improve cognitive function while the pathology of the disease progresses undisturbed.  I told my neurologist several weeks ago that I’d like to be part of such a research project, he informed the people, and a nurse at Georgetown telephoned me.  I’ve read the particular research protocol.  While it’s intense, it’s something I’d very much like to take part in.

The truth is that I only pursued the research possibility because my sisters pushed me into it.  But now I’m very interested in the possibility.  It may be difficult to qualify for and only a few hundred people from around the country will be invited in.  There will actually be four or five interviews and SOME testing to determine eligibility.  One of the tests will be a Positive Emission Tomography (PET) scan that can further confirm my diagnosis and lay to rest any lingering doubts.  My neurologist offered me the test several months ago, but I declined for cost reasons; now it will be part of the protocol.

As a physician I always felt that research protocols were the best way to get detailed care from doctors with sub-specialty interest, and I always recommended them to appropriate patients.  Often, there won’t be any benefit from the medication being studied, but the process itself leads to deeper understanding of the disease, attention to minor symptoms, and a sense that “everything is being done.”  So my previous reluctance doesn’t really make any sense.  Perhaps it was part of an unconscious need to slow down the acclimation process and better integrate Alzheimer’s into my self image.

As scheduled, I spoke to about 40 Georgetown medical students this morning about inner-city poverty.  I was nervous.  I’m very familiar with the basic outline, but I needed to change the introduction.  In rehearsing it before my talk, I realized that I could not speak fluently about something I wasn’t intimately familiar with, so I had almost to memorize the introduction.  It went well.  Speaking with young people is one of my favorite things to do.  The students were attentive, and my presentation was fairly fluent, although my memory for something quite familiar failed me at one point and I had frequent trouble word-finding. 

Afterwards, I spoke with the professor.  She apparently hadn’t noticed anything wrong with the presentation, which relieved me.  I then told her about my Alzheimer’s, and asked whether there was any possibility of breaking into the medical school to share this process with doctors-in-training.  She seemed positive and promised to talk with the relevant professor within a day or two.

I’m all set to announce my diagnosis to the world.  All my previous posts are online both on my website and on my blog.

Little Things

Washington  DC

A Presbyterian pastor visiting yesterday from New Jersey introduced himself to me in church.  He seemed to think we’d met before.  I shrugged and probably looked at him pretty blankly, so he started describing several occasions where we’d seen each other.  He’d come to Eighth Day a number of years ago, we’d talked, I’d invited him to the house, we took a walk, etc etc.  In fact, he talked for several minutes about our previous conversations and how important they’d been to him.  I couldn’t remember a single bit of it.  So I'm embarrassed that I don't remember a thing about this man who knows me so well; he's embarrassed to think that the conversations meant so little to me.  I considered cutting through the bilateral embarrassment by mentioning the Alzheimer’s, but that would have trapped us both in one of those too-much-information moments with 15 seconds left.  In this case, embarrassment seemed the best choice.

This morning I poured cold milk into a cup with the intention of putting the milk carton back into the refrigerator as soon as I put the cup into the microwave to heat.  But I forgot to put the carton back and only noticed it standing there on the counter when I returned to the microwave a minute later.  Before taking the cup out of the microwave, I made a definite mental note to return the carton of milk to the refrigerator as soon as I got my cup.  It was only a few minutes later as I was returning with my milk to my room that I remembered the milk carton. 

Twice I forgot the very same intention seconds after I’d made it, even after making a conscious mental note of the intention. 

Such lapses may not seem like much but events like this happen over and over. 

Accommodation

Washington

I guess I’m accommodating to the diagnosis.  I go through days or even weeks when I notice no symptoms … at least no new symptoms.  I suppose I’m getting used to picking up a new magazine and reading half way through an article only to realize that I’ve not only read the magazine previously but that I also read this same article just a few days ago.  Or blanking on a word in every conversation.  Or spending five minutes looking through our tiny apartment for my hat or shoes or backpack several times a day.  I am used to it and it doesn’t feel abnormal.  I catch myself thinking what I’m going to say to friends or those who read my blog if this whole thing turns out to be a false alarm.

I shouldn’t blame Marja, then, for flipping back and forth in how she thinks of me, too,  one night concerned that I’ve just fallen for a telephone scam, the next cautioning me about publishing this blog because it might be something else, not Alzheimer's.  We both go back and forth.

I continue to be amazed at the wonderful conversations I’m having with people.  I’ve had good conversations with people before this disease, of course, but it now happens repeatedly.  My second discussion class with the interns at Joseph’s House was very rewarding.  What a gift!

A Life Changes

Washington DC

I’ve had a disquieting, indefinable sense of things being not quite right.  It’s part apathy, part a mental fuzziness, part anxiety, part a sense that I’ve not been doing my best, part a loss of confidence.  On the one hand, I’ve accepted one, possibly two new engagements to speak with students and I think my class this afternoon with the interns will go well.  At the same time I’m anxious about both of those things.  I feel like I’m wasting time, yet I’m not sure how I could have been more efficient.

Perhaps it’s mostly loss of confidence.  I want to update both my own website and Eighth Day’s (which I manage), yet I’m a little scared that I won’t be able to handle the update and will have wasted the $1000 that it will probably cost.  I’m not sure; I can’t define this feeling well.

I want to spend a lot more time with my family over the next couple of years, both my children and my siblings.  Because of the long distances involved, it will mean fairly long absences from Eighth Day, and I’m wondering about what that will mean for the level of my participation in the community.

If I think of it, taking time with family really isn’t negotiable so the real question is which church responsibilities to let go.  Recently, as we talked during our weekly coffee, Fred affirmed the priority of visiting family, which is certainly my desire. 

My life has changed dramatically; I and others will have to expect significant changes in what I do with the time that I have left.

Fred and I also talked about making good use of the time that I have here.  He said that part of his theology is that “nothing is wasted.”  What I understand from what he said is that any experience can become, in Garrison Keillor’s word, “material.”  That is, I can take whatever I’ve been given and use it for good in the world.  I’m certainly hoping that I can do that.  I’m hoping, for instance, that my experience with this disease can give young people a different perspective on this aspect of aging.  They don’t, of course, think much of their own dying and I would imagine that Alzheimer’s is at the top of their list of horrible ways to die.  So if the young people in my classes, at church, and perhaps at medical schools or colleges, will allow me to enter their lives a little bit, I might be able to do some good.

Vulnerablity (2)

Washington DC

In my previous thinking and writing about the vulnerability of the poor, I’ve emphasized that we people of privilege can never really give our privilege away.  We can take on voluntary poverty by moving into the ghetto, or sharing the poverty of a remote African village, but our privilege always goes with us.  We have our education, we have our vocabulary that opens doors, or we have family that in a pinch will help out.  At the very least we know what privilege is and in which direction it lies.  Usually, when I’ve talked or written about this, I’ve added the caveat, “… unless we develop a mental illness that takes our privilege away.”  Alzheimer’s will, in this sense, eventually take my privilege away.

Even with this disease, of course, I will never really experience the vulnerability of the poor and oppressed, of say an oppressed person who also has Alzheimer’s. But this will get me closer.  Similar to the worst time of my depression when I had to face the possibility that I would never be well, the Alzheimer’s means that I will be more and more vulnerable to the needs and desires of others.  If am not able to participate in a conversation (or if other people think that I can’t), then I will be excluded.  At some point I will be dependent on others to get me what I want or need.  I will become susceptible to scams or frauds. 

I don’t feel that vulnerability yet, but it is certainly coming.  It will take a certain spiritual strength to exist in that vulnerable space.  But what kind of spiritual strength will I have as my cognitive impairment worsens?