A Longer Life

Washington DC

Several people with early Alzheimer’s disease have left comments on this blog.  They’ve known their diagnosis for several years and their symptoms often go back a year or two before their diagnosis.  They’re all still able to use the computer, obviously, and, according to their reports, are functioning pretty well in day-to-day life. I’m beginning to realize that this early phase of the disease can go on for quite a while.   

Jim Landry, for instance, lives in nearby Maryland, so we got together a couple of days ago to meet and compare stories.  He has known of his diagnosis for over two years.  We talked for two hours, and he told me about a number of examples of his cognitive impairment, for instance, the inability to calculate even fairly simple arithmetic, difficulty in word finding, and his reluctance to drive anywhere except very locally.  (He gets confused too easily if the traffic is at all heavy).  I was, of course, looking for impairments as we talked, but the only one I actually noticed was the trouble with word-finding.  He was skilled enough at substituting other words, however, that I wouldn’t have noticed unless I’d been specifically listening for it.  Even paying attention, I noticed only that his substitutions were not always exact synonyms for the words he was looking for.  Ordinarily no one would notice his impairment.

So in most situations, he, like me, can “pass” in day-to-day interactions with other people.  He has been completely “out” (the vocabulary around homosexuality is quite intentional) about his diagnosis and can’t imagine doing it any other way.  He’s found no reason to regret his openness.  He did have to leave his professional job because of his difficulties with memory, but that was before his actual diagnosis; his job loss was from his impairment not from his going public.    

A person who comments here frequently, “meganthemegan” reports that she gets lost quite easily but is quite comfortable asking people for help; she has trouble with social etiquette (eg using the F-word inappropriately); she can’t do basic arithmetic, and so on.  But she’s also developed a number of coping mechanisms that help her get about: becoming a “neat freak” so she can find things, writing very explicit notes to remember things, recording voice notes on her smartphone, and so on.  (The voice notes have been a wonderful suggestion that I’ve taken up; I’m not fast enough on the smartphone to write things down in a reasonable amount of time, but when something comes up in a normal conversation that I need to remember, I can dictate it pretty quickly.  When I get home, I process my notes.)

Her comments to this blog are written with no evidence of cognitive impairment.  She obviously gets around in her environment and can relate well to her friends.  By her own report, she’s impaired but she’s fully with us.  She writes, "

I've given up on names and math and being a well-behaved woman. I have become better at rolling my eyes and shrugging my shoulders while smiling.  …I have also experienced the incredible fullness of “present moments” -- love and fear, expansion and contraction. I am reminded of Rilke's words:

“Let everything happen to you
Beauty and terror
Just keep going
No feeling is final”

I’m writing about these two people in part because theirs are just beautiful stories.  But they are also an indication that “real life” can go on for a long time after diagnosis.  I talked on Skype to a guy who’s had Alzheimer’s for ten years and I couldn’t detect any impairment.  I myself have declined so gradually since my diagnosis last September that daily functioning seems even to me almost normal.  

The implication is that the progression of my Alzheimer’s will probably be slower than I’d originally thought: I may be around for a good long time.

So that’s good! 

Initially, this realization brought up the question: So now what do I do with the rest of my life?  I’ve gotten to thinking of myself as a “professional Alzheimer’s patient” (with this blog, media coverage, speeches, and so on).  I’ve been subconsciously assuming that that role and my calling to “out” Alzheimer’s would occupy the rest of my life, and that would be enough!  But now there’s much more life to occupy. 

But the question of what I’ll do is really unnecessary.  This is a waiting period, and the future will show itself of its own accord.  (One of the joys of this disease, actually, has been much freedom from worrying about what I “should” do.)  I have the diagnosis; I know the basic outline of what’s coming.  I have the truly important things—relationships, community, love, meaning, an appreciation of the world’s beauty—and they will remain.  I’ve entered into a strange world as an increasingly mentally challenged person.  Apparently it’s going to drag out longer than I thought, but I’m still very curious.  It’s quite a journey!

Again, I’d be greatly interested in hearing from you with a relatively early diagnosis.  If you ever think about it, what do you envision for the next few years?