February 4, 2016

"I'm Grateful" -- David Hilfiker's Blog Post Today Speaks for Me, Too

On January 30, 2013, David Hilficker launched a blog  -- "Watching the Lights Go Out" -- with this opening sentence:
I have been diagnosed with a progressive "mild cognitive impairment," almost certainly Alzheimer’s disease.
David explained that he was "writing this blog to dispel some of the fear and embarrassment that surrounds Alzheimer's and other cognitive impairments."

His blog quickly became one of my favorites. Beautifully written, it gave an excellent first-hand account of his day-to-day life with cognitive decline. Reading it, I often felt more uplifted than depressed as David described his journey not as the end of life, but rather as another phase of life with opportunities for growth, learning, and relationships.

Then in October, 2014, David wrote: "The Last Post....(?)." That piece was not, as I initially feared, a post to report that his lights were about to go out. Instead, David explained that he was suspending the blog after learning that he did not, in fact, have Alzheimer’s disease. His cognitive decline had stabilized.

Fortunately, a reader persuaded David to let us know how things are going. I won't try to summarize his post (below); it should be read in full. Titled "I'm Grateful," his post resonated with me because I've had a similar experience.

Like David, I have worried about a future that might very well include dementia. Statistics suggest that 50-80% of people with Parkinson's develop some form of dementia. I was convinced that the cognitive declines I was experiencing signaled that dementia was just around the corner, if not already here.

In my blizzard update last week, I reported on the memory test I took. Afterward, when the doctor told me she didn't see any signs of dementia now or in my immediate future, I was surprised.

Here's David's post today. I've included his brief bio at the end.
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I'm Grateful

stopped writing this blog in October 2014 because I'd discovered that I did not, in fact, have Alzheimer’s disease and because the decline in my cognitive abilities had stabilized. Several weeks ago, however, a reader emailed me to “urge [me] to do a 'follow up' post to let us all know how things are after this passage of time." It seems like a good idea.

I'm very grateful to be able to say that the gradual loss of my cognitive status that precipitated this blog three years ago has leveled out. Further medical tests indicated I did not have Alzheimer's disease. Cognitively I've been stable now for almost two years and over the past six months certain abilities have actually improved: I'm able to concentrate a bit more, and I don't get confused as much as I did. I still have significant deficits in memory, in word-finding, in organizing my thoughts, in multi-step cognitive processing, and in certain kinds of computation. Aside from my memory decline and my difficulty word-finding, however, most people don't recognize anything wrong or they think that it's just a result of aging. I believe it has to be more than aging, but whether it is or not is no longer important to me.

I'm not much embarrassed when I forget someone's name or even that we just met last week. Most everyone I see day-to-day knows about the loss, so I don't have to explain much. Generally, when I meet someone new, I'll tell them in advance that I'm terrible with names and faces and I'll probably forget who they are the next time. Usually, I don't have to go into detail.

One aspect of the decline that does bother me is that complicated discussions are almost impossible now. I can't remember enough to follow the ideas. My college-professor son-in-law, for instance, loves to get into abstract discussions about almost anything, and I just can't keep up anymore. We spent Christmas in Philadelphia with my daughter and her family. I'd recently read the book Capital (by Thomas Pinketty) and was excited about it, for it helped me to understand some of the important issues we're facing in our capitalist economic system. My son-in-law hadn't read it, but he'd read some reviews. When I started to tell him about the book, I could convey only my emotional excitement, not the particulars of what had excited me. As college professors are wont to do, I suppose, he immediately critiqued the ideas in the book, and I found myself almost helpless, frustrated, and irritated. (I love my son-in-law and don't want anything to stand between us, so I suppose I need to talk with him about it … or maybe he'll read this post.)

On the other hand, my intellectual functioning has improved enough that I've dared to go back to teaching some less complicated subjects. Because of my remaining confusion, I've decided to require my students to bear more responsibility for the class (making me more of a coordinator). This is probably better teaching than my previous lecturing, anyway, so I'm enjoying the teaching more than before.

What is much more important to me, though, is that many of the gifts I received from my time with Alzheimer's (here and many other posts in the blog, which you can find by entering the word "joy" into the site's search engine) have, to some degree, remained with me, and my life is more joyous because of it. I'm less uptight about getting things done and am fairly (although not completely) comfortable taking on fewer responsibilities. I'm easier to get along with (people tell me), and I have more friends. I can rely on others, where before I would have insisted on being more independent. None of this is perfect, of course; there's plenty of backsliding, but I am so much happier than before.  It's a great gift.

Perhaps the biggest difference from several years ago is that I've been given back a future that I thought had been taken away. I had been counting on only a few years of full intellectual life remaining. (That was a certain kind of gift, too; I could let responsibility for long-term projects slide without guilt.) But now my future offers the possibility of more. I am able to take some of those responsibilities back. Despite my history of depression and a certain irritating realism, I have always been an optimist at heart. So I'm eager to see how it all works out. Even considering the broken state of our politics, even considering the state of racism and global climate change, I still look forward to experiencing this strange future that is coming.

So … I'm grateful. I can't ask for more.

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And here's the bio from David's blog:

I am a 68-year-old retired physician and live with my wife in the nation's capital. I practiced for seven years in an isolated rural area and then for ten years in an inner-city neighborhood. In 1990 we founded Joseph's House, a home for homeless people with AIDS and cancer. I have continued to write, teach and lecture about poverty, politics and other issues. I am writing this blog to dispel some of the fear and embarrassment that surrounds Alzheimer's and other cognitive impairments.

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