Not long after I went public with my news about Alzheimer’s disease in the summer of 2015, I was contacted via Facebook by Steve DeWitt, whom I played high school football with in the late seventies. I didn’t know Steve well—he was a year ahead of me among a student body of well over 1,000 students. But that we both ended up with Alzheimer’s in our early fifties seemed more than just a coincidence. Neither Steve nor I were aware of any family members who developed the disease at such a young age. This made each of us suspect that head trauma, perhaps caused by playing tackle football for many years when concussions weren’t as well understood as they are now. Several weeks later I posted a piece in which I surmised that my genes had nothing to with my dementia, but head trauma did.
This week I once again interviewed Steve, this time to exchange notes about the disease we share. Both of us reported a decline in our spelling skills, which should be no great surprise. Spelling draws on short-term memory, and short-term memory is the first function that the disease attacks. And English, unlike German, the only other language I am familiar with, is somewhat of a mishmash, with many French-derived words that are tricky to spell.
Steve appears to be a bit farther down the long road of Alzheimer’s than I, which may be attributed to his having developed the disease a year or two before I did. One thing that surprised me was Steve’s description of “phantoms.” At first I thought he was referring to brief hallucinations, which, I have been told, can be a common symptom in the disease’s middle stage. But Steve’s explanation is more complex.
Phantom pain, according to Steve, “feels like a red-hot needle going through me, though they last just a few seconds. They seem to happen in targeted areas, but the areas change over time. Previously, I felt them in my leg or foot. Right now they keep attacking my left eyeball. Sometimes I get no phantom pains, some days I get a handful of then.”
Before Steve started experiencing the symptoms of Alzheimer’s, he was an acclaimed home builder, with one of the home’s being featured in Architectural Digest. For Steve, as for many other people who were respected professionals before they developed Alzheimer’s, it took some time for Steve to recognize that he could no longer do his job. But he still works in his wood shop in his home. He did have a minor accident recently, but in Steve’s calculus, continuing with his craft of carpentry is worth it. It reminds him that in at least one realm, he is still quite able.
For many years, Steve and his wife Patricia have been empty-nesters, and Patricia works as a bookkeeper in a law firm in San Francisco. Patricia gets up around 6 a.m. on workdays, and at that early hour the couple shares conversation and coffee before Patricia leaves for work. Nearby is a young family, and some days, Steve plays wiffle ball or other games with the kids. Steve and Patricia have two small dogs, to the delight of the neighbors. And in Northern California’s temperate climate, such games can be played year round. Steve, like me, is an avid reader, but recently Steve has found reading more challenging. Sooner or later, that will be the case with me as well. Like many people with Alzheimer’s, Steve attends a support group, which he describes as helpful. But until recently, he had something a good deal better: An excellent relationship with his neurologist , Dr. Keith Vossel, at the University of California at San Francisco. But Vossel has since moved on. I myself interviewed Dr. Vossel last year, and I can see why Steve would miss this particular doctor. He has the rare skill of conveying matters of the brain in an accessible fashion, without a trace of condescension.
The last question I asked Steve was this: “Do you ever feel depressed about having Alzheimer’s, rather than just wishing you didn’t have the disease?” This was his response: “I decided I didn’t want to let Alzheimer’s get me down anymore than it has. I refuse to let it. I refuse Alzheimer’s to beat me, even though I know Alzheimer’s will win this fight. But I will fight to the end.”