Accepting Alzheimer’s, One Lost Memory at a Time


I’ve also been fortunate enough to be able to keep working. The small not-for-profit where I work allowed me to step down as director and keep a part-time leadership role. I can’t imagine my life without the structure and purpose of work.

I’ve also managed to keep up an eight-year exercise streak. From CrossFit to a slow ride on an exercise bike and everything in between, I’ve managed to do some form of exercise every day to get my blood pumping. And while some folks might not consider that to be all that much fun, I actually (sort of) enjoy it. And I believe, and research suggests, that it has helped keep the Alzheimer’s monster at bay.

Speaking of research, I’ve been participating in a clinical trial for an experimental drug, Biogen’s aducanumab. During the 16-month “blind” phase, I could have received the placebo or the actual drug. Now I am participating in an open phase where I am guaranteed to be receiving the test drug. Happily, I’ve never had a negative reaction to the therapy, and I’ve met many wonderful people working hard to find a treatment for Alzheimer’s.

The most noticeable Alzheimer’s symptom I’ve experienced is an ongoing battle to find words. I’ll be chatting and suddenly hit a blank. I feel as though I’ve stumbled into a void and typically resort to rudimentary sign language to try to express myself. Sometimes, after struggling for 30 seconds or so, the word will come to me. Other times, it’s gone and whomever I’m talking with gets to play a guessing game about what I want to say, which can leave me in tears of frustration.

In fact, tears seem to be one of the most common side effects of Alzheimer’s. One night, sitting at a restaurant with my family, I found myself getting tired and suddenly started crying. I couldn’t stop and with an embarrassed wave, Tim and I left. I didn’t stop crying until we neared our house almost 30 minutes later.

It had been a long day, but the tears made little sense. Another time, I could feel my emotions slipping after a tense meeting at work. As soon as the office emptied, I started sobbing.

Interestingly, I never was much of a crier, but now I take pills for anxiety, which may be to blame for my out-of-control tear ducts.

Source : Nytimes