Beginning

January 15, 2021 will mark the third anniversary of Mr. Dewey’s diagnosis of Atypical Parkinsonism with Lewy Bodies/LBD with AP. That diagnosis occurred about 19 months after we first realized there was something wrong. One can look back, as one does at this time of year, and see there may have been signs earlier in 2016. They were subtle, and may have had nothing to do with LBD. That is what makes a disease such as LBD difficult to diagnose.

On July 18 I left on a 10-day trip to Budapest, acting as a sort of Passepartout for a friend who, realizing the progression of MS would soon make travel almost impossible, decided to embark on one final European trip. Even then, she knew she would need an assistant. I was chosen, and was looking forward to what would be my first (and to date only) trip to Europe.

I had prepared for the trip, packing, buying travel necessities, planning and preparing so my culinarily-challenged sweetie would have meals for home and work, pet care, all the things that one does. I hadn’t been gone for this amount of time in a while, but it was something I had to do frequently the first four years of our married life. It should have been fairly straightforward. But he was anxious at my leaving, and no amount of preparation or reassurance assuaged that anxiety. It got worse and worse, until it was almost unbearable. We spent the three days preceding my departure making trips to Urgent Care, looking for other causes and medications that might help.

I would have backed out of the trip, but I was not paying my way, and neither was my friend. Her husband was financing the excursion for both of us, and if I backed out, she would not be able to go either, and he would have been stuck with the cost of two wasted trips. I felt I had to go on the trip. So I did.

I spent the two days before my trip, not excitedly packing and talking with my husband about all the wonderful things I might encounter and experience, but instead, making arrangements for his care. My wonderful brother made it possible. He and his boys tag-teamed time with John, while another wonderful friend (who was also our Deacon at the time) took time out from her own exciting vacation to make daily calls to John, conversing about daily life and routine, in order to keep his mind occupied and away from anxiety. Our Family Physician was deeply and compassionately involved as well. And I, after spending long, hot days pushing a wheelchair through the cobblestone (and often hilly) streets of Budapest and Prague, would talk to John via the wonders of online video calling.

It seemed that my sweet husband had, inexplicably, developed Separation Anxiety; something more likely to develop in a toddler than a grown man. Yet, it seemed to be the case. I had hoped, upon returning from my trip, that it would abate.

It didn’t. It got worse. It took another 18 months of counseling, testing, medical leaves and research to determine that he did not have SA, nor General Anxiety, at least not as an isolated issue, but worse, as a symptom of Lewy Body Dementia, coupled with Atypical Parkinsonism. Those months were hell for both of us. Amazingly, he was able to continue working into August of 2017, when work colleagues and the company physician realized something other than “just anxiety” was going on.

One hears the term “It takes a village.” It’s true. John’s behavior at home was different from at work in a number of ways. I had not realized how much I did at home than prevented us from seeing the serious cognitive issues he was facing. But his coworkers saw different things than I did. Like how he struggled to perform routine system checks, even with checklists. Or the time he heard the phone ring at the work station and tried to answer his clipboard. They started keeping track, not to cause him trouble, but out of concern. His coworkers and supervisors brought the company physician in, who, along with higher-ups, decided to place John on paid leave, all benefits intact. The doctor and I had a consultation, wherein he shared the notes and observations with me, and suggested a course of action. The support was amazing. The remainder of 2017 was filled with appointments, scans, MRIs, tests, tests, and more tests. We could never have done them all without time off. My gratitude for the company, the union, the HR and med staff, and the compassion and involvement of his coworkers .

LBD, it turns out, is the second most common dementia after Alzheimers’, yet so little known that, while autocomplete takes care of Alzheimers’, autocorrect changes “Lewy” to “Levy.” It’s also the disease Robin Williams had that, albeit in much greater severity than has been elsewhere seen, caused him in a lucid moment to choose a simpler and kinder death.

It’s interesting what one sees in absence, in the space between things. It’s been over four years since this ugly beast reared up on us. We’ve only in the last ten months or so been able to talk openly and matter-of-factly about what is happening to my sweetie. We have been able to get a decent grip on some of the very troublesome aspects of LBD – for now. Getting some control over the anxiety has helped so much, as we work to find joy in Now.

I tell anyone who asks (and fortunately I was able to tell a room filled with 300 or so 1st- and 2nd-year students in the Family Practice program at Quillen Medical School), that controlling the anxiety is the most important aspect of managing LBD. It robs not only the individual of Yesterday and Tomorrow, but loved ones as well. One must do all possible to prevent it from taking Now as well.