Snapshots of Dementia: Whole Lotta Shakin’ Going On

Posted by Marti on July 17, 2020 in Dementia | 4 comments

“Whatever you do, if they take you out to lunch, don’t hold your drink like that.”

Two close friends gave Tom this advice as they sat at one of our favorite Charleston restaurants (we lived on one of Charleston’s barrier islands before we moved to Florida). The year was 2007, and these two prominent businessmen were giving him tips as he prepared to interview for a ministry job in the Orlando area.

But what difference would the way he held his drink make? When he told me about their comment, I knew exactly what they meant.

Tom has what doctors call an “essential tremor” in his right hand. I don’t remember that he had it when we first met more than 40 years ago, but I do know he’s had it for a long time. This genetic condition causes involuntary shaking and can occur almost anywhere in the body, but most often in the hands, especially when performing activities such as tying shoes or drinking from a glass. The Mayo Clinic says it “is usually not a dangerous condition, but it typically worsens over time and can be severe in some people.”

Tom’s sweet tea, in the grand old Southern tradition, came in a heavy glass. His friends noticed his hand shaking and didn’t want it to signal any sort of problem.

I’m not sure if he remembered not to hold a glass during the interview process, but he did get the job, and our family moved to Florida that July.

I bring up the tremor because it was yet another symptom I questioned when I became concerned about other issues and began our quest for a diagnosis. Tom’s first neurologist was the one who told me it was called an essential tremor, and that it was “nothing to be concerned about; lots of people have them.”

At his casual words, I heaved an inner sigh. I had plenty of other thins to be concerned about. But of course back then, I didn’t realize how many.

Only a few months after that visit, as I sat in church with Tom one summer Sunday, he put his arm around me, and I noticed it was shaking violently. His tremor, I thought. It seems so much worse.

But then I realized something that concerned me even more: It was the wrong arm.

I didn’t realize it then, but Tom was experiencing great stress. Our pastor told me during my lifechanging pre-Christmas visit that no matter what they discussed before the service or how similar the order of worship was each week, one of the many things Tom couldn’t seem to remember was when he should return to the platform to lead the closing hymn. He watched intently every Sunday, fearful of missing his cue. I’m sure he experienced other kinds of stress, but that Sunday, it all found expression in his trembling left arm.

After that, I started paying more attention to his tremor. It had definitely gotten worse and had moved into both hands and arms, not just one. He laughed it off as “something I’ve always had; I don’t even know when it started,” but I viewed it as one more sign and symptom: Something was wrong with my husband.

I shared this change with the neurologist at our second visit in 2017, and he still seemed unconcerned. I had friends with Parkinson’s disease and wondered about a potential connection (there are several differences in the two tremors; see here for more information). At that point, I dropped the subject.

But I watched. And now that I had moved into active rather than passive mode, I began researching Tom’s symptoms. Did he have Parkinson’s disease? I knew it must be something more than that because he had so many other symptoms too. I thought he might have Lewy Body Dementia, which has connections to Parkinson’s. I’d only recently heard of it, but this disease is the second most common type of progressive dementia after Alzheimer’s disease. When Tom moved across the kitchen one day and I realized he was dragging his feet (another sign of a Parkinson’s-related disorder), my wondering only increased.

But I did more than wonder. I talked to some friends and scheduled an appointment for Tom with a recommended neurologist.

Maybe this time, we’d get some answers.

Maybe this time, we’d get some help.

As we waited for the appointment, I kept asking God for both.

Does someone you know or love have a tremor? Do you know its source or cause? Essential tremors are common, but it’s wise to consult with a doctor about any changes you see. Feel free to share your experiences here. Your story matters. And so do you and your loved one.