Snapshots of Dementia: More Puzzle Pieces

Posted by Marti on November 13, 2020 in Dementia | 6 comments

Clearly life has gotten in the way of blog posts, and that will happen sometimes. But as I return to the blog, I want to dive back into our journey toward diagnosis (I’m really not trying to make it take as long as the actual journey!).  You can find the most recent segment related to diagnosis at this link.

In that previous post, I discussed a visit with the third neurologist we saw in our effort to discover what was going on with Tom’s health/memory/behavior and other problems. By this time, I had made some big decisions, most especially the ones that involved selling our home and moving to be closer to family in the upstate of South Carolina (here, we’re closer to our two oldest daughters, one a few minutes away from us and one in Atlanta, only two hours away). I knew that no matter what the doctors said, something was definitely wrong with Tom. I knew he had lost three jobs in quick succession and that we could no longer allow him to drive. And I knew I couldn’t count on him to lead and provide for our family in the way he had for so long.

But I still needed help to get a diagnosis. I hoped it would be a path toward disability benefits if, as we thought, he could no longer hold down a job. And I especially needed a diagnosis because I hoped doctors could stop or slow down the disease.

This third neurologist was the first one to mention FTD, or frontotemporal degeneration. I’m a writer and editor by profession and also by identity. That means I’m the type of person who will research and read everything I can on any given topic.

I’ve already told you more in these posts about FTD than I knew at that point, now about a year and a half ago. But here are some of the key characteristics that stood out to me in my very early research on the topic:

—FTD typically strikes younger people (the age range for onset is 21-80, but the majority of cases occur between 45 and 64.) Tom had just turned 63, and I’d suspected problems since well before he turned 60.

—FTD is frequently misdiagnosed. Enough said.

—FTD is less common and less known than Alzheimer’s.

—FTD has no known treatment or cure. This site says, “no current treatments stop or slow the progression of the disease.”

And that’s one of the reasons I want to keep writing. As we raise awareness, we can also advocate for research (it’s happening, but slowly) and work toward a brighter future for others faced with this deadly diagnosis.

I also learned that FTD has some subtypes including corticobasal syndrome, which affects movement; primary progressive aphasia (PPA), which results in the gradual loss of the ability to speak, read, write and understand speech; and the behavioral variant, which is the type we believe Tom has. There can also be a genetic connection between FTD and amyotrophic lateral sclerois (ALS). Each type is distinct, but as the disease progresses, the symptoms tend to merge. And yes, I do see this merging happening with Tom.

Reading about the behavioral variant type was shocking and, in a strange way, affirming. These symptoms seemed nearly a perfect match for what we’d seen in Tom (I’ve pulled this next segment directly from this link, where you’ll find even more detail):

—Disinhibition: A loss or lack of restraint based on social norms, leading to inappropriate behavior and impulsivity.

—Apathy: Indifference or lack of interest in previously meaningful activities.

—Emotional  Blunting: Loss of warmth, empathy, or concern for others.

—Compulsive or Ritualistic Behaviors: Single behaviors or routines that are performed over and over.

—Changes in Eating Habit or Diet: Excessive, compulsive or inappropriate eating and drinking, or other pronounced changes in dietary preferences.

—Deficits in Executive Function: Poor decision-making, judgment, problem-solving and organizational skills.

—Lack of Insight: Failure to recognize changes in behavior or exhibit awareness of effects of behavior on others.

I sat back and stared at this list, feeling both relief and amazement. There was a disease that caused the type of drastic changes we’d seen? And it was connected to a deficit in a particular area of his brain?

At long last, things were starting to make sense. We didn’t have all of the puzzle pieces—but I couldn’t help but believe we had only a few more steps to go to find them all.

I just didn’t know quite how far those steps might take us, or where we might end up.

Do you have a friend or loved one with similar symptoms to any I’ve mentioned? I had never seen these descriptions, so I didn’t suspect so many of them were connected to the same problem. Again, I encourage you to seek help from a medical professional and to do more than just accept a diagnosis that you find unsatisfactory or insufficient.

I’d love to read your comments below. Your story matters, and so do you.