Snapshots of Dementia: Roller Coaster Ride

Posted by Marti on April 29, 2022 in Alzheimer's Disease, Dementia | 2 comments

Twists. Turns. Slow, then fast. Up, up, up—then plunging down. And sometimes, what seems like a complete reversal. That describes not only a roller coaster ride but our journey to and through diagnoses (intentional plural). 

In this post from a few weeks ago, I shared how after a long wait, Tom was finally approved for disability payments through the Social Security Administration. I no longer had to jump through hoop after hoop to get doctors to agree that something was wrong with him and/or agree on a diagnosis, which had previously wavered between frontotemporal degeneration, behavioral variant, and young-onset Alzheimer’s Disease (“young” onset means symptoms develop before age 65, and Tom had symptoms well before age 60, which is when I finally convinced him to see a neurologist).  

As it turns out, we weren’t done with the diagnosis process after all. As I also mentioned in that post, we had one unsatisfactory visit to a neurologist in our new home state of South Carolina (where we moved in late 2019; we had seen a total of four neurologists in Florida). Once the perceived urgency of diagnosis was over, I didn’t want to go back to that doctor. I took the advice of a local friend and called the Brain Health Center at Emory University in Atlanta. We had tried to get Tom accepted there once before, but at the time, they wouldn’t take patients who lived more than an hour from the hospital (we live two hours away). 

Both the pandemic and the fact that Tom now qualified for Medicare helped us. When I called in the spring of 2021, the screener said she would call me back “in a day or two” if he qualified. I got a call back that same afternoon.  

A few weeks later, we met with Tom’s new neurologist for the first time—via Zoom as we sat parked outside a restaurant in Georgia (we had to be physically in the state because of medical licensing requirements). They had no in-person appointments, but I filled out multiple questionnaires ahead of time. The neurologist listened to both of us (although Tom stopped participating early on), asked insightful questions, and wanted to hear various details of Tom’s health. I mentioned that although many of his behaviors/symptoms were consistent with FTD, his early memory problems seemed to point more toward Alzheimer’s, and he had received both diagnoses. 

To firm up the diagnosis, this neurologist recommended a lumbar puncture and an MRI (his third since 2017). We had declined a LP a few years prior, concerned about putting Tom through a stressful procedure, but this time, I said yes. Since I had gone to the trouble of taking him out of state to a top-rated brain clinic, I felt I should follow the neurologist’s recommendations, and he felt these tests were necessary to provide the best treatment for Tom going forward. We couldn’t get an appointment till November, but he could have both procedures done the same day. 

What I didn’t know in June was that I would end up having shoulder surgery in early November, so our oldest daughter drove Tom to his appointments and accompanied him to both the tests. In her characteristic style, she also made sure he had a fun day that included resting at her sister’s apartment (very close to Emory) and a Costco visit (his choice) along with dinner and a movie. These loving family additions to caregiving only deepen my commitment to keep Tom at home as long as I can. 

For anyone who (like us) has questions: The procedure for a LP has improved through the years. Tom experienced little to no pain and no problems afterward; he (and our daughter) was especially impressed by the neurologist’s gentle care throughout. The most painful part was the numbing prior to the procedure rather than the procedure itself—and even that wasn’t terrible. Tom is not claustrophobic, so the MRI wasn’t terrible either. Ever the musician, he was more concerned about the “awful” music the technicians played than about the banging of the MRI machine itself. 

We received the results in our next appointment, again via Zoom, in late December. By this time, more places were open, so we visited a Georgia library and used one of their private rooms for the Zoom call. Shoutout to the Commerce, Georgia, librarian who responded to my online request and reassured me that even out-of-state visitors were welcome to use their WiFi! I appreciated the privacy of a library room rather than having to use a restaurant or other public place. 

In brief: Tom’s LP showed that he met the criteria for Alzheimer’s disease. His MRI showed a loss of brain tissue in both the temporal and parietal lobes, the latter of which is more commonly affected in AD than FTD. He may have other pathologies, meaning a potential mixed dementia, and his behaviors continue to resemble those of a patient with FTD, behavioral type. So this neurologist has diagnosed him with young-onset Alzheimer’s Disease, Frontal Variant, which he says can almost perfectly mimic FTD.  

Where does that leave us? Mostly in the same place. There are a few medications that can help with AD (unlike FTD). We had already tried one, but Tom couldn’t tolerate it. The Emory neurologist prescribed two new medications to try one at a time. He couldn’t tolerate the first, so I stopped it early on. But he has tolerated the second one, so we’ve now added that to his medication regimen. The doctor says it won’t reverse the losses he’s had, but it may give him a bit more focus. Every time he remembers to put his seatbelt on or recalls something I expected him to forget, I have hope that it’s working. Other than that—I see little difference. 

This neurologist also said, “I think we will continue to see next year what we’ve seen this year,” which was a more marked decline in Tom’s overall cognitive health. Emory has other resources to help us as well, some of which I’ve taken advantage of, and a nurse practitioner will see him in June. I could not be more relieved to have not so much another diagnosis as a big missing piece of Tom’s health care team in place. 

When we visited Tom’s primary care physician, she told me the same thing I’d been thinking: Diagnosis is important, but it doesn’t matter too much at this point. She still refers to him as having FTD since his atypical dementia looks more like that than anything else. I’m not quite sure where we “belong” in the dementia community other than that we know we’re dealing with this just as we have all along—one day, one doctor, and even one twisting, turning diagnosis at a time.  

If you or a loved one is dealing with dementia, what was your road to diagnosis like? Did it have as many twists and turns as ours? Feel free to share your story here or on social media. Our story matters—and so does yours.