A Patient Perspective on the Progressive Nature of PD, Impact of Nonmotor Symptoms

Michael S. Fitts, assistant dean for user access and diversity for The University of Alabama at Birmingham, discusses the process in reporting the progressive symptoms of Parkinson disease to a care provider, and the impact of nonmotor symptoms of anxiety and depression, particularly amid the pandemic.

Transcript

AJMC®: How do you go about reporting new symptoms to your care provider and seeking treatment for these new symptoms that may arise as the disease progresses?

Fitts: Well, really and truly, what I end up doing is, first of all, let me make a distinction here. So, I usually, and I would recommend [this to] people with Parkinson disease, go and see a movement disorder specialist. Basically, what that means is a neurologist has gone on specifically and taken additional training to become an expert prominent in the Parkinson arena. So, I do go and see a movement specialist.

So, what I do is I usually see her maybe once a year because my symptoms aren't really progressing that much. And then at the halfway point of the year, I see a nurse practitioner and she goes over some questions or what have you. So, as far as reporting new symptoms or worsening of symptoms, I either A, wait until my appointment, or B, the University of Alabama, where I'm employed, has a patient portal and you can report things like that.

So, this became extremely important as of earlier this year, because I was really having a challenging time with COVID-19. And some of the specific things that were going on were the whole thing about being quarantined, people got furloughed. A lot of my employees were furloughed, which really made me upset; it was just really hard to deal with that.

At the time, I had a new boss and I didn't know necessarily what was going on, because in essence, when you have a new boss that comes in, potentially he or she might want to shift the staffing up or bring in some of their own individual employees, or that kind of thing. So, it was just so much going on.

AJMC®: How has treatment fared over the years in providing relief to symptoms of Parkinson disease? Are there any unmet symptoms you feel warrant greater focus for therapeutic intervention?

Fitts: I think, overall, that the treatment that I've been getting has been really good. I think the movement disorder specialist that I have really understands me and knows how to ask the right questions, and she can do enough observation in order to kind of tell how I'm doing.

So, if you're talking about 2011, and it’s 2020 now, I see very little significant change from my first diagnosis. Maybe some of my memory, because there's a medication that I take—and that's actually one of the side effects, loss of memory—but unfortunately, or fortunately, it's one of the few medications that actually work on me, because I went through a battery of tests and all kinds of prescriptions and nothing seemed to work. So, when I did find something that worked, I wanted to hold on to it. And if it means that my memory kind of comes and goes, I'll take it because it's still the best quality of my life. Oftentimes, the cognitive symptoms can really be increased because of the physical symptoms.

So, if I'm with a person, maybe having a work conversation, what have you, and I'll inadvertently have a tremor, and then you see like a panicked look on their face, and that—you don't want to cause alarm or whatever—that ties in to the anxiety and depression. Because to be honest with you, before I really shared it with anybody, I took about a year. And I kind of feel like the time period that I did finally reveal it, which was first to my employer, I really did it because I felt like before too long people were going to be able to tell that something was wrong. So, with my tremor being what it was, I had to go ahead and inform my place of employment just so that they could be aware.