A Patient Perspective on Early-Onset Parkinson Disease

Michael S. Fitts, assistant dean for user access and diversity for The University of Alabama at Birmingham, speaks on his experience being diagnosed with early-onset Parkinson disease at the age of 38 and the challenges and misconceptions associated with the condition.

Transcript

AJMC®: Hello, I'm Matthew Gavidia. Today on the MJH Life Sciences’ Medical World News, The American Journal of Managed Care® is pleased to welcome Michael S. Fitts, assistant dean for user access and diversity for The University of Alabama at Birmingham.

Diagnosed at the age of 38 with Parkinson disease, Michael serves as an advocate for the education of those with early-onset Parkinson disease and is part the Michael J. Fox Foundation Patient Council.

Michael, glad to have you on. Can you just introduce yourself and tell us a little bit more about your work?

Fitts: Yes, thank you for having me. As you already said, my name is Michael Fitts, and I am a patient advocate for the Michael J. Fox Foundation's Patient Council. As far as my full-time job, I work at the University of Alabama at Birmingham, specifically UAB libraries, and there I serve as assistant dean for user access, which is all the services that we provide for the students, staff, and faculty.

As far as when I got diagnosed, it was in 2011, and I was 38 years old. So, I'm still working, still trying to stay positive, and really show people how you can successfully live through Parkinson disease.

AJMC®: To start us off, can you share what was your initial reaction to your Parkinson diagnosis

Fitts: Yeah, I was kind of shocked. Let me just give you a back a little bit of background. So, I knew something was going on probably at least a year or 2 before that. I was kind of feeling just odd and not feeling myself.

We did, me and my primary care physician, performed all kinds of lab work, blood work, that kind of thing, and we still couldn't determine it. So, she knew about the tremor that I was having, but we didn't really think anything of it. So, finally, after all of the tests, and the blood tests never came back saying anything, I was recommended to a neurologist, who immediately pretty much said, "You have Parkinson disease."

So, as you can imagine, receiving that type of news, it just really, really caught me off guard, and I was just, I was almost numb. I just can't really even describe it. So, at that time, the neurologist asked me did I had any questions, which, I mean, I was just so overwhelmed. I didn't know what to say or what to do, what to ask. Now that time, too, I did ask him, "Could I take an MRI?" He was like, "Absolutely not. That's a waste of time and a waste of money."

So, come to find out, after I got rid of him and replaced him with another doctor just to get a second opinion, she agreed with the first opinion, but the difference is when I spoke to her about having the MRI, she was all for it. She's like, "I can understand how you would want that and just rule things out."

Parkinson disease, there's really no definitive test for Parkinson disease, let me just say that. There's certain symptoms, but it's not like a blood test or urinalysis or anything like that. So, I didn't know at the time, but an MRI would not show anybody if you had Parkinson disease either, but it's the way he came across in his bedside manner, what have you. But I am glad that I had an MRI because come to find out I have a small tumor on my pituitary gland, and so I want to make sure that it's not growing and there's been no changes. So, I do have that checked every year.

AJMC®: Delving into the discussion on stigmas related to Parkinson disease, it is typically perceived as being prominent in older populations. Can you discuss the process in being diagnosed as someone with early-onset Parkinson disease and some stigmas associated with that?

Fitts: Basically, you're in the category of early onset if you get diagnosed at the age of 50 or earlier, because I think the average age for people getting Parkinson disease is like 60 maybe. So, once again, getting diagnosed at the age of 38 was just kind of like unnerving, and it's odd, too, because, frankly, you really don't see a whole lot of people of color that have gotten or have been diagnosed with Parkinson disease.

So, as far as my knowledge of Parkinson disease at that particular time, the only thing that I really knew about it was that Michael J. Fox had it and Muhammad Ali had it, and since I'm not a boxing champion and I didn't go through all of that, I just got diagnosed. So, a lot of the stigma that comes along with it is that people just make assumptions that you couldn't have it. It’s funny, but I'm in my support group meetings, and a lot of people when I'm standing around, they're like, "Oh, are you our speaker?" And I'm like, "No, I have Parkinson disease." They're like, "No, you're pulling our leg!" "Yes, I have Parkinson disease." So that's kind of like the stigma and people make assumptions that I am not living with the disease.

So, I get a lot of people also saying, "Well, you don't look like you have Parkinson disease," which I guess that's partially a complement, maybe partially not. I don't think people necessarily know any better, because obviously you can't really necessarily tell specifically that somebody has Parkinson disease. I think most people that try to diagnose or self-diagnose think that it's all about a tremor, and there's so much more than that. In fact, a lot of Parkinson patients don't even have tremors. It just so happened that that was one of my challenges and why I ended up going to see a physician to get diagnosed.

AJMC®: Building on that conversation on symptoms, can you speak about the progressive nature of Parkinson disease? What are some motor or nonmotor symptoms that have grown since diagnosis?

Fitts: Really, to be honest with you, a lot of my symptoms that I have are cognitive. So, anxiety comes with it, which I was already an anxious person; depression comes with it. Those are probably some of the most prominent ones, because I think it makes it worse when you're depressed and can't really get out of bed. So, that's when I got diagnosed with clinical depression, because I was just having such a hard time dealing with that devastating news.

So, some of the motor symptoms are, of course, tremor, stiffness, handwriting is really increasingly small and you can't really read it, which is a challenge for me being in the workforce. So, I could be in a meeting and I'm taking notes about what's going on. By the time I get back to my office, [and] I try to read my notes, I can't read them and they're illegible–they're too small, and it’s just all over the place there.

So, some of the other challenges that I face in still working are, I feel like I've lost a lot of my executive functioning skills. So, it's really hard to be an administrator when, just for instance, if I have a task to do and the task probably should take maybe an hour, hour and a half or whatever, it'll take me all day to do it. Then you kind of look around, it's like, well, where has the day begun? I thought that I was spending a good amount of time on it, but it's just taking so long.

So, it's definitely a process in trying to get yourself trained and see how you can kind of like maneuver around it. All Parkinson patients or people living with Parkinson disease don't necessarily experience the same difficulties and challenges, but they all have their own issues–we all have our own issues and challenges.