A Patient Perspective on Misconceptions, Challenges in Parkinson Disease

Michael S. Fitts, assistant dean for user access and diversity at the University of Alabama at Birmingham, discusses misconceptions of Parkinson disease (PD) related to race and age, as well as advice for patients in their treatment journey.

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

In addressing those newly diagnosed or potentially at risk, what advice would you give on some of the challenges or difficulties associated with PD?

Fitts: Well, specifically it’s really, really difficult and a challenge because there's really no definitive test to see if you have PD, but the first thing that I would encourage individuals to do is make sure that you're seeing your physician. It could be going for your routine physicals and doing that sort of thing, because that's a lot of times where people could discover or the physicians can discover that something is not right here. If it's left up to our own devices, we're not going to know, because like I told you, what my experience with PD was—I was mortified. I didn't really know what to think. I thought the diagnosis was incorrect. This couldn't be happening to me, isn't this for older individuals?

So, I definitely understand the stigma that it has along with it. And something else that concerns me too, other than it being early-onset, is specifically people of color. A lot of times, especially men in the African American culture, they don't feel comfortable going to see physicians and there's like a trust issue. I'm sure you probably are familiar with, for instance, the Tuskegee syphilis incident. That still has a bad taste in a lot of people's mouths.

So, you really have to be somewhat creative to get people to get the treatment or the care that they need or the diagnosis they need, because the center of the African American community is usually the church or the faith-based organization. So, whereas somebody might listen to their pastor or some other respected individual, if it came to be like a doctor or a researcher from a university or what have you, there's still not the trust system out there.

Just to bring it home too, I really am proud of the work that especially the Michael J. Fox Foundation and other organizations like it have been doing. One thing that I discovered that's extremely important, and they have discovered it too and I love it, and that's the importance of incorporating patients into research, because I think a lot of times scientists and researchers get in a room and they get excited about the whole technical part, but they've done all this work and then you come back for a patient, it's like, no, this is not going to work, because you didn't take into consideration this, this, this, and this.

So, there has been an increase in the companies or the research places to include patients from day 1, and I think that's extremely important. So, as you'll notice, too, like I was saying earlier about coronavirus disease 2019 (COVID-19), for instance, one of the symptoms of COVID-19 is the same as a symptom in PD, and that is loss of smell, which is really odd. I can't remember how long ago it's been since—I can smell some things, but I just don't really have a keen sense of smell, it would have to be something really, really powerful, like maybe microwave burnt popcorn or something like that, but otherwise, I can't really smell and that's one of the symptoms of COVID-19.

So, when there was a discovery that people in underrepresented communities, like people of color, the Latinx community, were testing positive for COVID-19, and the numbers were just off. So, I was saying that I kind of felt like that particular incident kind of knocked us back a little bit, but we have to get back on the horse and go try to move forward again. And I do think that if people continue, especially the companies continue to incorporate the patients into their research and have them in from the beginning, we're going to be really, really successful and hopefully we'll be able to find a cure for this disease.

AJMC^®: What do you perceive as the biggest misconception about PD?

Fitts: We talked about it a little bit, touched on it, and I would say primarily the look of PD, because if you do any research or you've seen an advertisement for a clinical trial or something, a lot of times all you'll see is a White man or a White woman and there's no other kind of diversity, I mean physical diversity, that you can actually see.

So, I do think that there's a powerful misconception about the individuals that can contract it. The other thing, obviously, is age. Like I was saying before, the age is typically 60 and above, but I know people or have come across people through my advocacy work that maybe were diagnosed in their 20s. So, it's really, really powerful, and we've just got to get the message out that it does not look the same on each individual.

As far as the information that we're putting out, whether it's like flyers or clinical studies and that kind of thing, we need to be able to exhibit the diverseness of the condition so people won't make that assumption.

Another assumption that people make too is that unless you have a tremor, you don't have PD. Same thing, if you have a tremor, it doesn't always necessarily mean you have PD. So, it's really that delicate battle, going back and forth and trying to do the best that you can do with the information that you have.

AJMC^®: Lastly, do you have any other concluding thoughts?

Fitts: I do, I want to encourage anybody out there that has this condition to make sure that you don't separate yourself from other people, because I know it can be depressing, and you're having all these symptoms, but the best thing to do, and one of the best things that I did, is try to stay involved and find a local support group, because it really, really helps. Just like I was talking about the whole perception of PD, if you’re going by the materials that are going out now you would be somewhat surprised when you go and see who actually has the condition.

So, I would just encourage people to continue to go and see their physicians, don't separate yourself from them. See if you can find some type of support group, because like I was saying, that's the best decision that I made as far as my treatment is concerned.

There's a couple of other things too—exercise is key and I know different people have different movement challenges, but there's things that you can even do in a chair, seated down, because it's all about moving and trying to stay active, because when you do that, I think it really makes a difference in your progression of the disease. And so the whole support group idea, you're really going to need a support system and that's really a great place to start.

Then as far as, speaking of support systems, I was talking about the clinical researchers as well. They need to be a part of your team. It's not just a neurologist, it's not just a movement specialist, it's not just the researcher, and it's not just yourself necessarily, they all need to be on a team and making sure that you're getting the quality care that you need to get.

Let me just mention this, too, it’s a little bit off topic, but just to give you something else to go on. So, one of the common ways to treat PD now is something called deep brain stimulation where they go in and put electrodes in different parts of your brain. So, the patient is actually awake during all this time, because the physician is needed to ask questions and you don't want to be messing around, hitting the wrong thing, or giving a shock to the wrong part of the brain.

So, I actually think that's great and it's really encouraging for some other things that have come down the pike. I went through a series of tests to see if I would be a good candidate for that surgery, and they came back and told me that I was, but I'm not planning on doing it. If I do, it'll be much later. I think it's way too early right now. While the results are very, very positive from people, there's also some on the other hand, because I've heard of people having some type of infection in the electrode site that they put in. They’d have to go back in and either do it again or switch it out. I definitely don't want to go through that. I want to have it done 1 time and just be completely finished with it, and then move on with everyday activities.

AJMC^®: To learn more, visit our website at AJMC.com. I’m Matthew Gavidia, thanks for joining us!