Dr Rachel Dolhun on Innovations by MJFF to Assist the Parkinson Community Amid the COVID-19 Pandemic

The Michael J. Fox Foundation has implemented a variety of resources for people with and without Parkinson disease to address emerging issues precipitated by the COVID-19 pandemic, said Rachel Dolhun, MD, vice president of Medical Communications at The Michael J. Fox Foundation for Parkinson Research.

Transcript

AJMC^®: Hello, I'm Matthew Gavidia. Today on MJH Life Sciences News Network, The American Journal of Managed Care^® is pleased to welcome Dr. Rachel Dolhun, vice president of Medical Communications at The Michael J. Fox Foundation for Parkinson Research. Can you introduce yourself and tell us a little bit about your work?

Dr Dolhun: I’m a movement disorder specialist, which means I'm a Parkinson disease (PD) doctor, and I help people with PD and their families understand the disease and the symptoms that go along with it, as well as connect to the latest research.

AJMC^®: Can you explain the physical threat of COVID-19 in the PD community?

Dr Dolhun: Right now, there's no evidence to suggest that people with PD per se are at an increased risk for getting coronavirus or having a more severe course with the disease. So that's to say that if somebody has PD and no other comorbidities, no other diseases, they are not at an increased risk for getting coronavirus or again having a more severe course with the disease; but people with PD who get any kind of infection, whether it's coronavirus or urinary tract infection, they can get a temporary increase in their PD symptoms.

This pandemic also has upended life for everybody, PD or not. So, people with PD have had more difficulty with managing their symptoms, keeping routine, exercising, which is so important for people with PD, caring for a loved one with PD. So, as I said, it certainly has made life more difficult for everybody, PD or not.

AJMC^®: The pandemic has brought a myriad of issues not only physical, but psychological as well. How could elevated factors such as stress and anxiety, which are already common in the PD community, prove significant in people with Parkinson disease?

Dr Dolhun: Well, you said it, these mood changes are already pretty common in people with PD. Up to 50% of people with PD experience mood changes, whether those are anxiety or depression, and coronavirus has certainly heightened those symptoms. So, many of us are experiencing increased stress, anxiety, and it's important to recognize that you're not alone with these symptoms. There are many ways around these that could include making sure that you keep your routine, that you don't experience sleep changes, which can worsen these, that you stay in the present moment—you don't get caught up in that worry spiral or thinking 17 steps ahead about what's going to potentially happen in the future, that you limit your news intake because the media and worrying about what's going to happen can be really anxiety provoking, and of course that you talk to your loved ones, you talk to mental healthcare providers or other clinicians. Virtual healthcare is available right now in a lot of areas and take medication if that's helpful for you.

AJMC^®: In addition to psychological effects, “stay-at-home” orders nationwide have caused many people to be completely stuck at home. How should those with PD approach this situation?

Dr Dolhun: Well, first, I think it can be really helpful to try to reframe this. So, a lot of us are feeling stuck at home, but we're staying at home because it's really for our own good and for the good of other people. So, when we can try to reframe this and think about what we can do, rather than what we can't do, it really is a positive mind shift.

Then we really have to get creative and make sure that we stay connected to our loved ones and to our community members, and that we stay active, especially important for people with PD where exercise is so critical, not only for well being, for boosting mood, but also for the management of symptoms.

AJMC^®: Are there current recommendations for those with PD to overcome potential bouts of loneliness caused by social distancing?

Dr Dolhun: Again, a reframing here. So, social distancing does not mean social isolation. I would say make it a priority to schedule time with others. There are so many ways to do this now—again, technology is our friend here. So, scheduling virtual chats, coffee breaks, cocktail hours, sing alongs, online workouts–whatever it is that's important to you or that you can do to connect with others, your loved ones, your friends, other people in the PD community. Again, schedule it and make it a priority. If technology doesn't work well for you, the telephone still works too. So, just making sure that you're connecting with others and scheduling that into your week.

AJMC^®: What should people with PD, particularly those who are older and not technologically proficient, understand about services such as telehealth and online workouts?

Dr Dolhun: Technology and telehealth can be particularly daunting, especially if you're new to this; but I think it's important to understand that this can open up a lot of avenues to care, to connection, to staying active. So, be patient with yourself—take it slow, ask for help. There are a lot of people who are pretty tech savvy, including people at your doctor's office. So, again, be patient, be flexible and ask for help because these are ways to get care during this time, to stay active during this time–so, just look for it and take it slow.

AJMC^®: As the hysteria of the pandemic may influence those with PD to avoid outside contact, are any accommodations being provided via clinical trials? Are patients still able to receive these innovative therapies?

Dr Dolhun: Well, many clinical trials have paused enrollment or in person visits for safety reasons during this time, but online research is ongoing and is available. One example of this is the Michael J. Fox Foundation online clinical trial, which is called Fox Insight. This is an observational study that's been ongoing since 2017, which is available for people with and without PD, that people can participate in from the comfort of their own home.

Every 90 days you fill out questionnaires about your health, symptoms, and medications to learn how these change over time. Interestingly, Fox Insight just launched a study on COVID-19 over the past weekend, and this will help us learn more about how people with PD are impacted by coronavirus, how their symptoms may be changing, how access may be affected, and this will help us learn more about coronavirus and PD.

AJMC^®: Recently, the Michael J Fox Foundation released a “COVID-19 Resource Hub” to educate the PD community on emerging information related to the pandemic. Can you discuss some of the topics addressed through this service and any advice you have given patients so far?

Dr Dolhun: It’s a hub of all the latest information on coronavirus, which is changing daily almost it seems. So, it's information on what we know about coronavirus and PD, what we don't yet know on coronavirus and PD. It's also information on practical tips on managing PD during this time, how to ease mood changes, as well as, feelings of loneliness—how to stay active, how to make the most of your telemedicine appointment. So, it's educational and engagement information for people with PD and their loved ones.

AJMC^®: Are there any future services being considered to assist the PD community during the pandemic?

Dr Dolhun: We are monitoring the situation and keeping up on it as it continues to evolve. We're increasing our online offerings to help people stay updated and educated, as well as, engaged from home during this time. So we're increasing our online offerings. We're also keeping that sense of community and online conversation. We have Facebook live watch parties, we've got the #togetherathome for people to share what they're doing from home, and again, a lot of educational materials to keep people updated on the latest on coronavirus and PD.

AJMC^®: Finally, are there any topics that you want to address that have not been talked about?

Dr Dolhun: I just want to keep people motivated to stay connected, stay active, and stay in this present moment. This is such a hard and uncertain time for so many people with and without PD, but there's so much that we can do for ourselves and for others during this time.

AJMC^®: Thanks, Rachel!

Dr Dolhun: Thank you!

AJMC^®: To learn more, visit our website at ajmc.com. I'm Matthew Gavidia. Thanks for joining us.

Dr Dolhun has recently written on a variety of topics in her "Ask the MD" blog to help patients and families navigate life with PD during COVID-19.