Parkinson's disease: Unmet needs, Unheard Voices & Hidden Faces

I had the pleasure of sitting down with my co-author, Indu Subramanian to learn about her passion, how the pandemic has affected her and what may be coming for Parkinson’s Disease in 2021. Indu has spent the last year developing a series of virtual support groups with the PMD Alliance. These programs collectively highlight important and emerging issues in PD. She has expanded upon these issues in blog posts on Parkinsonsecrets.com —she has been active in supporting the Parkinson’s disease community throughout the prolonged pandemic.

What has the pandemic taught you about

healthcare?

The pandemic has wreaked havoc, turbulence and uncertainty, but has also illuminated a number of unmet needs for the Parkinson’s disease community— I hope to focus on these needs in 2021. I have realized the importance of global connectivity— how something that happens in a far away region can significantly impact the health of others— many miles away. I think this global connection is something that we can and should harness for the good of all in PD. We can learn from each other as providers, and I hope that 2021 will inspire more global collaboration— we have the opportunity to partner with our colleagues across the world to evaluate what is working and what is not working for persons with Parkinson’s disease. For persons with Parkinson’s disease, I already see an amazing network of global connections emerging on Twitter, Facebook and other social media platforms including the formation of the PD Avengers (an amazing international group of patients with super-powers!). The PD Avengers have been rallying to help all nations in Africa gain access to basic and critical medications like Carbidopa-levodopa. We hope to continue to highlight these gaps in care on our series this year with hosting guests doing amazing work in African and India. It is lovely to see persons with Parkinson’s supporting each other with local missions, but also to see the breaking down of the silos— working across disciplines, across nations and across titles (people with Parkinson’s disease, doctor, caregiver) to advance the cause.

What have you learned in terms of what matters in

health?

I have become a big believer in social determinants of health. I have a background in integrative medicine. I have been attending conferences in this arena for several years and have been learning about how social connection, race, socio-economic status, air quality, global warming and even the zip code in which we reside— can all significantly impact our health. We have been performing research on social connection and how vital it is for the health of the Parkinson’s disease community. We wrote up our recent findings in a paper in the Nature Parkinson’s journal. I hope to focus more on social determinants of health .

I want to continue to raise awareness of the importance of addressing loneliness. This year I had the honor of delivering a TED talk on this topic to the Veterans Administration— to teach people about how loneliness has an impact on mental health and to discuss the real risk of suicide. Part of this talk was included in the VA’s 75th anniversary video ( min 30-32)— I am passionate about being proactive in reaching out to our neighbors and to forgotten friends (during the pandemic). This message should be disseminated to everyone on the planet.

I am excited that Dr. Vivek Murthy who wrote the book “Together” will be our newly appointed Surgeon General and will focus on these social determinants of health. I hope that we can work together to find more “Social Prescriptions” for persons with Parkinson’s as well as for their caregivers. We must find a way to identify persons who are at risk for loneliness and to connect them with support groups or volunteers— we must keep them connected and safe. The VA’s Compassionate Contact Corps is a great example of such an intervention. We need to create more innovative interventions aimed at “social prescribing.”

What do you think is the top priority in 2021 for

persons with Parkinson’s?

Mental health support is vital for 2021 and beyond. Though I have been very worried about the effects of the pandemic on the mental health of our society as a whole, I have a magnified concern for our persons with Parkinson’s and their caregivers. As we know, PD causes both motor and non-motor symptoms. The non-motor symptoms negatively influence quality of life much more than motor issues in many if not most patients. I believe that COVID-19 is causing a societal trauma similar to the historical trauma of a world war. This trauma can have tremendous impact on our mental and physical health. I believe that our top priority should be to align resources for mental health support for persons with Parkinson’s and their caregivers. We need to assemble a global collaboration with psychiatry, psychologists, social workers, neurologists, geriatricians, allied health professionals, and stake holders— including all the Parkinson patient advocacy organizations and support groups. The educational resources for health care providers and persons with Parkinson’s need to be well organized and disseminated widely— to reach all patients world-wide. There is a huge stigma associated with mental health issues and patients often do not complain to their providers. I believe that we need to organize support groups, peer-mentors, coaches, community health workers and other innovative strategies to meet patients where they are within their communities— in order to help support and bolster mental health needs.

What can we offer to help mental health needs once

we identify the problem?

I am personally a big believer in the importance of mind-body as well as lifestyle approaches in supporting wellness— inclusive of mental health health. If we can help teach meditation, yoga, tai chi, and breath work (pranayama), these can be very powerful. Additionally, a healthy diet, exercise, sleep, social connection, and a positive attitude are all also very important.

I have recently become more interested in learning what practices help patients to succeed in Parkinson disease. I think attitude is definitely part of the secret. I think it is important to learn more about ways to teach people how to shift attitude. I do think that having a sense of purpose or finding meaning in life, re-setting expectations, developing resilience and feeling a sense of agency all contribute to the equation.

I would love to learn more from persons with Parkinson’s about what they feel enables success. Some call it the “secret sauce”… I have opened my mind to realizing how deeply the mind and the body are connected. I am trying to learn more about strategies to help the mind and the autonomic nervous system thrive. I think health care providers are experiencing a huge amount of strain and burnout during this pandemic. We are just starting to appreciate the toll this is taking on mental and physical health. As a wise person with Parkinson’s (Ben Stecher) recently stated, “we Parkinson’s patients are used to dealing with living with uncertainty… so these unprecedented times are an extension of what we deal with on a day-to-day basis.”

I do think that we can all learn from each other and from persons with Parkinson’s— there exists an untapped wealth of tips and tricks— for survival, thriving and coping. We have an opportunity to be more open- minded and to think of the “out of the box” solutions.

What else has 2020 revealed?

In last week’s interview/blog post, Mike had mentioned the remarkable success of working together in the science community and that with the right collaboration and funding we rapidly created the COVID vaccine. I am very heartened by this warp speed success story.

2020 has however also highlighted the systemic issues in our health care system leading to disparities in health care delivery with respect to race and socio-economic status. I would like to explore these issues further in 2021. In our virtual support group series we recently discussed issues around some of these disparities with Nabila Dahodwala MD. There are disparities in care concerning gender issues that I hope to explore with focus groups and interviews. Additionally, I want to explore the influence of hormonal influences that alter PD symptoms in women. Most studies in PD are biased toward studying only affluent, caucasian, married men. In my view, we must find ways to improve access to care and research for all under-represented patient groups. A silver lining of the pandemic is that tele-health may remove some barriers to accessing care and participating in research— hopefully building a bridge to the underserved communities.

I am very hopeful that despite the tremendous loss and suffering this pandemic has wreaked, that there are silver linings that may have lasting benefits for the Parkinson community. We must seize this window of opportunity to rally as a global collaborative— I believe that together, we can make a difference in the quality of lives for all persons with Parkinson’s. -Indu Subramanian MD

To read more books and articles by Michael S. Okun MD check Twitter @MichaelOkun and these websites with blogs and information on his books and http://parkinsonsecrets.com/ #Livingwith Parkinson’s #EndingPD #Parkinsonsecrets #LessonBedside

He also serves as the Medical Director for the Parkinson’s Foundation.

To see more on Dr. Indu Subramanian she does live interviews of experts in Parkinson’s for the PMD Alliance.