Who Is Not Being Served?
I have been a Parkinson’s doctor for almost 26 years and have been endlessly inspired by my patients and their families. I was trained to approach the care of people living with PD in a very cookie cutter way, but I soon realized that understanding the person living with the disease and who they really are and what defines their health for them as an individual is so critical. During the pandemic, I interviewed over 120 thought leaders in our field on what matters most in PD in 2020 and beyond. From those conversations, I have changed the way I live, practice and my focus and here are some things that I have learned.
1. Levodopa in Sub-Saharan Africa: Not being able to prescribe the most basic drug to replace dopamine that has been available for over 70 years is a travesty. So much of the global population is needlessly suffering due to politics and regulatory issues. We must work together to solve this as soon as possible. The current Intersectoral Global Action Plan (IGAP) provides us with critical opportunity that should not be squandered.
2. Women living with PD are not represented in research or in our current treatment paradigms at all. Almost all historical research in PD has been done on male subjects or male animals since the complexity of menstrual cycles in females was thought to put a wrench in data interpretation. The psychosocial aspects and stigma endured by women living with PD is tremendous. The activism and advocacy of women living with PD has been incredible since our paper on Gaps in Care for Women Living with Parkinson’s disease in 2022. In this short time, a pregnancy registry and an app to track symptoms and hormone cycles have been created. There are still tremendous gaps in care for women with PD.
3. The image of PD as a motor disease affecting older, white men has led to tremendous disparities in care. Black, Latino and Asian Americans have tremendous delays in diagnosis and in getting care in the USA. Increasing disease awareness and helping the general public worldwide to understand that anyone can get PD is key. Public service announcements should target school aged children on brain health to educate on how to identify common neurological diseases.
4. Though motor symptoms are the most visible manifestations of PD, the most bothersome symptoms are actually the non-motor and mental health issues. Patients struggle with these hidden symptoms and may not even realize they are part of the disease. Mental health issues such as depression, anxiety and apathy are extremely common and tremendously disabling and we must create targeted education to ensure that everyone knows they are part of the disease.
5. Living with stigma is the rule and not the exception in PD. People living with the disease and their caregivers can experience tremendous stigma and can become very isolated. Loneliness can increase the risk of getting PD and speed the progression of symptoms. Social support is critical and is the lowest hanging fruit and the missing part of the current dialogue on PD management. Peer to peer advocacy can be a huge game changer. Helping patients to connect with one another and to start advocating for one another is so inspiring and can also be tremendously therapeutic!
6. Having a sense of agency is critical for all of us especially when living with a chronic disease. We each need to feel like we are part of the solution and that we have some control over own outcome. I love the concept of wellness- “the active pursuit of activities, choices and lifestyles that lead to a state of holistic health”- where a person can choose what they can do for themselves to live better every day.
7. The medicine is not just pills or surgeries- it includes the people living around you and supporting you in your community. Movement, diet, sleep and mind-body approaches are also part of the prescription for wellness.
8. The rich and complex cultural context which defines each of us is so important to consider in approaching our health. This includes not only gender, age, race, language, resources but also understanding one’s spirituality, meaning and purpose and what brings us joy and comfort in tough times. Our healers should know this about us and use it to help heal us.
9. Lifting up the patient voice has allowed me to practice in alignment with what I know to be true. I have come to realize that all of the answers in approaching PD are not going to come from neurologists alone. Putting the patient and their loved ones in the center of care and working together across disciplines and silos with the multidisciplinary team is important especially since there is a shortage of movement disorders specialists and neurologists.
10. Parkinson’s is the fastest growing neurological disease- it has doubled in the last 40 years and was slated to double in the next 20 years, but we have already made that milestone in just 6 years. Toxins in the environment are a huge contributor to these exploding numbers, and we must work together to stop using and clean up known toxins. We must collaborate, advocate and fight for what we believe in, together as a global force- this is the only way forward!
Indu Subramanian, MD is clinical professor of neurology at UCLA and director of the SW PADRECC at the Veterans Affairs. She has attended/presented at past WPC Congresses.
Ideas and opinions expressed in this post reflect that of the author(s) solely. They do not necessarily reflect the opinions or positions of the World Parkinson Coalition®