Social worker, lawyer and health care technologist Radhika Iyer was diagnosed with Parkinson’s disease (PD) in 2015 — a difficult experience that spurred her ongoing, inspiring road to PD advocacy.
She’s since served a three-year advisory term on the Parkinson’s Foundation People with Parkinson’s Advisory Council — a panel of people impacted by Parkinson’s who shape the Foundation’s programs and priorities. Prior to that, she was a Parkinson’s Foundation Western New York board member.
These days she uses technology to forge community, friendships and understanding with others with PD, while breaking down stigma surrounding the disease.
She credits a dear friend, whom she has since lost to breast cancer, for recognizing her initial PD symptoms and urging her to visit a neurologist.
“I walked into the room, the neurologist looked at me, had about a 20-second conversation and immediately said ‘Here’s Sinemet. Start the medication,’” Radhika said. “That shocked me.” Radhika left her appointment with a prescription and little understanding of what a Parkinson’s diagnosis meant.
Radhika and her husband of 36 years, Dharma, PhD, a chemical/environmental engineer, were both dedicated to finding answers, and a doctor they could trust. They sought a second opinion and left that appointment even more confused. Radhika was given an incorrect diagnosis of corticobasal degeneration (a rare progressive neurological condition sometimes initially diagnosed as PD). The couple soon realized self-advocacy was critical and began empowering themselves with education.
Their journey led them to move from New York to North Carolina, nearer to their adult children as well as a movement disorder neurologist at Duke Health Movement Disorders Center, a Parkinson’s Foundation Center of Excellence, who reconfirmed Radhika’s initial PD diagnosis.
The couple settled in a community for active people 55 and older — a perfect fit for the pair who, at the onset of Radhika’s diagnosis, spent their weekends with a group hiking 200 miles across New York state.
Radhika and Dharma stay active, knowing that without mental and physical exercise and the right medications, Parkinson’s symptoms can progress quickly. Radhika also works to incorporate complementary therapies alongside traditional medicine. In addition to her neurologist, Radhika works with a naturopath (a health professional who employs natural therapies) and a physical therapist who specializes in brain diseases, such as Alzheimer's and a PD.
“When I got first diagnosed and when I started finding out about my disease, I was running helter-skelter, getting emotional,” Radhika said. “I didn't have a mentor.” She’s since learned a great deal about how to live well with Parkinson’s and she’s committed to sharing what she knows with others and would love to establish a PD mentorship program one day.
“We need mentorships — people like me who've been through the ringer with PD would like to share this information with others coming on board trying to understand their disease,” Radhika said. “A newly diagnosed person is going to begin to face the disease and is not quite sure where to begin. The community can help one another.”
To that end, she’s forged her own community and built friendships with people with PD and care partners across the nation. She is making an impact on a national scale in her volunteer role with the Parkinson’s Foundation, helping bring awareness to the disease and dispelling stigma.
Radhika and Dharma are as committed to each other as they are to advocating for the PD community and debunking disease-related myths.
“In many Eastern/Asian countries, there's always a sense that past karma may have precipitated this disease,” Dharma said. “This is not a karma thing. You're not paying a price for a past life.” Recognizing there are genetic, environmental and other factors behind diseases is important, he added.
“One of our goals on this journey for both Dharma and I — from a community standpoint — is to encourage Indian individuals who have this disease to come forward and advocate for themselves and advocate for others"
“What I have done for my own sense of purpose and sanity is to have a friend with Parkinson's — an Indian woman who I found on a Facebook chat for Parkinson’s — who I call first thing in the morning just to see how we are doing, so that we feel grounded,” Radhika said. Her friend lives in New Jersey but was raised in India, in the same community as Radhika and Dharma. Along with the woman’s husband, they all share the same first language.
The women have connected with other people in the U.S. with Parkinson’s who also hail from India. They organize regular Zoom calls to connect and just talk.
Radhika has reached out to people all over the U.S., and recently Canada to ask them to join the group’s Zoom calls. As Radhika has discovered and shared with her new friends, there is more to this community than just Parkinson’s. “Just connecting and speaking the same language can make all the difference,” Radhika said.