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“Enjoy your ups, and have the courage to face your downs”

Throughout her life, Dr Shantipriya (50) from Chennai has worn many hats – a third-generation doctor, an ophthalmologist, an artist, an author, a model, a social worker, and a motivational speaker. But the one that has emboldened her the most? Being a Young-Onset Parkinson’s warrior.

In early 2010, Dr Priya’s husband, Dr K. Siva (51) and son, Dr Khanishk (25), noticed that her right arm was unusually stiff while walking, but she thought she had sprained it at the gym. A few months later, she found that her right foot just wouldn’t go inside her slipper. That’s when she sought the opinion of specialists. To her utter shock, neurologists confirmed Young-Onset Parkinson’s, an uncommon, progressive disorder that occurs between the ages of 20 and 45. Priya was only 35 at the time.
 
Denial ultimately led to acceptance, and Priya started researching the disease. Learning that exercise could help delay its progression, she started pilates, weight-training, spinning and other exercises for nearly three hours daily. Encouraged by a close friend, a gym trainer, in October 2018 she represented South India in the Miss & Mrs International pageant at Singapore. But her “first turning point” came before the event, when she revealed to everyone that she had Parkinson’s. “I felt like a burden was off my chest – now I didn’t need to hide the symptoms!”
 
Priya then decided to create awareness around Parkinson’s through her Instagram page called ‘Shake Off and Move On’. She points out that people only associate the disease with tremors but could present through over 40 symptoms including disorders of speech and balance, insomnia, incontinence, anxiety, depression, and fatigue.
 
The year 2019 was a momentous one for Priya. Early that year she quit her medical practice and in April, collaborating with like-minded people, she set up a foundation called SAAR – Support, Action, Awareness, Rehabilitation – to help people know more about, and manage, the disease. In June she attended the 5th World Parkinson’s Congress at Kyoto, Tokyo. Designing the logo for SAAR Foundation sparked her artistic talent (she had won prizes for painting in school) and she embraced abstract art to express her emotions of living with Parkinson’s. Chosen as an Art for Inclusion Fellow, her work ‘Metamorphosis’ was exhibited at IIS 2019. And on 30 November she underwent Deep Brain Stimulation (DBS) surgery.
 
DBS helped control the symptoms and reduce the medication. This “new lease of life” also led to compulsive behaviour: she completed a new artwork every other day and started to write. During her first solo exhibition ‘Minerva’ in March 2021, her book ‘Metamorphosis—Reflections on My Life’s Journey’ was launched. She also participated in group exhibitions in Bengaluru, organised by Pragathi and Atypical Advantage. Her painting, ‘Meraki’, was selected for the London Art Biennale in July 2023.
 
People mistakenly think that because she has undergone DBS she is cured. “I’m able to cycle, dance, do Zumba, but people wonder why I can’t walk,” she observes. “That’s because I have a shuffling gait and it’s difficult for me to walk.” Being a doctor is a kind of double-edged sword. “I understand my symptoms better than those who have no medical knowledge, but the scarier part is that you know the stages, you know how it develops.” However, all of it has helped her accept her condition better. “Now I live for the day,” she continues. ”Whatever I want to do, I do!”
 
Last year, she went on an inclusive trek up the Meesapulimala peak in Kerala, the second highest in the Western Ghats, planned by Able Aura. She wants to travel to Turkey, Greece, and Australia, to do more treks, more paintings. “The list is endless, and I keep adding to it every day.” About Oreo, her brown-and-white Shih Tzu terrier, she says, “He’s my therapy.”
 
Priya has now started working on her book, ‘Living Well with Parkinson’s’, to help persons with Parkinson’s and their caregivers cope with the disease. “After 2021, I went into depression and began to have other mental issues. The last two years have been tough. I didn’t paint for a year, lost interest in exercising too.” The non-motor symptoms are more debilitating than the motor ones. “But now I’m bouncing back,” she says hopefully. “We have one life; we have to live it to the fullest. Earlier, I was very shy and introverted, but now I do motivational talks and workshops. I think I can say my life has been in two parts: before Parkinson’s and after Parkinson’s.”
 
She concludes: “I don’t think that I’m disabled. Before Parkinson’s, I was only a daughter, doctor, mother, and wife. But Parkinson’s has made me an artist, an author. It made me a better person.”