Dr. Shanthipriya, Kanakavalli’s April Vignette, is an inspiration. An ophthalmologist, a mother, a wife and a friend, she was diagnosed with Early Onset Parkinson’s Disease in 2012. Reluctant at first to talk about her condition, she participated in an international pageant last year which helped her transform her approach to life. Empowered by this experience and the realisation that her condition does not define her, Dr. Shanthipriya launched an NGO earlier this month to offer medical support to those suffering from Parkinson’s while creating awareness about the disorder. In this incredibly honest conversation with Aneesha Bangera of the Kanakavalli Journal, Dr. Shanthipriya opens up about her journey from a shy, introverted doctor to an activist, while talking about her passion for fitness and travel, and the importance of taking her life one day at a time. In the simplicity of her words lies an important lesson in overcoming adversity. Taking time to browse through the Kanakavalli repertoire, Dr. Shanthipriya curates a selection of kanjivarams that bring together the traditional and the modern, a reflection of who she is. Excerpts from the conversation below...
The Strength Within
A Doctor First
The first doctor in my family was my maternal grandmother who was a medical professional at a time when very few women worked in the field. From a very early age, I was aware that being a doctor seemed to run in the family – both my parents, my maternal grandparents and my paternal grandfather were all doctors. And I think growing up in this atmosphere, surrounded by strong women role models, ensured that I was inclined to do medicine myself.
My brother and I also grew up watching our parents putting their patients first, and we have always been very service oriented as a result. We were used to our parents being away on work for long hours. But our paternal grandmother lived with us, and despite all of this I think we had very normal and healthy childhoods. I finished my 12th standard as a state rank holder at Church Park School, after which I did my undergraduate degree as well as my post-graduation in Ophthalmology at the Madras Medical College. Not many people chose to pursue Ophthalmology at the time, and I thought it was the perfect fit for me.
In early 2012, my husband first noticed an abnormality in my right arm. I thought that I might have strained a muscle while working out at the gym, and I ignored it at first. A few weeks later, though, I found I was struggling to put on my right shoe, and I realised I needed to see a doctor. I first went to an orthopaedic doctor, and was directed to a neurologist who diagnosed me with Young-Onset Parkinson’s.
After my diagnosis, I was in complete shock. I just could not accept that I had this disease. For a while my husband and I didn’t tell anyone else; I was not prepared to talk about it even with my parents and in-laws. Instead, I focused on researching the disease. As a doctor with medical training and experience, I think I was able to approach my situation with some amount of logic and scientific understanding. I read a lot about Parkinson’s and about people living with it. While reading everything I could get my hands on, I came across articles about the actor Michael J Fox who also suffers from Parkinson’s. I was amazed that he was able to continue living, working and being a successful public figure, and he became something of an inspiration to me.
It was at this time that I realised that I had to stop hiding, and start living my life to the fullest. I kept myself busy with family and I continued to go to work every day. Parkinson’s is a progressive disorder and there is still no cure, though there is a lot of ongoing research into the disease. I read somewhere that exercise can delay progression, and I began an intense fitness regime that I continue till today.
One of the things I realised very quickly was that there was no support group in Chennai or in India for people like me who were struggling with nervous system disorders. I had no community with which I could share symptoms or discuss my fears and achievements. So I focused almost completely on developing an exercise routine that suited me. I’m still doing my own research through trial and error to see what kinds of exercise seem to work the best for me. I truly believe that fitness has made me stronger, both physically and mentally. I start very early every morning, and have a personal trainer and nutritionist to guide me. I train for one and a half hours three mornings a week. On the other days, I either go for a jog or I do an aerobics class. I also do Zumba twice a week, which helps my coordination and balance. The Parkinson’s condition leads to lowered levels of dopamine, which is the neurotransmitter for movement. Exercise is a natural way of releasing dopamine, which is why patients with this disease need to stay very active in addition to taking medication.
An Unexpected Transformation
The decision to start living my life and to unleash my potential altered the way I approached life itself. For the first few years after my diagnosis, very few people knew about my Parkinson’s beyond immediate family and a very close circle of friends.
But all this changed last September. My spin trainer suggested that I audition in Chennai for the Mrs. Internations pageant. My immediate response was to say no. I had never even considered participating in something like this, and the idea was very new to me. As a doctor, it had always been important for me to dress well, but I’d never had any interest in fashion beyond that. I casually mentioned my trainer’s suggestion to a close friend who encouraged me to try, as did my husband. And so, my friend accompanied me to the auditions, and to my surprise, I was chosen for the next round.
I have always been very shy and introverted, but participating in this pageant forced me out of my comfort zone. I spent a full month preparing for the final, and this was a very challenging time for me. I confronted my strengths and weaknesses, and juggled my medical work with all the practice I had to do for the event.
I am on medication throughout the day to ensure that I can function normally. As the medicines wear off, my movements are slowed down. These are known as ‘on periods’ (when the medicines are active) and ‘off periods’ (when effects of the medication are wearing off). I had to plan all my practice accordingly. I have never walked the ramp in my life so I spent a lot of time learning how to do this. I had to learn how to put on make-up, and choose the clothes that I felt represented who I am. I was also working right through this time, so I had a rigorous schedule of exercise, work and practice. This intensive preparation was difficult but it also helped me become a stronger, more independent person.
For the pageant, I had to submit an introduction video. It was in this video that I disclosed to the world that I have Parkinson’s for the first time. I had finally come to the conclusion that there was no reason to hide the fact that I was living with this condition. I wanted to show people that I would not let adversity define me. This was a big step in accepting that Parkinson’s was a part of my life, and also that it didn’t change who I was.
The pageant was a four-day event in Singapore, with many rounds including a talent round. I was the only debutante, as all the other entrants had some experience with fashion, and I won the title of Empowered Woman.
Images clockwise from top left - Striking a pose during the evening gown round of the Mrs Internations pageant in Singapore in 2018; Dr Shanthipriya at the photo shoot round of the Mrs Internations pageant; Raising awareness for Parkinson's Disease at the launch of her NGO, SAAR, in April this year; Sharing her love for travel with her husband in Jaipur in 2017; An unforgettable trip to Egypt with her husband and son; Dr Shanthipriya in China with her husband and son
Shaking Off and Moving On
On my return from Singapore, I realised that I needed to share my story with as many people as I could. I suddenly felt incredibly empowered and I wanted my own experience to help others struggling with similar disorders. I wanted to create more acceptance and openness around Parkinson’s. And so, I started my own Facebook page and Instagram handle as soon as I came back. I called it Shake Off and Move On, and this was the first step towards what would become an NGO working towards these goals.
Through my social media handles I have been able to reach out to and motivate a lot of people living abroad. Some of my readers also have Young-Onset Parkinson’s, but many are living with other disorders. Unfortunately, in India there is still very little awareness and acceptance. People still don’t want to talk about their diagnoses, and few even know that Parkinson’s can affect those under the age of 40. I didn’t have a single follower from India, and this is what motivated me to set up a foundation here and reach out to people living locally.
My NGO SAAR (Support Awareness Action Rehabilitate) launched officially on April 7th this year. At the heart of the foundation will be a rehabilitation centre with a focus on land-, air- and water-based therapies. Currently, most neurologists just give patients tablets and tell them to come back in six months. But through my own experience, I have realised that you need to stay active right through the day and that exercise is crucial. This includes brain-body exercises that also delay the onset of cognitive failures. I have seen that exercise delays the progression of the disease, and I want to ensure that others suffering from Parkinson’s are also able to benefit from this.
Through SAAR, I will offer medical support and camps to those who cannot afford it, and design awareness programmes for patients and caregivers. My aim is for people with Parkinson’s to be able to become self-sufficient and improve their quality of life. Eventually, I want to build a home for patients who are terminally ill, offering palliative and supportive therapy till the end.
Having felt the lack of a support group after my own diagnosis, I hope to develop a sense of community through these initiatives. I don’t want patients to feel like they are alone on this journey. I want to reach out to as many people as I can and help in as many ways as I can.
Exercising definitely helps me feel more positive, but the bigger reason for my positivity is the incredible support system I have. My family, especially my husband, has been there for me at every step of the way. My two sisters in law are like sisters to me and have been strong pillars of support. I have a few really close friends who have also been amazing. It is only because of this network that I have been able to be open about my condition. People accept me for who I am and treat me absolutely normally. I am able to go about my daily life, stick to my regular routine, and this is so important for me. There is some progression in my condition, but as of now I’m able to manage it. I just have to take each day as it comes.
I take inspiration from every single thing around me, and every person I encounter. I find nature inspiring – beautiful sunsets and sunrises. I am inspired by people I see in the streets, by a little detail I observe in someone’s interactions. And Michael J Fox was definitely an inspiration for living with Parkinson’s.
A Travel Bucket List
Ever since I was young I have loved travelling. I enjoy exploring new places and experiencing different cultures. Last year I went on a holistic trip to Egypt which is one of the most magical places I’ve been to. The fifteen of us travelling together had a chance to meditate inside the King’s Chamber of the Pyramid and this was the most amazing experience of my life. Another place I really loved was Kedarnath. A few friends and I made the trip together, and it truly felt like heaven. There are two things on my travel bucket list. I want to see a sunset in Santorini, Greece, and I want to trek in the Spiti Valley of the Himalayas while I still can.
Beauty, Tradition and the Kanjivaram
To me, beauty is having a beautiful soul. Outer beauty means nothing in comparison to inner beauty.
Tradition is very important to me, even though I’m very modern in my outlook. I am quite a traditional person and I think this is what keeps the family together. Coming together with our families on festivals is at the heart of our traditions. It is what makes us such a close-knit family.
I wear saris very often and I think it’s the most beautiful garment for a woman. It spells elegance and beauty. I absolutely love wearing saris, especially kanjivarams. I love the feel of the silk, and how unique it is to South India. For me, the kanjivaram denotes a special occasion and a feeling of festivity, bringing back memories of my childhood.
I love this exquisite Kanakavalli kanjivaram in shades of grey and blue. I think it’s modern with a traditional touch, which is how I would define my personality.
(Dr. Shanthipriya is wearing an elegant Kanakavalli kanjivaram in blue grey with blue checks on the body, and gold zari geometric stripes on the blue pallu)
- Dr.Shanthipriya, in conversation with Aneesha Bangera
View Dr.Shanthipriya's curation here