Raising My Game Against Parkinson’s

Pramesh Ratnakar, English professor, author, and third generation patient of Parkinson’s Disease, rues the absence of a cure, discusses Eliot and Homer in class to overcome Covid adversities and duels unrelentingly and imaginatively with the neurological condition. Plus a reflective poem by Ankur Bashar, his student and film maker who also made the film "The Invisible Enemy".  

Who am I?

My name is Pramesh Ratnakar. I am 64 years old. Many people call me a maverick for my iconoclastic spirit and unconventional thought processes. I love it!

I have been a teacher all my life. I teach literature to undergraduate students at the University of Delhi.

I have written books. One of them is Centurion – The Father, The Son and The Spirit of Cricket. It is a fanciful journey with cricket legend Sachin Tendulkar interspersed with philosophical dialogues with his father.

I am a patient of Parkinson’s Disease (PD) since age 54. Since my diagnosis I have been fighting a fierce battle with my illness which is treacherously trying to slow me down. But I am trying hard not to give up and lose. In 2016 , All India Institute of Medical Sciences (AIIMS) asked me to make a video presentation to inspire persons with Parkinson’s. That was my first effort at communicating my personal approach to slowing down progress of the disease. I realized that I have something important to get across to the PD community. So I have worked on many videos since then. Since 2016, I have shared my message with the community.

My initial symptoms

Actually the early signals of Parkinson’s start rearing their head much before the full-blown symptoms creep in. I started with frozen shoulder which troubled me for long. But once it was set straight, it was forgotten. My first identifiable symptom was foot-drag. I began to shuffle on my feet instead of walking smoothly or normally. Second, which was a bigger hint of Parkinson’s was my handwriting going for a toss. I noticed I was losing control of my hand. My handwriting was becoming a scrawl. That was a big problem. I began exercising my hands, elbows, wrists, palms. I even picked up those books where you practice writing as a kid. Earlier, I was in the habit of writing a lot. I used to always write things and then type it out into computer. But as my handwriting became slow, sluggish and unclear, I just didn’t feel like writing. I stopped writing altogether.

Parkinson’s mindset

Parkinson’s is one of the most horrible diseases ever. It wrings you out very slowly. I would define it as ‘acceleration of mortality through de-acceleration of movement.’ My engagement with Parkinson’s has enabled me to engage with mortality in a big way. Parkinson’s has given me a perspective on mortality on disease, , and I want to share my experience , and what I've learned from it about overcoming negativity.

Family background

My wife Sonya (Ghosh) and I met in college and we have been married for long. She is one of the foremost animal rights activists in the country and like me, she also teaches literature to undergraduate students at the university of Delhi. We have no kids. I don’t have to worry about what happens after me.

Family history of Parkinson’s

Parkinson's has been around in my life for long. I must have imbibed a great deal about the disease, unconsciously and consciously, because my grandfather and father had Parkinson’s. I was the chief caregiver of my father, after my mother passed away. My grandfather helped set up a medical college. Even then there was no help available to him at the end. He was very sad. No doctor would visit him in his final stages because nothing could be done. These are stories that haunt you.

What angers and worries me that for three generations the scenario remains the same for Parkinson’s. Things haven't changed. Nothing seems to be evolving or changing in the management of Parkinson’s in the medical field. You wonder whether the scientific community is doing enough, whether they're asking the right questions. Perhaps they need to go back to the fundamentals.

Covid and online classes

The very first work in the western literary canon, Homer’s ancient epic narrative The Iliad deals with plague, illness, and adversities. We've been dealing with issues such as the pandemic, as a cultural phenomenon, and a literary phenomenon in different ways. But when the real thing unfolded, when Covid unravelled before us, it was uncanny how that changed the way I taught The Illiad. As we switched to online classes, the pandemic opened up conversations about diseases, and how to cope with them. The class started discussing health issues and talking about tackling not just the disease but what the disease does to us inside our heads.

I dealt with the first wave of the pandemic and quarantine much better than I did with the third. Earlier I was still able to fight back and come up with ideas and thoughts. But during the third wave the fatigue has drained us out. TS Eliot’s poem, “The Waste Land” seems to have come alive. It is very difficult to deal with Covid devastation all around. And when you have Parkinson’s, it makes it much worse.

Overcoming fear

Now, post Covid I am beginning to worry about so many more things I shouldn't be worrying about. I know what is in store for me. I have to plan ahead. But it is tough to plan ahead. You have to factor in the negative consequences and the deterioration that will take place. It can be depressing. I fear the future. It is not fear in the head. It is an emotional, intellectual, psychological fear. When things go wrong and the going gets rough, the despondency of Parkinson’s rushes up. You have to keep dismissing it from your mind and force yourself to tread ahead. I think that's why I'm so desperately trying to be very physical and proactive. I believe if I stay very active, positive and energetic, then it will help me slow down progression of the disease and maybe help me cope with the off periods better.

Importance of staying positive

When you're under stress, the effect of your medicine reduces significantly. Both mind and body worsen with stress. In all my videos and interviews, I keep reiterating the importance of positivity, pumping up feelings of staying afloat. I treat Parkinson’s as a game, a challenge of movement, a sport in which I have to keep a safe margin from my opponent and steer clear of all match points. Therefore, I do all I can to arrest the progress of the disease. I ‘will’ my movement to play golf, lawn tennis, table tennis, badminton, I do yoga, to rediscover my body and I use my imagination to try and come up with solutions to the debilitating challenges of Parkinson’s. The idea, very simply, is never to throw in the towel. And I have tried my best to encapsulate this philosophy and outlook, this playful seriousness, and motivate my fellow patients and my students.

My motivational mantra is – preserve a positive way of life to better deal with Parkinson’s Disease. 

(Continued below the video link)

Sometimes I feel I've created an approach of handling Parkinson which is kind of different – and effective. I mean, I can still walk the mountain trails, and hold my own on the fairway, playing with some very good golfers.

At the end of the day, it is a very simple equation. If you cannot beat Parkinson’s, then you can raise yourself above it and make sure that it does not beat you.

Ankur Bashar, a filmmaker and Pramesh's student has created the video "Pramesh Ratnakar's Take On The Invisible Enemy, shared the poignant poem below: