My Dad Has Parkinson’s & Our BOL is Made Up of Signs and Gestures

After Parkinson’s stole his ability to be quick with words, Anna now often communicates through facial expressions.

When people ask me, "What is your mother tongue?", I say Kannada. But that is not true. If mother tongue refers to the language I grew up speaking, then my mother tongue is English (I duck to avoid the imaginary spears of anti-nationalism being flung at me as I write this!)

My father was born and brought up in Tamil Nadu and hence reads, writes, and speaks Tamil fluently. He learnt English in school, Malayalam when he was posted in Kerala, and Hindi, when he was required to pass a mandatory Hindi test to get a Central Government job in the '50s / '60s.

My mother was born and brought up in Delhi and hence was fluent in Hindi.

As we are Kannadiga Madhwas, we all speak Kannada (me haltingly, often searching for words in desperation!) Most of the time, I speak with Anna in English, our primary language of communication.

I learnt Hindi only when I was 9 or 10 years old. Till then, Hindi was limited to the Bollywood songs my mother listened to on the radio. At that time, we thought our father spoke great Hindi (it sounded so much like the songs we heard!) We still laugh when we think of how impressed we were when Anna said, "कलम में स्याही है" ("There is ink in the pen") – his earliest recollection of learning Hindi was not the alphabet but this sentence. It was only much, much later that we realised that Anna's Hindi was South-Indian accented with a very limited vocabulary.

A Language of Gestures and Facial Expressions

Anna has a great sense of humour, and is a master of the art of quick repartee. This is not just the pride of a daughter you are reading, but something you will hear from almost anyone who meets him.

Before Parkinson’s Disease and Dementia stole his ability to be quick and nimble with his words, Anna was the centre of attraction wherever he went. Whether the gathering spoke English, or Kannada, or Tamil, if you heard laughter, you were sure to find my father holding court! Parkinson’s Disease and Dementia now lets us experience only a small percentage of his wit and repartee (as you may have gathered from my blog-stories at Parables of a Parkinson’s Patient). But it is still there, and it is still communication, whether in English or Kannada or Tamil.

Where once our language of communication was words strung together in any which way we pleased, we now often speak gestures and facial expressions. A language that involves more than a soupçon of detective work based on a long relationship of shared experiences and oft-repeated stories.

I now hear Anna tell me of his pain in a frown, or his confusion in the wrinkled lines of his forehead. I see his happiness in his toothless smile and his childlike excited chatter in the twinkling of his eyes. I hear him struggling to find the right words in his tired frown and the slight upward movement of his pupils.

I know he is asking for his head to be scratched when he repeatedly tries to raise his fingers to his scalp. A half-raised arm means he wants to wipe his nose or the drool from the side of his mouth. I can now distinguish a Parkinson's-induced twitch of a hand from the gesture that points to an object to ask what it is. I know he is stiff when I can see his weakened muscles strain under his paper-thin skin. The slight shifting of weight from one buttock to the other tells me that he wants his back rubbed or scratched.

A lot of our language of communication are these long-duration macro / micro-expressions. A language I have learned without any formal training, and one that I am teaching his attendants.

This new language is not my mother tongue but is starting to feel just as familiar.

There is no appropriate name for this language – perhaps we can create one!

Do you have any suggestions?

(After working in corporate India for over 29 years, Sangeeta has taken time off to look after her father, who was diagnosed with Parkinson’s Disease in 2008. Sangeeta hopes that these authentic stories will help patients and caregivers understand and appreciate the impact of Parkinson’s Disease. You can follow Sangeeta’s blog here.)

(We all love to express ourselves, but how often do we do it in our mother tongue? Here's your chance! This Independence Day, khul ke bol with BOL – Love your Bhasha. Sing, write, perform, spew poetry – whatever you like – in your mother tongue. Send us your BOL at [e-mail] or WhatsApp it to 9910181818.)