As I wake up on a Saturday morning, I was roused out of my blissful slumber and scout over to begin the weekend ahead with my family. Springing up to make some coffee, I dish out breakfast and we gather together for a happy, chatty meal as we discuss the exciting weekend ahead.
While many happy tales come in different stories, and sometimes with a bittersweet pill, not all play out the same. Some take a different turn. Sutapa Kasibhatla is a sprightly and a quick-witted mother of two sons. Although, she wishes for nothing more than to have a regular routine that we all enjoy. But this proves to be a tough hurdle for her everyday, as she battles Parkinson’s disease as a young mother. If she is able to move around to enjoy the little things in her kids’ lives, it is an accomplishment for Sutapa, who was diagnosed with Parkinson’s Disease when she was just 36. When she was diagnosed with the disorder in 2004, her kids were only 2 and 5.
“Parkinson’s is not a death sentence but a life sentence without parole”, Sutapa says, dabbling with her past while juggling her present.
Parkinson’s Disease is a disorder that affects the nervous system. It is a progressive disease affecting movement and can start as a slight tremor. While it mostly affects people over the age of 60, it can sometimes affect those much younger, taking a toll on their overall lifespan and health.
Anyone diagnosed earlier than 60 is said to have young onset Parkinson’s. Parkinson’s disease causes specific neurons in the brain to die slowly over time. These specific cells produce a neurotransmitter called dopamine, and this chemical messenger is sent to the part of the brain that controls coordination and movement.
April is pitched to be Parkinson’s Awareness month and the month sees many across the globe raise massive awareness and take to educating others around them of the condition that has afflicted Sutapa.
Born and raised in Hyderabad, Sutapa traces her roots to Bengal. Soon after her marriage, her family settled in the United States. A couple of years later, with two kids springing in the excitement to the young family, she was shocked to learn of the chronic Parkinson’s disease affecting her. Feeling adrift, she attempted bottling the fear, the helplessness and the uncertainty of her health and her future ahead – a future she had gazed at with so much ambition and drive.
As little girls, most women imagine their wedding days, fantasize about the kind of partner they will have and often decide how many children they are having, well before their time. They certainly don’t imagine that after achieving all these things, their life will be turned upside down by the devastating turn of events.
Parkie, as she satirically refers to Parkinson’s as, has taken away all sense of normalcy for their family, yet they keep moving along. Her older son, Rishab, had to write about who he admired most and his mother was the obvious choice.
“A special family member to me is my mom. She was diagnosed with Parkinson’s disease in 2004, so her life is much harder than the rest of us. It is as hard as a fish with no water. Her body can never stay in one place, she is always shaking, and sometimes she can’t even walk. However, she lives it to the fullest. She is really funny, and is always optimistic. That is what I admire about her. However, we do have to help her in parts of the day because she is shaking. This is because of the disease. This really limits her, and this is why we don’t really go on vacations that much. Life is hard, but my mom is really special to me because of the way she handles her disease. I also have to say that my dad is very special also, because despite of all the struggles we are facing as a family, he always keeps his head up and never gives up. That is why I admire my mom and dad and think they are special,” Rishab wrote in a note, describing his mother and her positivity in vivid detail to his fellow classmates at school.
On a hazy November morning in 2012, Sutapa underwent a massive brain surgery which sparked electric impulses to the brain by means of electrodes. A throbbing, nasty pain is often left behind after the procedure. Called a Deep Brain Stimulator surgery, Sutapa underwent an emotionally tumultuous time during the entire surgery and later, while she was recovering.
She shared the video of her surgery in a YouTube post:
She keeps smiling, sharing her “Sutapaisms”, as she calls them, on social media pages. Words of wisdom that keep her sane, or as she recently posted “Insanely sane or sanely insane”. Her husband often comments, “only you could laugh in your current situation,” but she feels she has to in order to keep going!
In an upbeat, yet moving post online, Sutapa exuded positivity and the joys in the simple things in life that matter.
An emotionally strong Sutapa posted a video reflecting the constant tumultuous days and feelings of strife amidst her days.
In my life
Posted by Sutapa Kasibhatla on Wednesday, March 1, 2017
When asked what she misses most, Sutapa, has a pretty long list. She has actually compiled her top 20. It consists of little things we take for granted everyday. However, what may seem small to us, is not small to Sutapa anymore. Something as simple as turning over in bed, or walking forward, are now struggles for this brave woman.
“It takes me 5 minutes to turn over and most of the time I’m drenched in sweat,” she tells us.
While she often approaches situations with humor, Sutapa is human after all, and has her dark moments. There was a time she contemplated ending her suffering, but the love of her family has kept her going.
“I will and I can because I am!”, Sutapa signs off confidently.
With the many joys and sorrows life has thrown her way, Sutapa has remained a true inspiration to so many, and hopes to continue helping the society and those who come her way!
To learn more about Parkinson’s disease you can go to: https://medlineplus.gov/parkinsonsdisease.html