It was early 2017. I was buying a bottle of perfume from a Delhi shop, when I noticed something odd. I tried to smell the ittar. But all I drew through my nostrils was a blank. “Is it very mild?,” I asked the shopkeeper. “No ma’am,” he replied, surprised. “You cannot smell it at all?” I told him probably I have a blocked nose, but had niggling doubts in my head.
A few months later, the junior doctor at a reputed neurological institute in Bangalore, filling up a long questionnaire, enquired, “can you smell”?
I was there to confirm my diagnosis as a patient of Parkinson’s Disease, the degenerative disorder that causes tremors, rigidity of muscles and movement problems, a few of which I was already experiencing. Doctors in my workplace Delhi and hometown Kolkata had told me I fall in the category of “Early Onset” patients (as PD is common among the elderly, but I was 39 then). They wanted me to start treatment, but I was hoping to get another opinion.
“No, I cannot smell, is it related to my condition,” I asked the doctor. Yes, she said. It is a common symptom.
Of course, though it explains how widespread the effect of PD is, loss of smell is only a minor part of the life-changing issues brought by the disease. Walking, sleeping, working, doing simple everyday chores – it turns simple things into a battle.
Initial years were somehow manageable, but now, after seven years, I am facing a range of problems related to PD, including frequent falls, resultant fear of falling, which is damaging my confidence to go out and freezing – when you are unable to take a step for several seconds while walking. The first years were also easier in terms of keeping the disease under check with medication. But now, much of my average day witnesses “off-periods” – when PD symptoms return due to effects of medicine wearing off. Life is increasingly becoming difficult.
Though there are times of despair, I don’t want to give up hope. Yet, amidst despair, hope persists. Sound medical guidance, daily routines, and practices like yoga and meditation provide solace. Support groups offer invaluable camaraderie, despite their scarcity in India. Reports of new research fuel optimism, while options like Deep Brain Stimulation (DBS) surgery loom as potential paths forward.
My takeaway from life after PD? Despite the struggles, kindness abounds. From strangers to healthcare professionals, countless individuals have extended a helping hand along this journey, reminding me that even in the face of adversity, compassion prevails.
(The writer is Young Onset Parkinson’s Disease (YOPD patient and working with a State Government)
