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Submitted by Rajeev K Gupta on 27 May 2018
Image of an older silver haired person thinking and a younger dark haired person in a blue shirt and white t-shirt sitting next to him and debating whether to share or not about Parkinson's Disease diagnosis

Rajeev, 56 has been diagnosed with Parkinson's Disease but is unsure of the reaction he will receive if he shares his diagnosis of Parkinson's with his social circle. What do you think he should do? 

Living in Dread

“Hey, WHAT happened to you? Are you all right?”, screamed my cousin Sony who met me after several years at a wedding. Gosh! The secret is out, I thought. “I am all right, why?”, I said, keeping up the charade. “You are too slow”, he was spot on.  Sony is a doctor and he should know. Fortunately, he let it go and we chatted about other family tit-bits. For the rest of the evening, he kept looking at me surreptitiously (or so I thought) making me feel nervous and self-conscious.

This was the moment I was dreading when I decided to travel to my home town for attending a cousin’s wedding. This was the last wedding from my generation of eighteen cousins from father’s side. I did not want to miss this. There was just one hitch -  what if they find out!

I don't want pity

One part of me cautions that hiding is going to be more stressful than revealing. But won’t they immediately put me on par with Gayatri Chachi Ji who had the very same disease and died recently after years of bed ridden immobility and suffering. They will pity me. They will sympathize. Worse; they will write me off.

I am just 56 and not willing to be written off. I will fight this. I shall fulfill all my worldly responsibilities. And how will my old parents take this! This will devastate them, shatter all their humble hopes. They have already suffered a lot. Why put them through this towards the fag end of their lives. I convince myself that I am hiding this for my parents and not for my own vanity. Deep down, I know I am living with half the truth.

Parkinson’s is not a disease that can be easily hidden. It shakes you up – body and mind. No mercy there. I am living with it for the last five years. In my case, there are no tremors. Mine is rigidity dominant. My left side refuses to move during ‘off’ time. People do notice. In social gatherings, at work place, at public places, my Bridge partners – people know something is not right. Some ignore, some stare and some straightaway ask. Frozen shoulder, some problem with the nerves, overworked in the gym --- anything goes. As long as the P word is avoided, it is fine. Anyway, who cares beyond a point. What about Mrs. Parvez who keeps lamenting her own two years old Parkinson’s; loudly proclaiming in the club that her worst enemies should not get this disease. She fondly calls me beta. Won’t she make me and my wife more nervous, more anxious through her fuss and sympathies. We can surely do without that. But, how long?

Pillars of courage

It is not a closely guarded secret. It cannot be. Immediate family, brothers, sisters, in-laws, close friends – all are briefed. There is tremendous support. Some pledge unconditional help, some extend courtesies such as offering to drive us home after a party, some show silent understanding by treating me normal even when the symptoms are pronounced. Other than delving into your own inner strengths, these are the pillars that give you courage. Ready to face the challenge. Life goes on and it is beautiful. It still is.

The dilemma

To choose the right time and stage in your disease cycle to let your wider circle know is a dilemma. It may be a nightmare. It may even be a relief – no more worries about leaving the Bridge table before the symptoms kick back in. Who knows?  Perhaps this does not deserve so much thought. Just let it flow.

I wish there was a map – a map for managing a major illness in all its multiple dimensions. I know there cannot be one that fits all.  One has to draw one’s own map. There may be pointers. There may be learnings from others’ experiences. Finally, each one to his own. I am still searching for my map – am building it piece by piece. Hope to share it one day - for fellow Parkinsonians to find their pointers.

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