Parkinson’s Disease: My Nemesis, My Teacher

Parkinson's Disease

Vivian Tellis-Nayak

Good morning, ProviderNation. Today’s guest blog is from Vivian Tellis-Nayak, a long term care researcher and professor who has struggled with Parkinson’s disease for a number of years. Through this and future installments, Tellis-Nayak describes his very personal struggle with the disease and the toll it has taken on his family and his ability to teach.

When PD gate-crashed into my life it did not waste time. Its devastation started on day one. Its goal was total surrender, and its strategy was rapid fire. Before I even thought of seeking medical help, PD had turned my world upside down. I was unnerved seeing my familiar world standing wrong side up. Weak-kneed and adrift in an unfriendly terrain, I slipped, staggered, and stumbled trying to meet my professional obligations that I had handled effortlessly just yesterday. My professor-student bond, among the most satisfying rewards for a teacher, began to congeal. Peer collegiality began to wilt, and with it the camaraderie and mental high-jinks I took delight in. My ties within the family and with friends outside were stretched and strained.PD turned my clock back. Mocking at my aspirations to be the kindly grandfather on the block, PD made me an infant and told me to start all over. I was to make sense of a world in shambles around me; I had to nurse my beaten ego. I had to salvage self image. All in all, an impossible mandate, enough to crush you into surrender and to make you slide into depression.And that is what happened.

Melancholia’s Drumbeat

PD snares 60,000 new U.S. victims each year and drags nearly half of them into depression. The learned ones tell us that PD depression is more likely to occur with an early onset age, with greater left brain involvement, and lower cerebrospinal fluid levels of 5-hydroxyindoleacetic acid; it precipitates greater anxiety and less self-punitive ideation.Simply put, you go nuts, when the chemical in your brain dries up and can no longer control the reward and pleasure centers.

I was relatively young and oblivious when PD sneaked in and began to play the reward-pleasure buttons in my left brain. I have lived by the dictum that biology is not destiny; I have bemoaned in written and spoken word that modern medicine too often discounts the human spirit and its power to transcend the frailties and limits of our body.

The pill, therefore, tasted bitterer when I learned that PD had broken through my spiritual barricades and had made me subservient to my errant body chemistry. PD had me prostrate, despondent, and melancholic. I felt numb, dull, and hopeless, unable to savor the joy of life. I withdrew into my shell, not wanting to venture out in an unkind world. When I went out, I felt eyes were turned in my direction. I thought I heard people talking, sotto voce, about my condition.My wife and I had for long anticipated our son’s graduation from Northwestern as a jazz pianist. That celebratory day, however, I woke up insecure and timorous, emotionally out of synch with my family and unconnected with friends who had come from faraway places to partake in the joys of the occasion. I tried my best; and all I could muster was weak, clammy handshakes and squeaky “Hellos.”None of us—family, friends, or I—had any inkling that PD was at the joysticks again gleefully tinkering with my life.  Melancholia stalked me through sleepless nights and joyless days. It kept up a relentless drumbeat: you cannot be you again, you cannot be healed.

Although demoralized and diffident, I acceded to my wife and accompanied her to a professional conference to present a paper we had co-authored. I stood in front of the attending scholars feeling vulnerable, with a vapid look, and drained of the last drop of the confidence of a seasoned author I displayed on such occasions.

I survived the ordeal only because at every punctuation mark I looked up and felt reassured by the subtle nods from my wife seated on the front row.

Tellis-Nayak speaks at the 2013 AHCA/NCAL Convention in Phoenix.

Tellis-Nayak speaks at the 2013 AHCA/NCAL Convention in Phoenix.

PD: An Acid Test

PD is at its vilest when it comes to personal relations. Very early, PD targets your strongest bastion of hope and support. It strains the marital bond and warps familial ties. PD, in fact, is an acid test of the resilience of family cohesion.

PD’s devilry sows mistrust and doubt; it rasps and grates on the family bond until it is raw and stretches it to its breaking point.

That sets up a depth charge, which creates new fissures and widens hidden family fault lines. Scars from long-forgotten intemperate words, resentments, and petty jealousies now fester again and prove fatal to all but the most robust relationships.  How many marriages, joyous unions, and liaisons have succumbed to the savagery of PD, I dare not contemplate.

I survived PD’s gauntlet of depression. My wife and I discovered that our mutual devotion had steel and stamina that we had not suspected. Although buffeted and bruised, our commitment triumphed over PD’s guile and sagacity.

We had sailed troubled waters before. Our two odd biographies racing on different trajectories had converged in a mixed ethnic marriage despite harsh reaction and punitive threats.

From that inauspicious starting line, our life together had been a sprint down an obstacle course. We have lived through social rejection, cultural contradictions, serious health challenges, and the frustrations of fostering17 children. None of these ordeals matched the fury and ferocity that PD directed toward us.

I count my blessings. The most precious of them is my partner in life, Mary, impossibly gregarious in nature, eternally sunny in disposition, and with a bit inflated can-do approach to life.

It is a favor from the gods that she is a gerontological nurse. She keeps me well fed on recipes she learned from my mother. She sees that I am attired and suited appropriately for the occasion. She fights off PD’s new incursions like a provoked lioness.

To be continued: Next month, Tellis-Nayak dives deeper into the toll PD has taken on his marriage and his family.

Vivian Tellis-Nayak, PhD,  is a senior research advisor at the National Research Corp., Lincoln, Neb. He has been a university professor, whose scholarly work has been published in national and international professional journals. He has conducted research in the United States and abroad, and his major findings have reached a wider public through his writings in trade magazines. Tellis-Nayak can be contacted at vtellisn@gmail.com.

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Filed under health care, Long term care

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