The Falling Patient: Tribulations of Living with Progressive Supranuclear Palsy (PSP)

 

Tremors of the hand refuse to die

As the neurons in the brain cry,

My voice now thready and legs falter,

Evaluation forced, my life lay on altar.

Everyone worried about what may be,

No heed to my wishes what be.

 

The pleasant doctor smiled and greeted,

Emotions shifted as he examined and tested.

Convinced but needed to reassure,

Pulled from behind for a diagnosis allure,

Pull test positive¹, heard him say,

But for me, skies began to grey.

 

Look right, look left, up and down,

Obeyed but deep inside was meltdown.

Round the house², went my eyes

Excitement sparkled in his eyes.

Diagnosis for one is cerebral delight,

For other, withering away after blight.

 

 Hastily, a brain scan to be done,

Do more tests benefit me than stun?

The stamp of the diagnosis needed I assume,

More for the doctor or maybe my tomb?

Sun of the cheerful life has set,

Happiest hopes will be in debt.

 

Together we sail across, her touch ensured,

She held my hand, my tremors eased

Therapy, support, counsel and care

To guide and uplift, always there

Discussions evolved to white noise,

With PSP, stand with poise.

 

Tremor in my hand, I hold it near  

My companion for the past one year,

Closed my eyes, looked deep inside

Found more allies, I hold with pride.

I have embraced them, one and all

As we journey forth for the long haul.

 

Loneliness in the last lap, I do not fear,

Mind body and soul, forever near,

Understanding their hue and whisper,

As we gently drift into slumber.

For now, I embrace the nightfall,

Enthralling, as the last curtains call.

-            Jidhin Raj

 

 

 

 

 

References

 

1.                Hunt, A. L. & Sethi, K. D. The pull test: a history. Mov. Disord. Off. J. Mov. Disord. Soc. 21, 894–899 (2006).

2.                Quinn, N. The ‘round the houses’ sign in progressive supranuclear palsy. Ann. Neurol. 40, 951 (1996).

Life lessons from a leather bag

 

“Lemons or lemonade” was the first thought that raced across my mind as I stared at a screenshot of my email shared in Whatsapp. The story begins with the announcement that I had won prize in a virtual quiz held by a prestigious organization. I was thrilled and at the same time satisfied that my efforts didn’t go down in vain. After a week of suspense, I received the prize- a leather bag. It was a disappointing sight and the stink was abysmal. Even today this bag hasn’t been moved an inch from its place on my porch. This ruffled my feathers and I thought of emailing the administrator regarding its poor quality and how such prizes tarnish the image of the organization. I sent a strongly worded mail in the most polite manner and two days later I came to know that my mail’s screenshot is being circulated in the Whatsapp group of my professors and future recruiters. If the leather bag gave me a bad migraine, this gave me a thunderclap headache.

After this devastating twist of events I was informed that comments were pouring in either in support or criticism. I was dejected and was confused what my next step should be. Since I was playing chess with the devil* , it was necessary that my next move should be calculated and redeeming. Soon my professor received my call in his mobile screen and I explained my version asking him for word of advice. He heard it, thought for a second and told me,” Not everything in life requires a reaction. Some things are best left ignored.” After a few hours, the perpetrator himself deleted the post and the hatchet was buried.

* inspired from the famous painting “The Chess Players” by Moritz Retzsch

This incident taught me a few lessons which I felt are worth sharing

1.       Lemons or lemonade – life always throws us a surprise every now and then. This can look like a lemon at one time but later may turn out be a lemonade and vice versa. In this story getting the first prize was my lemonade which soon turned sour but it inspired me to write this piece.

2.      Consent and privacy- In the online space where forwards and shares occur in a whiff, consent cuts a sorry figure. When screenshots, personal messages are shared, the consent of the sender is neither thought about nor sought after. A personal message is meant to be personal. If it’s planned to be shared, prior permission should be sought also known as manners. In this incident, my personal mail shouldn’t have been shared without my knowledge or permission

3.       Every coin has two sides- in the era of online discussions and rebuttals, every issue will have its supporters and detractors and the majority decides the righteous of the matter. However if we can prove to do something without a guilty conscience (the third side of the coin) one shouldn’t be dejected

4.      Ignorance is a bliss- not every issue in life requires a reaction. Some things are best left untouched and time has a way of healing things. So give time some time to heal your wounds.

5.   Reflections- this is very true in the virtual world where screening/censoring measures are bare minimum. Our actions and comments should always reflect the person whom we want to project. In this instance, since my mail even though was strongly worded but not offensive, I was able to save my face even when the mail was widely circulated.

         dedicated to Dr A.A. Harris who helped me through....

 

 

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REFLECTIONS

 As i took the phone out for a selfie , I found my hair untidy with horny curls and mesmerizing eyes. My doppelganger smiled and blinked "-.. .. ."

Old man and his dentures

 

 During the BC (BEFORE COVID) era, Neurology OPD in our hospital was a busy place with patients flocking every nook and corner of the OPD .The doctor, on the other hand possessed only his table and chair as his own. As a first year resident I was usually the first among the doctors starting the OPD. At around 6 months into my residency, I started to notice an old man among the first patients sitting right in front of the doctors table. He looked cunningly cheerful and always flaunted a bright smile exposing his artificial dentures. As soon as I took my seat, he would give his opening statement, “why are you late doctor, we were waiting for a long time.” This was appreciated well by the audience around, by their smiles and giggles, elevating him to the status of the common man’s hero who had the steel nerves to question the authority. I would find myself in a pickle- without a comeback that’s strong enough to win the argument and soft enough not to ruffle his feathers. During history taking and examination, he would go about telling his experiences here. After I diagnose and prescribe, he would yield his killing blow,” doctor, have you prescribed costly medicines that are not available here?” this would again be rewarded with giggles and positive head nods. This was a common practice during his monthly visits. I would always reply his taunts with a helpless smile but the cauldron was boiling inside. When the first patient of the day destroyed you, it was usually difficult to continue the day on high note and this ended up spoiling my day.

 After the floods, when the OPD was slowing regaining its old strength, I kept searching for this old man among the patients, I wondered what had happened to him and whether he had relocated. I started looking for the man who had teased and irritated me but deep inside I missed his smile. I understood a doctor patient relationship had given birth during the chaos. It was about two months later when I gain saw him, a sight which filled in me with so much joy that his teases were actually like old friends pulling each other’s legs. He was keeping well but had to miss the appointments due to personal reasons. After his routine medications were written and before he could speak, I answered with a grin, “yes, all these medicines are available here.”

The unforgettable day came soon after when during our usual chit chat. He said,” Doctor, I come early because I want to see you and not any senior doctor. I am satisfied only after I see you and talk to you.” The same audience heard it, was astonished and their head nods had less vigour. That day was an eye opener for me. A patient whom I disliked, whom I considered as an irritable patient actually loved me a lot as a doctor. I understood that doctor patient relation is a sophisticated slow growing love which cannot be matched by money or rewards. Such relations have become sparse in this time due to unnecessary tangles of greed, legality and consumer mentality. I now understand that even though his dentures were artificial, his smiles were truly from the heart with an icing of warmth and love. Even though I frantically search for his face in the OPD during these Covid times, I am sure he will survive this pandemic and once again greet me with his smile and dentures