Murukkumpuzha

Above the sound of the call to prayer in Murukkumpuzha, a group gathers and chats in the public library on the second floor. Wednesday is outpatient day and those who can climb the stairs come and visit with the Pallium team– nurse, doctor, social worker and volunteer. Here, they will get an assessment of their social situation, their symptoms and refills of their medications.

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Sarath takes a social history

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Dhanya, a geriatric trainee, looks up during a break

Many healthy appearing women are in clinic on this day. Their husbands or fathers have been injured through accidents either in India or in Gulf countries. Or the menfolk have had strokes and cannot make the trip to clinic. The women serve as “proxies”—reporting symptoms and getting some support for the hard work that they do at home, in addition to their wage earning jobs.IMG_5319

The volunteer, Francis Ernest, bustles about the library , answering his cell phone and talking to patients and families while they wait. About 8 years ago, he retired from his

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Mr. Ernest

government job. In retirement, he saw a need for a community organization to meet the health needs of home-bound patients. He asked Dr. MR Rajagopal, the Chairman at Pallium India for some training for 20 interested community members. At Pallium India, the volunteers receive training to be the case managers and frequently the first contact for patients and potential patients in the community. They learn to do follow up for patients who are seen in clinic, receive referrals for Pallium India, and do initial visits after referrals.

Those 20 volunteers, under the leadership of Francis Ernest and Patricia Paul started the SNEHA Palliative Care Society for Murukkumpuzha. “Sneha” means love in Sanskit, very close to the word in Malayalam for love-“sneham”. Now, 8 years later, 4-5 of the original volunteers are still strongly involved.

There was another striking part of this morning’s clinic. A quiet and dignified man sat in his dhoti next to his daughter waiting for his turn to visit with the doctor. His diagnosis is motor neuron disease, which is amyotrophic lateral sclerosis. (I wondered how he possibly made it up the flight of stairs). He was having increasing problems with swallowing and has some regurgitation through his nose. He was losing weight and feeling short of breath. His fingers were developing contractures. He had pain. His daughter, a nurse, elaborated on his narrative. Everyone listening, including this patient with his erect posture, knew that his disease was progressing. Pallium India provided medications for his pain and shortness of breath and he and his daughter went down the flight of stairs…slowly.

My admiration may have ended right there for this patient, except that I peeked out of the second story window and saw him climbing on the back of his daughter’s scooter, his contracted fingers on her shoulders. They must have felt me looking, because they looked up. My hand went to my heart-and we smiled together. They seemed to enjoy my surprise. A week later, he is still in my heart.

And for your eye candy…

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Black pepper roasting in the sun at the side of the road

Sindhu

Sindhu is a mother of one who fell into a well about 7 years ago and developed weakness in the lower extremities. She had tried using arm crutches but found it was not functional for the distances and given her need to have free hands to do her housework. Amazingly, due to the work of a volunteer physiatrist (rehab doctor) and his colleagues, her kitchen and bedroom has been adapted to her use.

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Sindhu at her wood stove

Until recently, this was her wheelchair:

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Due to the generosity of Vince Wolrab and Jason at JVA Mobility (this link will allow you to thank them), Sindhu received a narrow manual wheelchair with removable arm rests and foot rests, and a seat cushion that will certainly make a difference to prevent a pressure sore. (She has already healed one already). Here is the first transfer with an extra hoist to get over the back wheel:
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Here is Sindhu saying thank you (pronounced na-KNEE) in Malayalam and in English:

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Guess who tried NOT to cry when she blew me a kiss at the doorway.
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And thank you to Sr. Aswathy for sitting in the way back of the van with the wheelchair and the suitcases full of supplies.

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And here is your moment of Zen:

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“Abu has salt and matches for leeches” and other great moments from India

As many of you know, I have just converted today from University of Iowa Winterim India professor for 15 health science students to “senior consultant” for Pallium India. I was glad the conversion happened over 2 days—two students had later flights and stayed for an extra 24 hours.

The trip was full of cultural immersion moments—travel under other circumstances has never provided me with such an intimate look at the way people truly live, the depth of professional relationships, the abandon of meaningless clutter in my life, and the understanding that compassion can be conveyed without language. I believe that the UI students found this to be true as well. While I am more reserved and an observer, there were students were willing to jump in. We all moved out of our comfort zone. And sometimes the students pushed me out of my observer status with good results!

Two students and I went to the Lotus Ashram here in the outskirts of Trivandrum.
We thought it would be a beautiful place to spend about 45 minutes or so. TWO hours later, we left our personal tour feeling challenged to think about our lives and the chaos in this world and its man-made religions.   We had a short audience with the guru, an unexpected event, and quite moving.
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We enjoyed the peace and quiet of the ocean in a sea side family owned resort afterwards. I am still trying to finish God of Small Things by Arundhati Roy.

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Jesteny and Midnight

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Mara and the fishing boat

IMG_5308 (1)About the leeches…Jo Eland, my co-teacher sent me that text when we were on our way to a hike to a waterfall. None of us bathed long in that fresh water.   We loved the views from Ponmudi in the foothills of the Western Ghats.

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Jet lag

15 students and 2 professors from the University of Iowa have shared the experience of jet lag, a condition that occurs when there is rapid travel over many time zones. We have traveled across 12 time zones and from Iowa to Thiruvananthapuram, in Kerala, a state in the southwestern corner of India.

Why might it be important for professionals in health care to experience jet lag? It is the only time that healthy people will experience the disorienting effects, loss of circadian rhythm, malaise, and total bodily dysfunction of people with serious illness.

Let’s look at the similarities between jet lag and the malaise of chronic illness:

Loss of control

Mind fog

Sleep disturbance

Change in bowel habits

Mild nausea

Headaches

Disorientation

Anorexia

The students described what they have been feeling:

“My head was foggy, my temper was running short, I couldn’t concentrate, my bowels seemed to have stopped working, I was bloated, had no appetite, and my body suddenly felt like it weighed 400 pounds.”

I also felt disoriented as to what time it was. I had a hard time focusing on conversations and thinking straight.  I went to sleep around 6 pm and woke up at midnight thinking it was morning.

…it felt like there was a cloud or fog over my brain and I could tell it had affected not only my memory but also my personality and mood. The tiredness has led me to feel little emotion, for about 24-36 hours .

In an abstract presented at the ASCO Palliative Care in Oncology meeting in November, researchers measured circadian rhythm disruption in patients with metastatic colon cancer to determine if symptoms were more prevalent in patients with disrupted sleep cycles. Half the patients had disruption of their sleep cycles and those patients had more prevalent fatigue, anorexia, pain and appetite loss.

The students claim that they are over their jet lag. Not so, for this professor. I am relieved that this is temporary. Having these symptoms makes me aware of  the types of distress our patients have with little hope for relief.

And now for your moment of Zen…from today’s home visits:

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The nearby school goes on recess as we are passing through by car.

 

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Eating curries in the traditional way..

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Wood is used for cooking where there is no electricity