Of Love, Courage and Parkinsons

Of love, courage and Parkinson’s
Punam Khaira Sidhu

FIGHTING ODDS: Mohinder with her husband

The melodious notes of the harmonium waft to me in the wee hours. I could almost visualise the couple — Pritam Singh Kohli playing the instrument, and his wife of 50 years Mohinder sitting close by. Some days Mohinder, "Mindi" to her friends, appears quite normal, with just the slight tremor of her hands giving away her affliction but on other days she is rigid and incapacitated.

But the Kohlis’ routine remains undisturbed. Their life has fallen into a mellow pattern. P.S Kohli, a retired IAS officer who has been Advisor to three Punjab Governors, is today full-time caregiver and also part-time Sufi poetry enthusiast. The man who served as Consultant to the World Bank for agriculture and irrigation projects is now an unofficial consultant to others battling Parkinson’s disease like his beloved wife. But friends they were and friends they are, tranquil in each other’s company and in the ebb and flow of their daily routine.

Mindi, mother to four children, two boys and two girls settled in the US, was travelling in the US in 1992 when she first felt involuntary tremors, signalling the onset of Parkinson’s. Today the Kohlis are grateful for the early detection of the disease and administration of levedopa, the miracle drug which has substantially slowed down the spread the disease.

Parkinson’s disease is a neurological disorder caused by a degeneration of dopamenergic neurons that control normal movement. The early signs include resting tremor (shaking back and forth when the limb is relaxed) bradykinesia (slowness of movement), rigidity and postural instability. Some other common signs are shuffling gait, stooped posture, small handwriting, constipation, sweating, dementia, depression and muscular pain. Parkinson’s can also easily degenerate into Alzheimer’s, which results in impaired cognitive functions. And this is where Mindi emerges as a ‘poster girl’ for she has shown how early diagnosis, disciplined medication and strong will power can beat the odds against this degenerative disease. Post-retirement, the Kohlis settled in the US. Mindi underwent deep brain stimulation surgery (DBS) in Sacramento, California. The options at that time were between pallodotomy i.e. surgery to burn the damaged portion of the brain, an irreversible process, and the less effective but reversible DBS. In a 12-hour-long operation, surgeons drilled a coin-sized hole in Mindi’s skull, and stimulated her sub-thalamus with electrodes. These electrodes were inserted into the patient and connected to a power pack implanted under her breast. The battery life is three to five years like that of a pacemaker. Today, DBS is being done in India at AIIMS, Apollo and other advanced centres.

Mindi displays a streak of self-deprecatory humour when she says that like "Pyaar ke side-effects" the levedopa drug has a lot of side-effects too. These include nausea, digestive problems, depression and hallucinations. It was these hallucinations that brought the Kohlis back to India from the US. Mindi hallucinated and dreamt frequently of her brothers and parents. Ensconced in the protective warmth of family and friends, the Kohlis set about re-building their lives in India. Kohli, at his bureaucratic best, has actually maintained a diary recording his wife’s daily medicine schedule.

Chandigarh has a large number of people suffering from Parkinson’s but very limited medical resources to provide the specialised treatment this disease requires. The Kohlis are happy to volunteer information about resources required for battling the disease.

The Kohlis have lived their marriage vows`85 through health and through sickness. Their partnership of love and support serves as a shining example to couples in the present times when relationships are so quickly tested by minor hindrances.