By Arunima Rajan

India is ageing fast, and with that comes tougher realities for families caring for serious illnesses like Parkinson’s. Nuclear households in metros and smaller towns alike are finding it increasingly difficult to manage an elderly parent’s care when specialists, speech therapists and physiotherapists are hard to access. As if that were not enough, add in factors such as air pollution and pesticide exposure, and the burden multiplies.

So what can families do when expensive options such as deep‐brain stimulation (DBS) or Parkinson’s-specific physiotherapy are out of reach? In a detailed conversation with Dr. Soniya Tambe, neurologist of Kauvery Hospital, Bengaluru, we explore the caregiver crisis facing thousands of households today.

What is Parkinson’s in simple terms? Many people think it's genetic or due to lack of dopamine. Can you explain it simply?

See, our brain has dedicated sites for each and every function that happens in our body. So imagine movement being done by the brain. It requires the cerebral cortex to initiate that movement, and it requires some other neurones to control the speed of movement, range of movement, and fluidity. Just imagine that there is a car and then there is engine oil. That engine oil is very important for the car. Without engine oil, your car will become slow, shaky and cranky. Similarly, your brain requires dopamine for movements to happen smoothly.

Dopamine is produced by some specific nerves called striatal nerves in the deeper part of the brain. It doesn't start the movement, but once the movement is started, it helps the movement to be done smoothly at a particular speed and range. Without that dopamine, a person with Parkinson's becomes very slow, shaky and starts to develop hand jerks and many other symptoms.

Earlier people thought Parkinson’s happens at 60 or 70. But now even people in their 30s, 40s or 50s get it. Why is this happening? Are there different types? What is the difference between Parkinson’s in seniors and younger people?

The age cut-off we usually take to call it young-onset Parkinson’s disease is between 40 to 45 years. The incidence of Parkinson’s increases every decade once someone crosses 60 years. Idiopathic or classical Parkinson’s happens due to dopamine nerve degeneration and usually happens after 50–60 years.

Very rarely, less than one or two per cent start developing this condition in younger age. That is called young-onset Parkinson’s disease. In young people, we do specific tests to check for genetic conditions, toxins, or medicines causing the problem. In older people, we mainly consider it an age-related disorder.

What is the incidence of Parkinson’s in India? Is it a major condition? Why doesn’t policy focus much on it?

There is no single number across all age groups for Parkinson’s. People above 60 — 10 per cent of them are at risk. Those above 70 — 30 to 40 per cent. As age increases, incidence increases much faster.

Yes, numbers are under-reported because many do not know what it is, and in rural areas it is even more under-reported. Policy struggles to focus on Parkinson’s because we are still struggling with common conditions like stroke, which affects more than 10 per cent of the population. Parkinson’s is less common in general population, so the struggle is more.

In above 60 years, incidence increases anywhere between three to 10 per cent depending on risk factors.

How do you diagnose Parkinson’s? What tests are needed? What symptoms should people look for, since ageing also causes slowness?

Diagnosis is mainly clinical. Neurologists examine the face, blink rate, facial expression, hand and limb movement, rigidity, finger-tapping test, range and speed of movement. Patients are asked to walk to assess steps, speed, balance, and associated movements.

MRI brain is done not to diagnose Parkinson’s but to rule out stroke, tumours, infections or other problems.

There is a dopamine scan (like PET scan) which shows dopamine uptake. If uptake is low, it means Parkinson’s disease. It is not used commonly, only in specific scenarios.

Motor symptoms include:

Resting tremor (shivering when not using the hand), also called pill-rolling tremor.
Facial expression becomes robotic, eye-blink rate reduces.
Slowness, jerky movements.
Imbalance while walking.

Non-motor symptoms include:

Speech problems because speech muscles lose coordination.
Loss of smell (anosmia) which may appear before Parkinson’s.
Restless Leg Syndrome.
Memory problems, emotional problems like depression, anxiety, psychosis.
Sexual dysfunction.
Bladder and indigestion problems.

Is there any preventive test for Parkinson’s if someone in the family has it?

None of the tests in research have been formally approved. Diagnosis is mainly clinical. Preventive testing is not available.

What are the treatment options? Are medicines the main option? What about DBS or radiosurgery?

If symptoms do not affect daily living, reassessment is done after three months. If they affect activities, medicines are started.

Most common medicine is levodopa, which converts to dopamine in the brain. Other medicines are dopamine agonists. Associated symptoms (urine, constipation, psychosis, depression, sleep) are treated separately.

Atypical Parkinson’s or Parkinson’s plus disease does not respond to these medicines.

As disease advances, dopamine works less effectively. Patients develop motor fluctuations. Then deep brain stimulation (DBS) is considered.

DBS places electrodes inside the brain and a stimulator under the skin. It stimulates neurones at particular frequency and duration. It reduces symptoms; medicines still continue, but dosage may reduce. It requires careful selection, no psychiatric symptoms, dopamine-responsive disease, proper pre-surgical evaluation.

Apomorphine injections are used as rescue medicines or continuous infusion, similar to insulin in diabetes.

Radiosurgery and ultrasound techniques exist but are not very common.

Why do many patients not opt for DBS? Is there not enough safety data?

Patients are very scared of brain surgery. Second, DBS is extremely expensive. In government centres, waiting periods are long. In the private sector, cost is very high.

DBS cost in Bangalore is 20–25 lakhs. Battery lasts 5–8 years and replacement is costly. Regular follow-up is needed.

DBS is done only by neurosurgeons and neurologists with special training. Selection of patients must be very specific. Even with correct selection and procedure, some patients do not benefit — this happens in every condition.

Is there a shortage of specialists for Parkinson’s in India?

In urban areas, no. In smaller towns, yes, there is an issue with access. Neurology is vast, and subspecialty training is needed for DBS and advanced Parkinson’s care.

What can families do if surgery is not an option? What are essential non-medical supports? Physiotherapy? Home modifications?

In early Parkinson’s, physiotherapy is helpful. In advanced disease, physiotherapy is less important.

Two major risks: falling and injury.

Recommendations:

House should be well lit.
No dark corners.
Doors should be wide.
Use rails and handles generously (toilet, bed, common area).
Reduce clutter: no mats, stools, decorative floor items.
Use stair-chair escalators if needed.

As disease advances, patients may have swallowing, speaking, memory and behavioural problems. Caregiver burden is very high. Costs are high.

Home-care groups can provide nursing care, physiotherapy, rehabilitation, speech therapy. Use hospital-type beds, air beds, urine tubes, nasogastric tubes, or gastrostomy when swallowing is not possible.

Common causes of death are trauma from falls, lung infections due to improper swallowing, and urinary infections and bedsores.

Support groups in India are very limited and not fully functional.

Is there any connection between diabetes and Parkinson’s?

No direct connection. But uncontrolled sugars add to diabetic neuropathy and make symptoms worse. Men are at slightly higher risk. Rural background and pesticide exposure slightly increase risk. People who drink coffee are at slightly lower risk.

What about nutrition for Parkinson’s patients?

General balanced diet. When swallowing problems appear, semi-solid food is recommended. Avoid runny food or water — use liquid thickening agents to prevent aspiration into lungs. Protein and nutrition have to be taken care of. If swallowing becomes impossible, nasogastric tube feeding or gastrostomy tube is used. Saline cannot provide necessary nutrition.

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