At the age of 38, Prajakta More (name changed) first experienced a slight shaking in her hand, which she initially dismissed as a sign of fatigue. A homemaker from Baramati, her life was centered around her family, juggling household responsibilities, caring for her children, and managing daily tasks. However, the tremor persisted.
“It started in my left hand,” she remembers. “I attributed it to being tired or weak, but the tremor continued. Soon, I began to notice stiffness. My movements slowed down, and tasks that used to take me mere minutes started consuming hours. Even simple activities like chopping vegetables or buttoning a blouse became challenging and required considerable effort. I realized I was struggling to keep pace with my own life,” she reflects.
Now at 49, Prajakta has spent over ten years coping with Parkinson’s disease, a progressive neurological condition that has altered her physical capabilities, her identity, her relationships, and her perspective on life. Parkinson’s disease typically arises when approximately half of the dopamine-producing nerve cells are damaged or die, often beginning subtly and affecting one side of the body. The initial symptoms include tremors, stiffness, and slower movements. In Prajakta’s case, the deterioration was slow but unyielding. “Eventually, even walking felt laborious. I took longer to accomplish everything. People around me noticed changes before I fully grasped what was happening,” she recounts.
After numerous consultations, she received a diagnosis of Parkinson’s, a condition that is often identified in individuals aged 60 and older. Prajakta, however, was only in her late 30s, placing her in what medical professionals refer to as young-onset Parkinson’s disease. “Patients like her develop the condition much earlier than typical,” explains Dr. Pankaj Agarwal, Director of Neurology and Head of the Parkinson’s and Deep Brain Stimulation Programme at Gleneagles Hospital, also affiliated with K.E.M Hospital in Parel, Mumbai. “In many situations, there may be a genetic factor involved. These individuals will live with the disease for a much longer period, increasing the risk of complications over time,” he elaborates.
For Prajakta, receiving the diagnosis marked the onset of a profound struggle. “I used to take pride in managing everything at home. Gradually, I found myself relying on others for even the smallest tasks. The change was not solely physical; it was deeply emotional. There were days I couldn’t even rise from bed without assistance,” she shares. Her husband became her main source of support, but this shift in their dynamic presented its own set of challenges as he juggled responsibilities at work and home.
In the initial years following her diagnosis, medication proved helpful. Like many patients with Parkinson’s, Prajakta was prescribed Levodopa, typically available in tablet form, costing between Rs 100 and Rs 300 per month during the early stages. This phase is often referred to as the “honeymoon phase,” characterized by effective symptom management. “In the early years, patients typically respond well to medication and can lead nearly normal lives,” Dr. Agarwal notes.
However, as time passed, the brain’s responsiveness to the medication diminished. “In later stages, the duration of relief from each dose decreases, leading to what we term motor fluctuations. Prajakta would feel better for a while, but then her body would suddenly freeze. Sometimes, she struggled to move or speak, and at other times, increasing her medication resulted in dyskinesia, which involves involuntary, uncontrolled movements that can appear jerky or ‘dance-like’. This is a common side effect of prolonged Levodopa use,” he explains.
By the time Prajakta sought specialized treatment in Mumbai, her condition had progressed to what doctors classify as advanced Parkinson’s disease. “When she arrived, she exhibited significant motor fluctuations and dyskinesia. Her symptoms were no longer adequately managed with medication alone,” Dr. Agarwal states. At this point, advanced treatment options were considered, including deep brain stimulation (DBS).
DBS is a surgical intervention designed for select patients with advanced Parkinson’s. It involves placing electrodes in specific regions of the brain that regulate movement, which are connected to a small device implanted in the chest, akin to a pacemaker. “This device emits continuous electrical impulses to normalize erratic brain activity,” Dr. Agarwal describes, likening it to a “brain pacemaker.”
While DBS does not cure Parkinson’s or halt its progression, it can significantly alleviate symptoms such as tremors, stiffness, and slowness, while also reducing the frequency of medication needed. The effects can be adjusted, and post-surgery, the stimulation can be fine-tuned according to the patient’s symptoms,” he adds.
Although Parkinson’s medication is generally affordable, treatments like DBS carry a hefty price tag, ranging from Rs 12 lakh to Rs 20 lakh in private hospitals, depending on the device and facility. “Insurance can cover a substantial part of this expense in many instances, but the extent of coverage under government schemes is still being developed,” notes Dr. Agarwal.
Following her surgery, Prajakta began to notice improvements within weeks, experiencing enhanced mobility and reduced stiffness and tremors. Her medication dosage was also decreased. She continues to have regular follow-up appointments. Dr. Agarwal mentions that DBS requires ongoing adjustments, a process known as programming, where the device is calibrated based on the patient’s evolving symptoms. “Patients may require modifications over time,” he explains.
Despite advancements in treatment, Parkinson’s disease remains incurable. Dr. Agarwal emphasizes that no existing treatment can reverse or halt its progression anywhere in the world. Consequently, the emphasis is on managing the condition through a balanced lifestyle, nutritious diet, adequate sleep, and regular physical activity. High-fiber diets can assist in alleviating constipation, a frequent symptom, while sleep disturbances, including rapid eye movement (REM) and sleep behavior disorders, are also prevalent among patients.
