Living with Parkinson’s: At 38, she dismissed a hand tremor, at 49, she can manage it with surgery

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When Prajakta More (name changed) first noticed a slight tremor in her hand at 38, she brushed it aside. A homemaker from Baramati, her life revolved around her family — managing the household, caring for her children and keeping pace with the constant rhythm of daily chores. But the tremor didn’t go away.“It started in my left hand,” she recalls. “I thought maybe I was tired or weak. But then it kept happening. Soon, stiffness crept in. Movements slowed. Tasks that once took minutes began stretching into hours. Something as simple as chopping vegetables or buttoning a blouse required effort and concentration. I realised I was not able to keep up with my own life,” she says.Now 49, Prajakta has spent over a decade living with Parkinson’s disease, a progressive neurological disorder that has reshaped not only her body but also her identity, her relationships and her understanding of life.Parkinson’s disease, which manifests when about half the nerve cells that produce dopamine die or become damaged, typically begins subtly, often affecting one side of the body. Tremors, stiffness and slowness of movement are among the earliest signs. In Prajakta’s case, the progression was gradual but relentless. “After a point, even walking felt slow. I would take longer to do everything. People noticed before I fully understood what was happening,” she says.Eventually, after multiple consultations, she was diagnosed with Parkinson’s.  What made her case unusual was her age as Parkinson’s is more commonly diagnosed in people in their 60s and beyond. But Prajakta was in her late 30s — a category doctors refer to as young-onset Parkinson’s disease. “Patients like her develop Parkinson’s decades earlier than usual,” says Dr Pankaj Agarwal, Director, Neurology, and Head, Parkinson’s and Deep Brain Stimulation Programme, at Gleneagles Hospital and a teaching faculty at K.E.M Hospital, in Parel, Mumbai. “In many such cases, there may be a genetic component. These patients have to live with the disease for a much longer time, which increases the likelihood of complications over the years,” he explains.How medication works in the early stagesFor Prajakta, the diagnosis was the beginning of a much deeper struggle. “I used to feel proud that I could manage everything at home. Slowly, I started depending on others even for small things. The shift was not just physical; it was deeply emotional. There were days I couldn’t even get out of bed without help,” she says. Her husband became her primary support system, but the change in roles brought its own challenges as he had to manage work at office and home.In the early years after diagnosis, medication helped. Like most Parkinson’s patients, Prajakta was prescribed Levodopa, typically taken as tablets sold in strips at pharmacies and can cost as little as Rs 100 to Rs 300 a month in early stages. Doctors refer to this period as the “honeymoon phase”, when symptoms are well controlled. “During the initial years, patients respond very well to medication. They can lead near-normal lives,” says Dr Agarwal.However, over time, the brain’s ability to respond to medication changes. “In later stages, the duration of benefits from each dose reduces. This leads to what we call motor fluctuations. Prajakta felt better for some time but then suddenly, her body would freeze. At times, she could barely move or speak and at times, increasing medication led to the opposite problem, dyskinesia, a condition of involuntary, uncontrolled movements, often seen as jerky or ‘dancing-like’ motions. This can occur in Parkinson’s patients as a side effect of the long-term use of Levodopa,” he explained.Story continues below this adBy the time Prajakta sought specialised care in Mumbai, her condition had reached what doctors describe as advanced Parkinson’s disease. “When she came to us, she had significant motor fluctuations and dyskinesia. Her symptoms were no longer adequately controlled with medication alone,” says Dr Agarwal. At this stage, doctors begin to consider advanced therapies, and one such option is deep brain stimulation (DBS).Also Read | Feed your brain from the gut: Why mapping gut microbes may help track Parkinson’s, Alzheimer’s earlyAn intervention that gave reliefDBS is a surgical procedure used in selected patients with advanced Parkinson’s. It involves implanting electrodes into specific areas of the brain that control movement. These electrodes are connected to a small device implanted in the chest, similar to a pacemaker. “The device sends continuous electrical impulses to regulate abnormal brain activity,” Dr Agarwal explains, describing it as a “brain pacemaker.”“It does not cure Parkinson’s or stop its progression, but it can significantly improve symptoms like tremor, stiffness and slowness, and reduce the need for frequent medication. The effects are adjustable and even after surgery, we can fine-tune the stimulation based on the patient’s symptoms,” he adds.While medication for Parkinson’s is relatively affordable, advanced treatment like DBS is not. In private hospitals, it can cost anywhere between Rs 12 lakh and Rs 20 lakh, depending on the type of device and hospital setup. “Insurance can cover a significant portion of the cost in many cases but the coverage under government schemes is still evolving,” says Dr Agarwal.Story continues below this adAfter the surgery, Prajakta could feel the difference within a few weeks as her movements improved, stiffness and shaking reduced. Her medicines were reduced too. Now she continues regular follow-ups. Dr Agarwal says that DBS requires periodic adjustments, a process known as programming. “We fine-tune the device based on symptoms. Patients may need adjustments over time.”Managing Parkinson’sDespite advancements in medical science, Parkinson’s remains incurable. Dr Agarwal says that there is still no treatment anywhere in the world that can reverse or stop the disease. The focus, therefore, is on management of the disease through lifestyle, balanced diet, good sleep and regular exercise. High-fibre diets can help manage constipation, a common symptom. Sleep disorders, including rapid eye movement (REM) and sleep behaviour disorder, are also common and require attention. “Consulting a movement disorder specialist helps optimise treatment and identify the right time for advanced therapies,” he says.