"A problem with Parkinson’s is the heavy medicines. The tablets have side effects in the long run" - Hari Prasad
As the disease progressed, the cramps and tremors increased so much so that by the end of the day, I would feel totally exhausted,’’ says Hari Prasad, trembling as he recalls the days when he would quiver like a leaf in the autumn breeze because of Parkinson’s disease.
Spring seemed far away. That didn’t stop him from making a bucket list. What topped the 56-year-old’s list was a road trip to Thimphu, the capital of Bhutan, dotted with Buddhist monasteries and shrines. But for a man who found it difficult to even cross the road and type on his laptop, it appeared a Himalayan task.
Prasad, who worked as senior executive in a multinational company in Bengaluru, was diagnosed with Parkinson’s in 2008. He experienced tremors in his left leg, which he mentioned to the neurosurgeon he met while seeking help for his father-in-law. The doctor suspected it was Parkinson's. “He spoke to my wife and advised that we should meet a neurologist at the earliest,’’ says Prasad.
Prasad went to Dr Guruprasad Hosurkar, consultant in the department of neurology at Columbia Asia Referral Hospital. He confirmed that it was indeed Parkinson’s. “Parkinson’s is a neurodegenerative condition wherein the neurons which produce dopamine break down, leading to movement disorders,” says Hosurkar. “Dopamine is the chemical which sends out messages to the brain regions involved in movement and coordination. Dopamine deficiency can cause symptoms like tremors, slowness of body movements and walking, decreased volume of speech, stiffness in the limbs with occasional pain, and stooped posture.’’
Prasad had some of the classic symptoms. His body had become stiff and he found it difficult to perform daily activities. He would get stuck in his flight seat or office chair, which was quite embarrassing for a man who led an active life earlier. When the condition worsened, Prasad took a break from work.
The exact causes are still not known. However, in certain types of Parkinson’s disease, some genetic mutations have been identified. Prasad wasn't sure if the disease runs in his family. “Once, while visiting a business associate’s office, I couldn’t hold the cup of tea. That is when I realised that I had ‘familial tremors’—involuntary shaking movement that tends to run in the family,’’ says Prasad. His paternal grandmother apparently had twitchy fingers. However, she died early, much before Prasad was born, and it was never diagnosed. The ‘familial tremors’, unlike Parkinson’s disease, is not an idle tremor [a patient may experience it while doing an activity whereas in the case of Parkinson's, the tremors are present even in the restive state], says Prasad.
After a thorough checkup, Prasad was put on medication. He followed the doctor’s advice to a tee. But the disease kept progressing. Gradually, his right arm and leg also got affected, altering his gait and slowing his movements. “I could not move around smoothly. The shaking of my head increased noticeably. My speech was slurred,’’ he says.
By 2013, the tremors increased and Prasad experienced painful stiffness in the limbs. His visits to the hospital became more frequent after he started experiencing wearing off—the effect of levodopa, a drug he took for Parkinson’s, diminished in a few hours and the symptoms reappeared before it was time for the next dose. The doctor had to keep changing the dosage and schedule of his medication. Even that didn’t help.
The family was also worried about the adverse effects of the medication. “One of the problems with Parkinson’s is the heavy medicines—3 to 4 tablets every two hours. These tablets generally have side effects in the long run,’’ says Prasad, who developed involuntary movement of the head and neck as a result of prolonged medication. His doctors were hesitant to increase the dosage any further.
The next best option was to go for deep brain stimulation. “The procedure uses a surgically implanted, battery-operated medical device called a neurostimulator,’’ says Raghuram G., consultant neuro and spine surgeon at Columbia Asia Referral Hospital. “The neurostimulator, which is similar to a heart pacemaker and approximately the size of a stopwatch, delivers electrical stimulation to targeted areas in the brain that controls movements. It also modifies the abnormal nerve signals that cause tremor and other Parkinson's disease symptoms.’’
In patients with Parkinson's, the electrode is inserted into an area called subthalamic nucleus in the brain.
Prasad underwent DBS in March, 2015. A small hole was drilled in his head through which the electrode was placed in his brain. He was kept awake during the surgery. The procedure, which cost Prasad Rs 9 lakh, improved his quality of life drastically. He doesn't have any trouble with balance now and no longer complains of stiffness associated pain. The gait has improved and the tremors have stopped completely.
DBS helps patients with Parkinson’s disease in many ways, says Raghuram. “The electrodes alter the electrical activity in the motor circuits in the brain. It helps in improving the movements and reduces tremors. The electrodes also reduce the side effects of medicines,’’ he says. “We generally recommend DBS for patients in whom the medicines are not as helpful as they used to be at the onset of the disease, and those who show unpredictable effects of the medicines or severe side effects.’’
Prasad is off medication now. With his life back on track, he embarked on a road trip to Thimphu on January 22 with his wife and another family. They covered more than 6,000 kilometres in 41 days. He caught up with some of his old friends during the trip.
Apart from sightseeing, Prasad used the trip to create awareness about Parkinson's. With proper medical help and exercise, a person with Parkinson’s disease could lead a normal life, he says.