26 September 2011
Anand Sagar has been living with the degenerative disorder for 14 years, and though he can’t beat it, the symptoms have been held off
Anand, the co–director of the Ramayana TV series, suffers from Parkinson’s disease, a degenerative disorder of the nervous system which affects bodily control resulting in movement difficulties, muscular stiffness and constant tremors. A person suffering from Parkinson’s feels like a rope has been tightly wound over his/her body and it tightens with every passing day.
Eventually, a seemingly effortless task such as lifting up a glass of water feels like moving a mountain.
Most Parkinson’s patients are rendered speechless and motionless with the gradual progression of the disease. But not Anand. He parties, has a drink or two, snorkels and works every day.
He has been able to reverse the symptoms, not the disease, and outwardly, looks like a healthy person. His two weapons are — His tireless devotion to exercise and a rare surgery that installed a battery–operated pacemaker inside his brain that facilitates muscle co–ordination.
The Onset
The first symptoms of the disease hit him when he was playing cricket in Baroda in 1997 while shooting for the TV serial Krishna. He hit a good shot and sprang for a run. But fell down and when he got up, one of his feet was dragging. He consulted a doctor, who told him that he had Parkinson’s.
“I laughed it off. I thought the doctor had gone senile!” he laughs. So he took a second opinion from a younger doctor. “When he told me the same thing, I realised it was serious.” The disease progressed slowly, hindering his day–today functions. By 2004, Anand was in a wheelchair. “I could not hold a plate of food and had to be fed. My speech was impaired, and I had an expressionless face,” he says.
Anand stopped socialising because people pitied him or tried to be over sympathetic. “At any function, it was the same. Some smart person would come up and say ‘Arre inko yahan pe leta do’. It was insulting. I didn’t want to lie down. I was fine sitting upright. But no one understood.”
Additionally, there was the indignity of seeming a burden. “No one has the time to take care of an ill person,” he says. “The problems in our individual lives are not enough and top of it, a sick person to take care of? I started feeling that I would soon be sidelined by my own people.”
These were the darkest hours of his life. “I thought if I have to die, I won’t die in bed.” He remembered his old school principal, Father McFerrin of Don Bosco in Matunga. “He taught us what a man should be when he is caught in dire circumstances,” he says. Father McFerrin would send students in batches of two into the forest. They were supposed to survive on what was available, find a way back and then create a map of the route they had taken for others to follow. “This taught us to be on our own. I didn’t know then that it would have such a big influence on my life.”
The poem Invictus written by William Ernest Henley, which he had read in school, was another
influence. Incidentally,
it also inspired Nelson
Mandela when he
was in jail. “The last
two lines of the poem sum up my belief ‘I am the master of my fate/ I am the captain of my soul’.”
Battle–cry
He decided to go in for the surgery this March and is still recovering. The long period of rest has affected his stamina. He walks for three kilometres a day and his tar– Dr Anandh Balasubramaniam, the consultant neurosurgeon at Kokilaben Dhirubhai Ambani Hospital performed the eight–hour surgery on Anand in March. Two holes were made in the skull and an electrode measuring just a millimeter was inserted while Anand was conscious. This electrode stays in the subthalamic nucleus, an area inside the brain which is not larger than a fraction of a pea and is responsible for action selection. Because of loss of dopamine production by the substantia niagra, the part which controls voluntary movement and regulates mood, the subthalamic nucleus goes in an abnormal nerve firing pattern which results in impaired movement.
The electrode is connected to an wire which comes out of the skull, runs behind the ear and down to the chest where a battery powers it. The electrode emits a low voltage pulse that works as a balancing force between the subthalamic nucleus and the substantia niagra, reducing the abnormal nerve firing pattern and aiding bodily movement. The settings of the battery are controlled by the patient and it has to be charged once every week. It is expected to last 10 to 15 years. This reduces 60 per cent of Parkinson’s symptoms, including tremors, rigid body movement and stiffness. Also, it brings down the dose requirement for artificial dopamine. Before surgery, Anand needed 20 dopamine tablets a day; now he needs only four.
get is to hit six. Exercise plays large part in his well–being and recent research shows that it protects the remaining dopamineproducing nerve cells, helping them work better and survive for longer. There is a possibility that regular exercise could slow down the progression of Parkinson’s, improving the quality and lifespan of a patient. Anand has to do flexing exercises for each little muscle. It’s extremely difficult for him to get out of bed in the morning because his body is stiff as a stone. “The first thing I do is assess which part has been affected that day,” he says. Some days it is jammed fingers, on others it is shoulders or elbows. He starts by stimulating that part and does it till it feels better. To make his jammed fingers agile, he closes and opens his fists, 3000 times. “If I don’t do it, the fingers curl and remain folded,” he says.
- It’s the same for the toes. He has to curl them or they distort and make it impossible for him to stand up or walk. His solution is to use toe separators, used for a pedicure. These align the toes and help him stand.
- To un–freeze his facial muscles, Anand took to reciting novels, pronouncing each word aloud.
- Performing other tasks such as wearing a wrist watch and clasping the belt require greater co–ordination of the muscles. Anand has to concentrate hard to operate his phone. “People said that I would not be able to operate an iPhone,” he says gleefully. “I purposely bought it to prove all of them wrong.” Anand’s family abets his recovery. If he wants a bowl of dal which is placed across the table, no one will pass it to him. “I either have to stretch my arm or get up, go around the table and get it,” he says. Dr Anandh Balasubramaniam, the doctor who operated on Anand commends his dedication to exercise, “His wellbeing is activity dependent. If he stops walking, doing his daily flexing exercises, he will go back to the wheelchair.”
Parkinson’s hasn’t been all that bad. He discovered his hidden talent of photography while he was bedridden. His daughter, Gauri, graduated in photography from the Brooks Institute and gifted him a digital camera. With his condition, it was difficult to keep the camera steady, forget pressing the shutter. But he tried anyways. His first picture was that of his bedroom window. Being a director, he had a great eye for composition. The pictures he clicked later on seemed to tell a story of their own, some inspiring and others intriguing.
The camera is now a blessing. “When I am clicking pictures, I do not have Parkinson’s,” he smiles. Now he has graduated to using a professional camera and is contemplating holding an exhibition. Life is on fast–track now. He has already snorkelled in Maldives in April, and is now planning to go bungee jumping soon.
What is Parkinson’s?
Parkinson’s disease is caused when the brain stops producing the neurotransmitter dopamine which is responsible for communication between brain cells. When communication is hindered, they stop sending signals to the nerves which control functions such as motor skills, bodily movements and cognitive ability.
