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They stand firm, refuse to slow down

mumbai Updated: Apr 25, 2012 01:46 IST
Prachi Pinglay
Prachi Pinglay
Hindustan Times
Highlight Story

Jerry Benges, 50, loves his job. A night supervisor at a storeroom of a private hospital in Khar, Benges has suffered from Parkinson’s disease for the past 15 years. After being confined at home for three years, he says that this job is a big step forward.

Parkinson’s disease is a degenerative neurological disorder resulting in tremors, stiffness, unstable posture and speech problems. The disease, the cause of which is still unknown, largely affects elderly people and is said to affect one in 1,000 people. There is no cure and it worsens over time leaving the patient immobile – often with psychological disorders such as depression and hallucinations. Lifelong medication can control some of these symptoms.

However, in the past few years more and more people with Parkinson’s disease are opting for Deep Brain Stimulation surgeries (DBS, see box). Although the surgery does not cure the disease, it helps a patient control his movements better.

Benges underwent his first DBS surgery nearly 10 years ago. He had to return from Dubai, where he worked as a storekeeper, because of the disease. But within five years, he needed to undergo another surgery to replace parts of the pacemaker. The surgery costs about Rs1 lakh, but Benges could not collect funds for it. He suffered again for almost two years and finally did the surgery in in September 2011.

“Although the DBS surgery was an expensive and risky operation, I am glad I did it because now I can manage most things on my own,” said Benges, a Bandra resident, who drops his son to school in the morning and brings him back before going for his night shift.

“Earlier, people would not treat this disease and was considered it as part of the ageing process. But considerable improvement is possible in posture and movement with the help of DBS. We are trying to spread awareness that a patient need not put the brakes on his life,” said Dr Paresh Doshi, neurosurgeon at Jaslok Hospital.

In the past few years, the number of DBS surgeries has gone up from 30 to 40 surgeries a year to around 125 surgeries a year in India, Dr Doshi said. The surgery is recommended for patients who have been on medication for more than five years and are mentally prepared for it. Costing anywhere between Rs4 to Rs9 lakh, such a surgery is a big decision for most families such as Benges’. Benges borrowed some money and relied on monetary help from the church and charitable institutes for his surgery, which cost him Rs6 lakh.

His wife Perpetual, a cook, said that his mobility was most important. “I can pay off the loans but it is much harder when he cannot move by himself. Now, he is able to spend time with his children. He also manages everything by himself during the day when we are all out,” said the mother of two.

Dr Sangeeta Rawat, head of Neurology department at KEM Hospital, said, “After five years of medication, side effects such as hyperkinetic or involuntary movements start affecting the patient. Most patients get bed sores, postural fractures and develop complications at later stages. DBS may delay or prevent that.”

Benges could not hold back the tears as he spoke of his wife’s ordeal when he was almost bedridden. “This disease takes up all your money. But being able to manage life independently is the greatest gift of god for me and my family,” he said.