ALL SMILES Caregivers of MS patients come together to laugh, dance and forget their worries

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Ketan Tanna meets a support group that attempts to bring a little sunshine into the lives of multiple sclerosis patients and their families

It’s a sunny Saturday morning. An unwell Kavita Pavaskar finds herself unable to make it to the special meeting organised by the Multiple Sclerosis Society of India (MSSI) at a school in Sion. However, she makes sure that her 61-year-old mother, Sharda, and her five-year-old nephew attend. Kavita, who’s been a multiple sclerosis (MS) patient for ten years, knows how important it is for her mother to take a break from looking after her.
Caregivers of MS patients come together on this bright afternoon to relearn an art they’ve long forgotten: of laughing their belly out, of feeling free and letting go of their worries. A laughter therapy session has been organised by the MSSI, helmed by Dr Madan Kataria, who makes it a point to reiterate that the body cannot distinguish between induced, fake laughter and one that comes naturally from within the body. Sharda and her grandson dance like there’s no tomorrow when the laughter orgy takes off.
As the meeting progresses, some 25 people, just like Sharda, let go of their defences. Each one of them is either a patient or a caregiver: some laugh their guts out, some begin weeping, while some just look stunned that they still retain the ability to laugh and smile. Many of them, for years and decades, have been tending to dear ones suffering from MS and helplessly watching their progressive deterioration.
MSSI, which was established in 1985 and has over 200 members in its Mumbai chapter, organises free medical camps, counselling projects and physiotherapy sessions for its members. The Saturday laughter session for care givers is one of the ways in which it seeks to spread cheer among patients and their care givers.
According to one estimate, there are 40,000 to 50,000 MS cases in India. Most of them are not registered, as diagnosis can take a long time. MS, to date, essentially remains untreatable. In a majority of cases, the nervous system is repeatedly attacked, resulting in devastating disabilities in young people who are generally in the prime of their lives. The patient lives a normal life span but slowly becomes increasingly disabled and often bedridden. The symptoms of MS range from minor visual problems, slurred speech, and a tingling in the arms and legs to total paralysis. Daily tasks like bathing or going to the toilet have to be carried out with the help of a caregiver, and this takes a toll on both the patient and the family. The overall impact leaves the family debilitated financially, physically and emotionally.
For years, Sheela Chitnis, who is now the national honorary secretary of MSSI, was unable to understand why her husband was so clumsy. He would often drop cutlery and household stuff, and “once he dropped even our three-year-old baby’’, says 66-year-old Sheela, recollecting the 1960s when she was a new bride trying to come to terms with her husband’s illness. Even though her husband, Mukund, was educated in UK, it took many years before the family realised that he was actually an MS patient. He eventually passed away in 1995, totally bedridden at the time of his death.
“This is the biggest problem MS patients suffer from. Rarely is MS diagnosed quickly. The patient usually keeps doing the rounds of various doctors and getting tested for a variety of ailments. Eventually, some doctor realises that it is a nervous system-related problem, and then with the help of an MRI, a correct diagnosis is made,’’ says 58-year-old D Krishnan, who has come to the Saturday meeting with his son.
Krishnan, a retired deputy general manager (R&D) of Mahindra and Mahindra went through the gamut of misdiagnosis himself, discovering that his ailment was MS only in 2000 after an MRI taken at Hinduja Hospital showed lesions in his brain. He would often forget things, and suffered from dizziness, headaches and numbing pain in his joints that debilitated his functioning. “My self-confidence was shattered. There were times when I couldn’t finish a presentation. Many times I could not answer questions from juniors. It all affected my decision-making process,’’ recollects Krishnan who eventually took VRS after suffering from depression as well. Fortunately, his wife Janaki, an officer with Union Bank, also received a VRS offer and gladly took it because she says it would not have been possible for her to look after her husband and carry on with her job as well. TNN