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Submitted by Dr S. Patel on 25 February 2020

Kavita Pawaskar, 38 had her first symptoms of Multiple Sclerosis when she was 10. She shares the effects of this condition and the impact the increasing disability has on activities of daily living. 

#DayInTheLifeSeries

In 1992, when I was 10 years old, I was going to school one morning for my exam. While I was writing my exam paper, suddenly my arms stopped working and I just could not continue. The next day, I had my second paper. I sat down in the classroom and the next moment, everything went dark. I had no vision at all. My parents were called to school and asked to take me to a doctor right away. At the hospital, various tests were done to examine my eyes including CT and MRI scan. However, no conclusive diagnosis was made. I was given prednisolone injections and sent home. My vision had permanently gone in both my eyes, nothing could bring it back. I was enrolled in and started going to a Blind school then.I started getting used to this new life and learning Braille. About 8 months later, suddenly I had weakness and numbness in my leg. The doctor checked me and given my vision history, concluded and told my parents that I had Multiple sclerosis.

I was given methylprednisolone injections for 5 days and that helped relieve the leg problems. Through the years, I have periodically had such episodes or attacks as they are called. An attack would mean complete non-functioning of my legs involving weakness, loss of balance, numbness and inability to walk. Initially I would get them every 6 weeks or so. I would be prescribed the methylprednisolone injections after which I would feel much better. However, each injection used to cost Rs 500 and that was not something my parents could afford. My doctor told us to contact an NGO called MSSI for aid. MSSI then would give us money for the injections. They also started sending me a Physiotherapist (free of charge) to my house. To this date, I still have a Physiotherapist who comes three times a week from MSSI.

While we got adjusted to my condition, the attacks did slow down too. However in 1995, I had an attack which for the first time involved my hand. It affected my right leg and right arm. This left my right arm, hand and fingers with movement problems that I still face. I am unable to grasp or do fine motor activities with it. For instance, I am unable to comb my hair, write or hold anything for long. I use my left hand for such things if need be. This affected my ability to also read braille because you need both hands to read. I did continue going to school and even passed my SSC 10th grade board exams. They would give me a audio cassette with the questions and I would dictate the answers. For 11th grade, I was very interested in cooking, so I went to a Junior college where I could do such a course. It taught me to make Indian sweets and help my mom with her daily cooking.

My next major attack was in 2000, after which my legs completely stopped working. I was in 12th grade at the time. I got paralyzed from my waist down and have been bedridden since then. I live with my mother, brother and his wife. I have to rely on my mother for most daily rituals as I am unable to even get up and sit on my own. It’s hard because my father passed away some years ago and my mother is now 72 years old with a heart condition. For some time, we had a female maid (ayah) sponsored by MSSI who would come in daily for a few hours and help me, giving my mother a break. About 10-15 years ago, there was an incident which left me scarred. I had tummy pain, so my mother put a hot water bag on my belly. She went to do her daily chores and forgot about the bag. When she remembered, she removed the bag with my skin attached to it. My belly had burned and I did not feel a thing. On that day we realized that I had lost all feelings of sensation.

A typical day for me involves waking up, brushing teeth and getting a sponge bath on my bed itself by my mother. I can change my own clothes and also eat on my own. So I have my breakfast and am then laid back down. Sometimes, I help my mother clean and peel vegetables. Or else the TV is on and I listen to it. I have even entered and won quizzes on the radio about TV shows. I am made to sit up during meal times. Since I have a catheter and bed pan, I do not need to be lifted to the bathroom. Every afternoon, my mother or my Physiotherapist makes me do my daily exercises not just for my legs but also my neck, arms and shoulders. I have learned the numbers on my landline and can use it if need be. MSSI also gifted me a mobile handset so people can call me on that and it also tells me time loudly. I cannot use the mobile to make phone calls though as my fingers won’t allow it.

A few days ago, I had another attack which made my whole body rigid and stiff. I am currently in the hospital but I like it here and my mother too gets a break from looking after me. 

I keep worrying about what will happen next. I cannot do much on my own. I wish that atleast my legs would work, then I would not have so much dependency. 

 

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