Name: Snehal Shinde
Age: 25
Where do you call home? Aurangabad City, Maharashtra, India.
Education/Career: I have a degree in Commerce and cannot pursue further education due to physical limitations. As the FA grew, I changed my career path. I am currently studying stock market business and this is my career endeavor, so that I can work from home.
Who do you live with? I live with my parents and brother.
What is a typical day for you? I stay home all day. I do my own work and clean myself. I try to depend on others at least, with some help coming from the family. Mom does all the housework and I help her with it. Then I exercise as much as possible. Then I have some time for study, TV, mobile and reading. Day is busy with this work.
How long have you known you are living with FA? I have known since 2012 (age 15) that I have been living with FA. When I was diagnosed by a neurologist in Mumbai through genetic testing and careful clinical examination.
Are there any others with FA in your family? No.
Describe an adaptation and/or transition you have had to take due to living with FA. I was walking without support until 2014. Then I started to fall down. As the balance dwindled, I began to use my friend’s hand as a support. Then I could not walk without support. Gradually the discomfort was increasing and I started using a walker but the problem kept getting worse. Then I began to fall down with the walker. And my full weight depended on the person who was supporting me; the hand of a friend in college and an out-of-college mother was the support I had. Until 2019, I was walking on a one-sided support. Every year, I walked shorter and shorter distances with increasing instability and loss of coordination. Currently, I can’t walk without both side support. I can sit and moving around the house and I will soon start using a wheelchair.
What do you like to do to stay active and what type of exercises work for you to stay strong? There is no alternative to exercise to stay active. Yet I like to be busy with my daily work. I spend most of the day doing housework, exercise. And the exercise in housework is unknowing. I exercise as much as I can but not as much as I should. Because I often get hurt while exercising. I always fall, then the wound takes time to heal; I get very tired. I had taken physical therapy for 4 and half years and now at home I do the exercises I learned there. I also doing morning pranayama.
Do you have any hobbies or special interests? The hobby is limited by physical limitations. Main hobbies include reading newspapers, reading books and blogs, Internet surfing. I also like watching TV, dance and social media, listening to music. I am interested in travel, politics, religious cultures.
What is a good trick to make daily life easier? To stay calm, accept life as it is and having a positive outlook on life are some of the best tips to make my daily life easier.
When FA gets you down, what do you think/do to feel better? When it takes me down, I take a moment to get depressed, cry and fall asleep. After including my own discussion in line with my feelings and thoughts, I remind myself of the good things that have happened in my life and the love that my family has for me, it gives me strength. Then I draw my own understanding. And the day begins again with new hope. FA creates so many problems in life that it is natural for this to happen.
What is one way living with FA has POSITIVELY affected your life? The FA has encouraged me to come up with competent ideas about what I deserve to do. FA made me a more mature, balanced, tolerant person and opened my eyes to new opportunities.
What piece of advice that someone with FA has given you that encourages and inspires you? No advice, but I have some FA friends on social media who share their workouts. It really inspires me and motivates me to move forward every day.
What is the best advice YOU could give a person who has been newly diagnosed with FA? Be as active as possible. Take physical therapy. Keep exercising. Accept life as it is and love yourself. Be happy.
What is the first thing you want to do when a cure/treatment to FA is found? I will take treatment first. Will be very happy. Give many thanks to God and scientists/doctors. It will do everything it can’t do now: trekking, dancing and more.
“I have FA but FA doesn’t have me.” What does this statement mean to you? How do you live your life in the face of adversity? I think that means the FA has caused physical pain but it doesn’t consume me. The FA is an aspect of my identity, but it certainly doesn’t define me. Living with FA is not an easy task but living with disease control is possible.
Interview by
Xhesika Peza