National Ataxia Summit - 2022 -- October 08,2022 


Ataxia is a condition where some people suffer and struggle to cope up with this rare syndrome. Since not much research has been done, so many people in our society and even in medical fraternity are not aware of this condition. To me it seemed like a “black hole”. However, after joining the “All India Ataxia Group” it seems that we have some hope, even talking about it in the group and finding there are people coping up in this condition, gives some strength to me.

I am Yamini 36 years old, I’m staying with my parents at Noida. I have Cerebral Spino Ataxia. Today, I will share my story of struggle and patience, of hope and despair, of rejection and acceptance, and innumerable uncertainties associated with “ATAXIA”.

I was diagnosed as Ataxia patient in October 2010 at Max Hospital Saket, Delhi by Dr. Reddy, neuro physician, I went through elaborate tests, MRI, CT scan, Mobility/coordination tests, IQ/EQ tests, etc. Besides this, I visited CMC Vellore AIIMS Delhi, Leelawati Bombay, SGPGI Lucknow, PMCH Patna, etc. in search of a cure, in hope of right medical guidance/ diagnosis. I continued with some medication for 8–9 years. But, doctors suggested to stop talking medicine as this condition seems to be incurable and medicines were not helping me.

Let me share my experience of student life from class 5 to graduation. Initially I tried to focus on my studies and followed the instructions of my teacher and mother (as she used to help me). Gradually, I started to lose my interest and concentration. It effected my performance. I was unable to give answer to simple questions asked by my teacher in class. My class-mates used to laugh and mock at me, it brought tears in my eyes. I remember seeing her watery eyes and despair on her face, after each of my PTMs. Both of us felt helpless and I couldn’t understand why this was happening to me but I decided to work harder.

My mother contributed more time to my studies trying to teach me concepts in simple methods. Though I spent more time and hard work for every concept, still I failed to understand, retain and memorise it well. I couldn’t understand why. My mother also felt disappoint, as her efforts were also going in vain. With each passing year (2010-2014) my mental and physical deterioration was increasing. I couldn’t get admission in a proper college due to my low marks in Tenth standard, therefore we decided to complete the class 11th and 12th through NOS (National Open University). By this time, my balance and coordination of limbs had degraded and I use to fall down or drop things form my hands very frequently. My stammering had also progressed. We went to see another neuro-physician, who after some tests confirmed the condition to be “Ataxia”. In 2016, I fell down once which proved to be very serious, a rod was inserted in my right foot to give me support and since then I became wheelchair bound. The symptoms of Ataxia started becoming more pronounced, I needed some support for standing, for moving from one place to another, I started facing difficulties in swallowing food, etc.

In this journey so far, my mother has been a pillar of strength, she has been assisting me with my daily routines like washroom, bathing, changing dress, feeding me, taking me for a walk, involving me in some activities, etc. I derive strength from her positivity and hope. My condition keeps pulling me into a world of isolation and loneliness. I have become quite an introvert person, my interest in interacting with people has diminished over the past few years. I quickly lose interest in any kind of activity as well. But it is my mother who tries to infuse a new lease of life, who find ways of involving me in new activities every month. I want to share that, we all need to derive happiness and hope from something or someone or from the inner conscience, in order to move on. Yes, it’s very difficult, yes its heart breaking , and many a times I want to end it all …. But then I think God has given me a chance to live and experience life. I’m still able to breathe in fresh air and see the morning sun. I do have a few people in my family who love me. I can still smell the fresh air and sleep with a roof over my head within safe confines of my home. These are few blessings I have, and I cherish these a lot. For each one of us this “kindly of joy/hope” may be different, but as long as we find it and muster the strength to move on and smile, we are defeating Ataxia that day.

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