Amit Agarwala joins us from India. He has Restless Legs Syndrome and SCA12.
I had a regular uneventful childhood.
RLS (Restless Legs Syndrome) was the only event that rocked me. I needed a pillow between my legs to sleep; no doctor could understand the reason behind it. One time when I was in the USA visiting my family, a primary doctor understood my problems and diagnosed me to have RLS. Our biology major daughter was studying at India’s premier institute for biology majors. Not knowing the terms, my wife and I accepted her conclusion that I was suffering from Huntington’s disease. So, I carted myself to a premier path lab at Fortis Hospital and had blood drawn to test for that disease. Results were back 3 weeks later, and I was certified to be Spinocerebellar Ataxia type 12 positive. I was 47 at the time. I was not devastated with minor tremors in my hands as the only symptom. My 2 elder brothers were much more ill than I. That has continued since. Though my brothers are 5 &14 years older, I have always been less affected by SCA12 Ataxia than them.
I met a well-known Neurologist in Fortis Hospital with poor bedside manners. He wanted to convince me of my poor chances of being disease-free for long. It has been six years since (I am 53 now), and I have generally been well.
I am a Telecom software engineer with an undergraduate B.E. degree in Electronics and Communications. I finished this degree in 1989. After working for a couple of years, I went to the USA and obtained an MS in Computer Science from Penn State University (State College, PA). After working at Microsoft for a bit, after the birth of our children (they are [Amisha, girl, today 23], and [Aryan, boy, today 19]) we raised them delightfully, we had fun together.
I enjoy listening to Western & Indian Classical music more than any other. I also learned how to play many musical instruments – in sequence they were: Harmonium (wind instrument), Banjo (string …), Tabla (percussion …), violin (string …), Flute (wind …), and Harmonica (wind …)
I immensely enjoyed my time playing and listening to music. But life must move on, I suppose.
I have enjoyed reading books both fiction and non-fiction. It is difficult to buy them all (rather expensive), and so I became a frequenter of public and private libraries.
My friends and I also enjoyed playing Soccer and Cricket and I enjoyed Philately (stamp collection) as well. Finally, I painted canvases with oil colours.
Now that I have become accustomed to having Ataxia, it has taught me to change my lifestyle. I quit my job I was working in because I could not travel back and forth 30 miles every day.
I am unable to cut my nails anymore. When charged with such a task, I try to use a sharp nail cutter. But I cut my nails wrongly – too close, too far, or mixed. But I do my best all the same. My issue with shaving is next. When I was just around 50, I continued shaving as usual. But I began to nick myself almost every time. One time, I cut around my upper lip, which bled and bled. That was the last time I shaved. Now I visit a barber, which is much more comfortable.
I am also unable to run. As time has passed on, my legs have become weaker, and with RLS troubles, I am unable to.
Next are my troubles with writing. With tremors built-in, I am unable to write coherently either. This makes it difficult to sign or execute documents.
Now, my ability to play any musical instrument is lost too. My tremors have grown to a point where I can think about it, but not do it.
The word “Ataxia” was unknown to me or anyone in my family. It’s only when I joined the FB groups. We only knew the word “tremors”. it is quite invigorating to understand “rare diseases”, and how they affect me too.
I do not understand my wife’s interest in keeping me safe and sound and modifying her interests in line with my disease. Why would she? For instance, in Jan 2020 my Neurologist wanted me to get a Brain and Spine MRI scan, but I just wasn’t able to lie down in the claustrophobic MRI machine. She ran around and got my Neurologist to recommend one under sedation. I did that. She works in a full-time job, earning for our family. She was clear in helping me stay safe during the 4 long months of lockdown during the COVID-19 pandemic.
I am unable to play any one of the myriads of musical instruments before. My hands refuse to listen to the rest of my body.
Thanks for sharing your story, Amit Agarwala!
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