MY ATAXIA FIGHT……

ATAXIA….. A completely unknown word to any person until someone close is diagnosed with it. And after that “ATAXIA” related stuffs are maximum in google search history of that person.

Hey Hi, This is Swara and I have had very long association with word ATAXIA.

Though I was diagnosed with SCA3 (Spinal Cerebellar Ataxia 3) in 2015, my fight with ataxia started from year 2000 , when my dad started showing symptoms of ataxia.

My dad is an Indian classical musician. Until 1998-1999 I remember my dad being physically very active. But around that time we realized that he used to tilt on his left side while walking. This progressed to him losing his balance while walking, and walking like a drunkard.

We did not know what was happening but knew that something was wrong with dads health. We consulted local doctors initially and after undergoing multiple tests, they came up with a conclusion that “ Mr. Mahajan, Kya aap bohot tension lete ho? Aap Sochna kam karo, you will be fine.” Also they prescribed some sleeping pills for my dad so that he sleeps more and thinks less.

Dads health continued to deteriorate and then we started to consult few neurologists in Mumbai. After his CT Scans, MRI and multiple tests we knew that it was a rare genetic disorder known as Ataxia.

In any family when someone is diagnosed with some rare disease, family goes through some emotional phases. First of all is when everyone denies the diagnosis and firmly believe that something is wrong with the report. Then comes the phase of “Why me” . In this phase family feels that why did this happen only to me. Third is the phase of Acceptance wherein we accept the fact and then in last phase we start to look for solution and say “ OK. Now what further”. Its very important for any family to get to last phase at earliest.

Biggest mistake we did for dad was that we were stuck in first phase for long. We took time to accept that dad had neurological disorder.So until we reached in the last phase of finding solutions, dads health had deteriorated to greater extent.

Then after accepting that dad has ataxia , came the phase where our desperation for cure for dad was at next level. Anyone came up with any remedy, we would try it. Anyone suggests any doctor, we would consult him. I remember every doctor used to say within 6 months dad will be fine. Then treatment would go on for years with no results. That really used to be depressing.

There was only one doctor , who told us that ataxia cannot be cured and we should start saving for our future. Honestly speaking we did not trust him and somewhere felt he wasn’t a good doctor.

15 Years later story repeated itself.

I started to lose balance while walking. My health was showing similar symptoms which dad showed in year 2000. But this time our approach as family was completely different. Acceptance for my ataxia was very fast.

We consulted the same neurologist who had told dad that there was no treatment for ataxia. He told me the same but this time we did not feel that bad.

I knew that as there is no treatment for my disorder I just had to figure out how to survive with it. I consulted a dietician and reduced my weight from 68kgs to 52 kgs in span of an year with dieting and walking as I knew that would have been difficult for Ram ( My husband) to take care of me if I am over weight.

I remember telling Ram that “Don’t make me a guinea pig for therapists” as I knew that desperation for cure for ataxians and their family makes them to take unrealistic treatments.

That time I was working in a Bank and due to my health issues I had to quit my job. It was very difficult phase for me emotionally as I had spent all my life chasing career and here I was …. That time I realized I was indeed blessed with amazing husband who motivated me to persue LLB . I did take admission in Law college and then was occupied with my Law studies. Sometimes we need some external factor to feel “Worth Living” and Law studies proved to be that factor.

My disease progressed pretty fast….. faster than my dad. Hence imbalance progressed to inability to walk alone. My all movements started to restrict. Small activity started to lead to tremendous muscle ache. My writing ability was affected negatively. I just used to pray god to help me complete my LLB and touchwood god did help and I could complete LLB.

Though I have got diagnosed with Ataxia 6 years back , Ataxia has been part of my life for much longer period of time. Hence one should know that -

Ataxia is a disease which not only affects an individual but it affects full family.

Ataxia not only affects ones physical health but also affects Emotional, Social, Financial health.

A person with ataxia has to face many physical issues which cannot be seen, like tremors in the body. Externally everything seems perfect but internally there are issues like tremors, stiffness etc. Its very frustrating when a person has to lift hand or leg but is unable to as hand or leg doesn’t understand that it needs to get lifted. Its very easy for anyone to say “RELAX” but how to relax when fill body seems to shake or shiver due to tremors. So I feel that ataxians have hell lot of physical issues to face and its very important for family to understand that the physical issues they see is tip of iceberg and there is a bigger portion beneath.

Emotional aspect is also very important. For example, I was Senior manager in a bank and I struggled a lot to get this position. One fine day I had to quit due to my health. Its so depressing. Sometimes I felt that if ultimately I am destined to be a housewife why did I study so much. Ram and my parents did understand my frustration and they gave me option to study Law and keep myself occupied with something constructive.

Socially ataxians do withdraw themselves from society. This happens because either people are insensitive to you are extra sympathetic towards you. In both cases its difficult to handle.For my dad though he was a teetotaler, due to his walking style people presumed that he was drunk. In my case someone who never bothered for me, starts to cry and become extremely sympathetic towards my health. In addition to this people come up with different remedies which I know would not help but their conviction regarding these remedies is so strong that you need to accept them. So I came to conclusion that its better not to face people socially.

Financial planning is very important for a family of ataxian. People need to first accept that there is no cure for ataxia. For my dad we spent so much that we had to take loan for his treatment. There are numerous thearapies in this world which claim to cure ataxia and ataxian and his family is so desparate for cure that any can spend any amount for that cure. I remember, we were told that in some jungle is some guy who gives some herbal water which will help cure dad. We went to that jungle to meet that guy and after a year when there was not improvement we realized that we had spent thousand of rupees for that water.

Its very important to save money for future as ataxians ability to earn would reduce as disease progresses. Fortunately ataxia gives you enough time to plan your finances . And as per my personal experience , nothing helps but your savings only help in case of this disease.

Finally I would like to conclude by saying that there is no point fighting ataxia beyond a point, its important to figure out how to live with it. Also every ataxians journey is different from one another, every one has to fight their own battle, but more lightly you take life ,lighter it will be.

Remember to enjoy everyday to its fullest. Do the things which you love to do and love the things which you can do. Our life is different from others , its not normal , but its beautiful. So always be happy and continue your journey…………….

----Swarashree Mahajan.