Parna Mukherjee tells her story of living in a family with SCA2 and how she copes with the disease through movement.
I was born in a family with SCA2 back in India. My father had the symptoms of ataxia as well as all his five siblings. At that time, it was not genetically tested, but all his siblings were symptomatic. All of them were wheelchair-bound at the end. However, my father died of congestive heart failure, and he walked with assistance till the very last day; he was 74. However, the neurologist correctly diagnosed OPCA (Olivo Ponto Cerebellar Atrophy) from the symptoms only and told us that there’s no cure.
I knew this from birth almost and learnt from school how an autosomal dominant inheritance puts me at a 50% risk of inheriting this SCA.
One thing was clear about the progression of symptoms by watching my father and his siblings: the more active you are the less the symptoms progress. Fortunately, my father was the most active one among his siblings.
My childhood was rather good. My father was super active in his work and showed minimum symptoms. I am a B.C.E. (Bachelor in Civil Engineering) in1992 and M.C.E. (Master of Civil Engineering with specialization in environmental engineering) in 1994 from Jadavpur University, India. I am an Alma Mater of my father.
In 1998 I came to Lehigh University, USA to pursue my doctoral degree in environmental engineering. In 2003, I graduated with a PhD in Environmental engineering and then after a short post doc, was employed by California State University, San Luis Obispo as a faculty in their Civil and environmental engineering department.
The following year I got married to my fellow PhD mate from Lehigh and had a son. About 8/9 months after the birth of my son, I quit my job at California State University and decided to stay at home in Raleigh, North Carolina. The following year I gave birth to my daughter.
When my daughter was three/four years old and I was about 40, I started to have symptoms of ataxia, mainly unsteady gait. I diagnosed myself as inheriting the ataxia that runs in my family. I was not shocked or saddened as mostly all my aunts and uncles got to live a full adult life before the disease takes over.
Even though I was very academic and not at all sporty, I kept active all through by enrolling myself in gyms, yoga in India and walking in USA. Again, some five/six years back, my gait deteriorated and I enrolled in Muay Thai (Thai martial arts) and that drastically improved my symptoms. Due to COVID the Muay Thai classes got cancelled and the gym closed. Currently, I do two virtual sessions per week with one of Muay Thai instructors, who is also a physical trainer. Also from last year, Mark Desa introduced me to Tim Anderson’s Original Strength System which I am practising by pressing resets. Also, from last year I have decided to work out roughly 1 hr per day which is not hurting at least. I am 51 now.
Last year, 2020, I got in touch with Dr. Kuo, a movement disorder specialist in Columbia Presbytarian hospital who promptly included in a drug trial of troriluzole of Biohaven Pharma of 200 mg for ⅔ years. It was in 2020, when I was 50, I got genetic testing due to the drug trial: it was at that point I knew that our familial disease was SCA 2 categorically. So I really got formally diagnosed at 50.
I firmly believe in science and therefore got into this drug trial. I am super excited about this and all the drug trials coming up as this shows a greater awareness for a little-known movement disorder called ataxia and when the previous generation was just told that there is no cure. I am also grateful to my spouse, children, mother, trainer, friends without whom I’m nothing.
All said, I feel that exercise or movement can definitely alleviate symptoms. Most importantly, if you cannot do something today, not to let it go; keep trying and do it. Let’s win this battle over!
Thanks for sharing your story Parna!
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