Living with Becker Muscular Dystrophy
I am Navin Gupta, 50, from Delhi. I was diagnosed with a rare disease, Becker Muscular Dystrophy(BMD) at the age of 20. Becker Muscular Dystrophy is an X-linked recessive inherited disorder characterized by slowly progressive muscle weakness of the legs and pelvis. There is no treatment/permanent cure currently available. My family wasn’t aware of my condition; we were all clueless.
“My illness went undiagnosed”
I studied in Delhi till class 8th and then joined Scindia, a boarding school in Gwalior. It wasn’t a smooth sailing! Sports and extracurricular were an integral part of the curriculum. The curriculum demanded a tough discipline as well as a rigorous daily routine. It was then that I realized, how much ever I work hard, I was still not able to run, climb stairs or play sports like my peers. My limbs would pain, I watched my friends running around normally. I didn’t know what was going on, I looked ‘healthy’.
“I was made mockery for not being able to participate in sports”
I couldn’t play football! But with my strong determination, I picked up other sports like table tennis and hockey. Academically, I was a below average student. I never gave up, by class 11th my academic performance improved tremendously.
“Early diagnosis as well as physiotherapy is crucial”
My family started getting concerned about it. After class 12th, I was admitted in All India Institute of Medical Sciences (AIIMS), and underwent a thorough check up. I was diagnosed with Becker Muscular Dystrophy pretty late in life. I was advised to take physiotherapy. With regular physiotherapy, I was somehow able to continue with my life. Later, I discontinued my physio, which I think was my biggest mistake.
“I didn’t give up, moving forward was the only way”
I did my college and eventually started my own business at the age of 22. We suffered great losses in business and eventually had to close it down. Later, I joined a marketing company and simultaneously did a diploma course in Multimedia. I was lucky to find a job as a teaching faculty in one of the institutes.Later, I went to Gwalior on behalf of NIIT with the aim to integrate IT in Scindia School, my Alma Mater. It was a golden opportunity to teach computers to my ‘gurus’, I was thrilled. But, my health was deteriorating slowly. Climbing long flight of stairs or walking a long distance was becoming challenging overtime. At the age of 30, I again resorted to physiotherapy.
“My family is my biggest inspiration”
Things started gearing up on the personal front as well.I got married at the age of 32. My wife is my biggest strength. We were blessed with a son. My son is my sole reason to live. He is in class 11th, my dream is to see him grow into a beautiful human being. He is my hero!
“Disease progression: sticking to a fulltime job was becoming challenging”
The disease progression started from 2008 and it went on. I started facing obstacles, such as using stairs, frequent falling, and climbing steep gradients without support. In 2013, my condition deteriorated, getting off the toilet seat became an ordeal. I consulted a neurologist and was advised to seek physiotherapy. Taking physiotherapy for three-four months helped me in regaining some strength. But the progression did not stop, and I had to leave my job.
“Managing my daily routine was becoming an uphill task”
I was doing fine, working as a freelancer, earning averagely. I was atleast able to fend for my family. In June’17 my health suddenly started deteriorating further. That was the darkest period of my life ever,being a patient of Muscular Dystrophy. I suffered multiple health problems simultaneously- I sprained my right hand, contracted throat and stomach infections, and suffered urology issues.
“I was unable to support my family”
I was fed up of my disease and lost all my strength to support my family on a regular basis. I lost all my clients and was left with no projects, due to my inability to deliver work on time. I was in a crisis with my health, finances, and relationship. Negativity and depression had started creeping in.
“It takes time, it takes work, things just don’t happen overnight. That’s something I have to keep telling myself”
Life doesn’t stop! After 8 months of support from my family, friends, supporting organizations, regular physiotherapy, medication, assistive furniture, meditation, and belief in God, my health has improved. Pain in the body has reduced. I am able to work for 7-8 hours; I am getting back to life. I even got some freelance projects. Meditation has helped me a great deal. Having spent so much time inside my own head, I know myself very well. I can see how I have become more determined, and more compassionate. I have good and bad days. In the end, mobility, medical care, belief in God, positivity and determination are the ‘Mantras’.