When he was told he had muscular dystrophy, Aditya’s initial reaction was denial. But soon, his fighting spirit came to the fore. Read about his journey from weakness, to strength.
I was an obese child, perpetually lethargic, and disinterested in physical activities and sports. Everyone thought I had a couch potato attitude, like many kids do these days. But when I was diagnosed with FSHD Muscular dystrophy, I realized this was the underlying cause of my obesity and laziness.
Noticed symptoms when I decided to shape up
Before I went abroad in 2008 to pursue graduate studies, I lost 50 kg through dieting. From 125 kg, my weight dropped to 75 kg. In 2011, I completed my higher education and got a job in the UK.
At that time, I decided to build some muscles and get fitter. During my workouts, I began noticing some strange symptoms: an inability to raise my arms completely, the lack of muscles on chest, arms, back and a slightly curved spine.
I was in a denial when they told me about the disease
Upon my return to India, I had a physical checkup. When the doctor told me I had a serious disease called FSHD, I was struck by disbelief. In fact, I didn’t bother to pay attention to what he was telling me.
Deep down, I was disturbed by the diagnosis, but on the surface, I refused to acknowledge the seriousness of my problem with everyone, including myself. In short, I was living in a denial.
I tried to lose myself in partying, and began smoking and drinking to an alarming extent. But, I felt guilty knowing that my attitude and behavior was doing me no good. My conscience reminded me that I was here for a reason. So, I decided to accept my reality and declared war with FSHD, a disease with no cure.
Muscular Dystrophy slowly degenerates muscles
There are all kinds of Muscular dystrophy, and I have what is called Facioscapulohumeral muscular dystrophy (FSHD). This is a genetic disorder which starts manifesting signs and signals after the age of 20.
FSHD slowly weakens and degenerates the muscles of face, shoulders, scapula, back, and also arms and legs in many cases. It progresses so rapidly, that many people after the age of 30 end up in a wheelchair.
Mental and emotional challenges to tackle
For me, doing daily chores like brushing my teeth, bathing, walking and raising my arms was problematic. Expressing myself is also extremely challenging, as my facial muscles are weak and I find it hard to smile and speak. It’s the most scary and suffocating place to be in.
Apart from my physical difficulties, muscular dystrophy has also challenged me mentally and emotionally. My social skills have declined, as I find it hard to connect with people in a normal way. I am quieter, and less communicative too.
Leaving no stone unturned
But, I’m determined to slow down and even stop the degeneration of my muscles. I train like a professional athlete. I try to eat like our ancestors did, and focus on natural and pure foods.
My meals are well balanced, and I take special supplements that include the purest forms of vitamins, minerals, enzymes, omega 3/6/9- all extracted from organic food. Everything I ingest is free from chemicals, heavy metals, pesticides and preservatives.
Also, I am on stem cell therapy. Though it isn’t a sure cure, there are some stories of success with this therapy, so I’m willing to give it a chance. Slowly, by hit and trial, me and my therapist have figured out the right amount of stem cell doses for my body.
Each day of my life is a battle
Today, I run a large-scale industry alongside with the battle against my disease. Fortunately, I have always been a persevering, stubborn person. The goal of my life is to win this war against muscular dystrophy.
Deep down, I believe I will create history by defeating FSHD. Though my earlier intention was to slow down my muscle decline, now I am determined to overcome the disease.
At times, I can’t avoid facing the deterioration of my health despite my efforts. But, I don’t stop. Instead, I bounce back even stronger and more determined. I have started to slowly reverse the effects of muscular dystrophy.
It has not been easy for me to manage work responsibilities alongside my workout and stem cell therapy.
You never know what you are capable of
This experience has made me realize that none of us can take life for granted. People who struggle like I do, have the power to motivate others.
Problems throw up the opportunity to discover our own strengths, and enable us to draw on our reserves of energy to fight them. Like me, I feel everyone facing extreme difficulty is capable of pushing beyond their limits and achieving the impossible. We are all more capable than we imagine!
Some prominent FSHD societies include FSH Society, Friends of FSH Research and FSHD- Global Research Foundation.