“Are you sure?”, “What, are you serious?”, are some of the reactions Mohan Kumar got from his parents when he told them the news. He is a software engineer and generally quite an active person. Always healthy, he never took medicines, and staunchly believed in self-healing. Naturally, it came as quite a shock to everyone who knows him when he got his diagnosis of Motor Neuron Disease.
It was during a trek in 2018 that he first noticed issues with his co-ordination and a little weakness in his right hand. They were small things in the beginning- such as squeezing lemons and getting less juice than before, holding mugs and carrying small weights becoming more difficult, the right hand stiffening and then opening at certain instances etc. He felt different physically as time went on. His wife noticed too and told him that he wasn’t like he was earlier.
Getting a diagnosis was difficult. The initial diagnosis was that of a motor problem with the right hand. He got muscle biopsies done and initially experts concluded that the weakness was possibly due to hypothyroidism and nutrition deficiency. In 2019, MND was diagnosed as the only possible cause.
Along with that, it was also disheartening to see the attitude of the medical professionals. Many were quite insensitive in their approach, especially when they didn’t know how to deal with the situation, saying things like, “You got MND? You’ll have 1 year, 6 months, five years, ten years or twenty years to survive”. Mohan only remembers one doctor who was empathetic to him since the diagnosis.
It was the lack of awareness that made explaining the diagnosis difficult. His parents still don’t completely understand the diagnosis and think the problem might be due to something else. Despite this, they have comforted, supported and reassured him. “My parents and I sat down to discuss the problem and they assured me that there is no possibility of my mistake or because of something I did. They mentioned now that there is a problem, we have to live with it. So we moved on”, he remembers. His wife also had a difficult time in the beginning, falling into depression for six months. She too pulled through and is one of his strongest motivators. Together, they have kept up each other’s morale and positivity.
He is also thankful to people like MND Trust Managing Trustee Mr.Vasanth Rao for supporting and encouraging him. “Somehow I got to know Vasanth Rao. He also motivated me like anything. Every time whenever he talks to me he tells me not to worry and that I will come out of it. Those inspirational words always help.”
He also appreciates the work done by the Trust, mentioning how he hopes hospitals follow suit as well.
“Hospitals could keep us informed of some of the improvements, some advanced medicine which are coming or give any suggestion- like your Trust is doing, keeping us informed of the latest advancement in MND research. Such information will be beneficial to all affected patients”, he says.
Since the diagnosis he has tried acupuncture, stem cell injections, ayurveda and physiotherapy. Despite getting temporary relief from acupuncture, the weakness continued. “I started to drag my feet and could not lift my leg and cross the doorway, I used to get fed up. My friend noticed me dragging my feet instead of lifting my feet to walk. I developed foot drop.” Depending on his family for physical help has also been a source of disturbance for him, often ending up in him worrying about bothering his people.
However, despite all this, in the face of all obstacles it is his unbeatable spirit that perseveres. “People must realise that they get this disease not because of any mistake one has made. Those who get it have to fight, stay positive and keep happy and move on. I think this is the only way to fight the problem. Stay happy and stay positive- the mind is a big healer”, advises Mohan. “Only thing is-try to keep yourself happy. You know there is no cure, you keep yourself motivated- that’s it. We don’t know about tomorrow and cannot predict the day after tomorrow. One or the other thing will be waiting for us definitely and help will come in strange ways. “