I gave birth to our second child in 2014. During my pregnancy in 2013 my dad fell ill with shingles and never got better. A nagging limp stayed even after he recovered from shingles. The nagging limp would make him trip and fall often. Initially, we thought it is probably low blood pressure or may be blood sugar or may be he just tripped because he was not careful. That year was full of hospital visits. He went to Sports Injury department, he went to orthopaedics, he went from one hospital to another and from one doctor to another. Then, his orthopaedics doctor suggested he sees a neurologist. From 2013 we were now in 2014 but the diagnosis had still not happened and we were clueless. He kept falling and tripping sometimes hurting himself very badly. We were at the end of 2014, I had already delivered our son by then. In September, when my parents took me to Fortis Gurgaon for my delivery, my father could not shift the hand break and had to call the driver to help him. His hands and grip had become weak by then. What started as a limp in middle of 2013 had now spread to his arms and we still did not have a diagnosis. It was only in November 2014 when my dad called me in the morning to tell me that he has been diagnosed with ALS by his neurologist. It took me a while to understand what he had just said. I still remember his voice on the phone and all that he told me. He said, “It is what Prof Stephen Hawkins is suffering from. That he needs to sign cheques for my mother to withdraw money because his hand writing will soon change. That his doctor wants to see his family.” His voice had chocked for a second. I still did not realise what were we dealing with till I started reading up about it. As soon as he disconnected the call, I started googling for ALS (Amyotrophic lateral sclerosis) or MND (Motor Neuron Disease). For those who don’t know what ALS or MND is, it is a very rare, progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. In ALS the motor neurons die and when that happens the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, people may lose the ability to speak, eat, move and breathe. The motor nerves that are affected when you have ALS are the motor neurons that provide voluntary movements and muscle control.
There is no cure for ALS and it is terminal in nature. Though there are a lot of research going on and the Ice bucket challenge was a huge part of the awareness campaign but we still have a long way to go.
Our first reaction to this devastating news was denial. We thought it could be something to do with shingles or diabetic neuropathy but with every test, with every 2nd and 3rd opinion the diagnosis did not change. It was indeed ALS.
It was time for us to accept it and time for us to plan our lives around it. My dad has always been the quirky types. He has a lot of quirks which my mom puts up with all the time. He once got an entire group of German hippies to live with us in Delhi. He booked and missed our first ever Bombay-Goa cruise. He would take me to Star Trek movies where I would sleep through the entire movie because I was only 8 years old. We would take me to film festivals and summer vacation trips to the hills. When he retired he had big plans to travel a lot with my mother. My mother retired in 2015 and it was then that my husband and I decided to take both of them for their first ever Europe holiday. We did not plan a France or Italy for them. The adventurer in them deserved something more splendid, hence we decided to take them to Iceland via Amsterdam. We realised that my father’s mobility will be gone soon and we cannot wait for our infant son to grow up because that would have meant my father not being able to travel at all. So we packed our suitcases, packed our kids and started our Icelandic adventure. Here are some pictures from our trip. On our way back, my parents lost their suitcase in transit. Their suitcases returned to Delhi after a trip to Paris. My mother jokingly says that she could not travel to Paris but her luggage did that too for free. At least the suitcases have the scent of Paris in them.
We travelled to Maldives and Singapore too after that. My dad is now wheelchair bound but his sense of humour and childlike excitement is still flying high so are his quirks which my mother still puts up with.