My Nonprofit Reviews

My mom would have turned 60 this week. If she hadn't lost her battle with a monstrous disease. But in November2013, she did. She battled an extremely rare neurodegenerative disease called Progressive Supra Nuclear Palsy (PSP) for over 6 years, slowly losing ground.

Having to deal with an unexpected sudden death of a loved one is a terrible place to be in. On the contrary, awareness of an impending death is like having to look at an archer slowly sharpen his arrow, with the full knowledge that is being prepared for you and can strike you anytime. You are then at the mercy of a flick of his/His finger. We witnessed this process in all its glory for over 2000 days between 2008 and 2013.

“Hope Matters” is the tagline of Cure PSP, the most prominent PSP care group in the world. And until much later I did not realize the importance of ‘hope’. My mom was a fighter. She fought until the very end. But what matters and what makes her a hero is that she fought with hope until the very end. She knew it was an incurable disease. Yet, she never gave up. She went to every single one of her doctor’s appointments with a hope that there might be some good news waiting for her -- probably some new medicine might have been discovered, or a new surgical procedure might have been found to cure her disease! She never missed a single dose of her medications, hopeful that it will do whatever little good it can. Every time a medication was changed, a dose was altered, she would do her own little test --trying to walk without anyone's support, a task she knew fully well she could not. A test that had almost always ended unfruitfully. Despite some falls and bruises, and multiple rebukes, she would wait for an opportune time, when she could try this without catching anyone's attention. It was only a hope that some medication might have worked and made her condition better.

One of the later symptoms of PSP is a condition called 'dysphagia.' Here, swallowing becomes increasingly difficult as the disease progresses. Let alone giant pills, swallowing even mashed potatoes becomes an ordeal. In her last few months, despite immense pain and discomfort, she went through this pill-swallowing ordeal four times a day, every single day. Even when we missed giving her a dose, mostly to save her the pain and choking that would follow, she would adamantly ask for the pills and willingly go through the ordeal. For me, that's hope, right there, in its purest form. She was hopeful that someday, someone, somewhere, would find a cure to PSP. She fought until her last breath, quite literally here, as on her last breath she choked on a small sip of water. Until the very end, her mind did not give up. It was her body that betrayed, while her hope was present even in the most hopeless situations.

So ladies and gentlemen, here's some unsolicited advice. Never lose hope. When you think that you might miss a goal, a bus, a train, a meeting, or a deadline, walk a little faster, run a little longer, work a little smarter, and try a little harder. Like my mom would often say, 'you never know if you are going to make it until you make it.'

We have supported #CurePSP periodically through small donations. Wearing their 'Hope Matters' wristbands has led to unexpected conversations at unexpected places, giving me a chance to raise awareness. Please #givethanks to CurePSP whose mission it is to raise awareness of this cruel disease and host support group meetings for caregivers and their families. CurePSP also strives to advance research that can cure this Prime of Life debilitating disease.