Swaroop

5 Years Living with ALS: A Personal Journey

It’s been 5 years dealing with this beastly disease, ALS. I’m almost immobile with random twitching happening all over my body. I can move my neck to a certain extent and my eyes and eyelids. My speech sounds as a bunch of grunts and is extremely difficult to understand even to my wife except forContinue reading “5 Years Living with ALS: A Personal Journey”

Eat , Pain , Love

Eating is a chore for people with ALS / MND and it’s no different for me. I always loved good food and still love it although I eat in small quantities now. Swallowing with a chin tuck minimizes the risk of food and liquids entering the trachea preventing choking. As I enter 6th year withContinue reading “Eat , Pain , Love”

Four Years on …

It’s already 4 years since I was diagnosed with ALS/MND. I’ve lost a lot of bodily functions – walk , stand, sit long hours, speech, Lifting my limbs, etc except the will to live and be there for my loved ones. This apart, I believe, regular physiotherapy by my good physiotherapist and supplemental nutrition haveContinue reading “Four Years on …”

Speaking with my eyes

My physical body is beginning to rapidly fail. I am barely mobile, and my speech has become slurred to a point where my interactions with people I have never met before are hardly intelligible. My mind continues to be as sharp as ever with all my senses intact. My hands tremble often and fingers twitchContinue reading “Speaking with my eyes”

One year…

Phew! It’s one year post MND diagnosis already! What a year it has been. A year that has seen me age even faster. I had taken a few things in life for granted like – Walking on the road Driving a scooter Playing badminton with my daughter Being able to have a good conversation withContinue reading “One year…”

Living will

I lost balance and fell on my face at home about four weeks back and broke my four front teeth. Pieces were lodged in my upper lip. The doctors had to remove them and stitched my upper lip which was torn inside out. The good dentist put caps on my fractured tooth and it looksContinue reading “Living will”

Finding a cure for MND – Letter to honourable Dr. Kiran Mazumdar Shaw

Dear Honourable Dr. Kiran Mazumdar Shaw I appeal to you as an Indian affected by a dreaded disease, namely Motor Neurone Disease (MND). As you know, Motor neurone disease (MND) is the name given to a group of diseases in which the nerve cells – neurones – controlling the muscles that enable us to move,Continue reading “Finding a cure for MND – Letter to honourable Dr. Kiran Mazumdar Shaw”

My Bucket List

Travel the Himalayas See the Taj mahal Raising a beautiful Family Stay abroad with Family Own a home in Bangalore Having and nurturing a daughter Falling off a plane – Skydive Bungee Jumping Backpack tour with a friend Piloting a microlight Own a business Snorkelling the Great Barrier Reef Rafting in the Himalayas Visiting DisneyContinue reading “My Bucket List”

Balance, Strength & Breathing

I fell quite a few times on my back over the past few weeks, none too fatal than falling face down as soon as I got off my bed early morning last week. My lips were bleeding and injured, luckily tooth were intact and getting up took a few minutes. My legs were weak asContinue reading “Balance, Strength & Breathing”

Emotions

A key symptom of MND is exaggerated response to emotions. Whether it is uncontrolled laughter or crying. These episodes last for a few minutes and sometimes also cause breathing difficulty to the point of choking. I have had many such instances in the past. While having lunch and watching a standup comedy, I laughed uncontrollablyContinue reading “Emotions”