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”
Tag Archives: MND
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”
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”
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”
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”
Life – Purpose
Human beings are the most intelligent life forms in the known universe. We are the most accomplished and blessed with strength, form, intelligence, cleverness, cunningness, common sense, self awareness et al. Why is it so? In the millions of years of evolution why did this (known) universe hit upon such a successful species ever toContinue reading “Life – Purpose”
Sleep and Twitching
I do have a sound snoring sleep! My snoring has increased in volume over the past few days. Sleeping on the side, usually reduces the decibels, vis-a-vis sleeping on the back! Some nights I do get random dreams and wake up. Sweating is profuse as well at around 3AM most nights. Not sure if itsContinue reading “Sleep and Twitching”
MND Diagnosis
Strength does not come from physical capacity. It comes from indomitable will — Mahatma Gandhi. To start with, I’m a 43 year old male and was diagnosed with Motor Neurone Disease(MND) in late October 2019. Below is the run-up to the diagnosis and treatment. I first noticed that the tongue was not rolling enough forContinue reading “MND Diagnosis”
Swaroop Shastri - Living with ALS / MND 