Welcome to my blog! The following blog is a chronology of my daily life post MND diagnosis. The latest blogs are listed first. If you want to read from the beginning of my diagnosis, please start from the bottom most post below
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 for…
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 with…
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 have…
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 twitch…
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 with…
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 looks…
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,…
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 Disney…
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 as…
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 uncontrollably…
Finding a cure for MND – Letter to our honourable PM Shri Narendra Modiji
Dear Honourable PM Shri Narendra Modiji I appeal to you as an Indian affected by a dreaded disease, namely Motor Neurone Disease (MND). 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, speak, breathe and…
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 to…
Homeopathy
I’m trying homeopathy medicine for the past 1 week. It involves chewing a tablet thrice a day. Its sweet to taste, so chewing is not a problem and the doctor has advised to take it after 30 mins of taking the regular allopathic medicine(rilutor, vitamins etc) The breathing and speech have improved. While I’m continuing…
Heredity
My mom was a doctor working for the Govt of Karnataka(state in India). She was diagonized with Parkinson at the age of 45 years. Although doctors did not give her too much time with the disease, she lived for 22 years and died at the age of 67 She was on allopathic medicine Amantadine and…
Riluzole
I was prescribed Riluzole – Rilutor and have been on it for over 2 months now. The doc has prescribed me to take 1 in the morning and 2 in the evening. It is hard to get Rilutor at the druggist stores in Bangalore (and I presume other parts of India as well) Since I…
Yoga and breathing exercises
I have been practicing yoga almost with a small break of 6 months over the last 13 years. I had to take a 6 month break in 2016 due to a shoulder dislocation surgery. I practise it thru http://www.sayyoga.in/. I personally like their approach as they ensure individual attention for all practitioners in a state…
Beach outing
We set out in 2 cars to the beach, which is about 30 min drive from home. I was on the wheel. Me, my wife, my cousins and 7 kids drove down at around 10AM. The shoreline(Padubidri) is clean and well maintained. We had the kids and us go out about 30 feet into the…
Feeling better
I’m feeling a lot better finally. My breathing and talking is more easier. I’m able to recite the speech therapy syllables a lot more per breath than before. The oil massage of the spine area and speech therapy exercises are continuing as usual. The daily dose of medicine – riluzole, vitamins – is continuing as…
Travel – Drive
The weekend was hectic. I drove my family for over 1000 kms over 2 days. We took frequent breaks in between and were still able to meet the google map time, that was displayed, when we initially started out. It was tiring. On Monday, I drove 12 hours with a few breaks in between. By…
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 its…
Acupuncture
My beautiful dutiful wife has been looking up alternative therapies. Acupuncture somehow stuck. I’m going to the clinic everyday for 30mins to get needles into my body, for the past 2 weeks. It’s too early to pass any judgement, the pricks hurt only slightly (pin pricks!) at the time of needle insertion. The doctor, prepares…
Stem Cell therapy
I have googled and consulted various experts on Stem Cell Therapy. I also have consulted the clinics which do stem cell therapy. While the clinics have ranged from being very bullish to some being slightly bullish in terms of the outcomes for the treatment, my neurologists have cautioned me against it. One of my neurologist…
Speech Therapy
I was advised speech therapy. The therapist suggested a range of tongue movements, sounds, words with multiple syllables (ex: deteriorate), reading a page aloud. She also suggested recording a min or two of a book and sending the recording to her. I have sent one recording out now. She has also suggested some exercises that…
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 for…
Why am I writing this Blog
Hi, My name is Swaroop Shastri. I’m from Bangalore, India. Needless to say I’m an IT professional working in a prestigious company in Bangalore! I’ve been recently diagnosed with MND Bulbar and I hope to write my journal regularly for all to see. Hopefully, my daily activities and symptoms will give an insight into the…
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Swaroop Shastri - Living with ALS / MND 