Keep on Ticking

By Hira Ahluwalia

Keep on Ticking One Man's Approach to Chronic Progressive Disease.

• Language: English
• Publisher: Hira Ahluwalia
• Release date: Jan 3, 2022
• ISBN: 9780578249346

Book preview

Keep Ticking

One Man’s Approach to Chronic Progressive Disease

Copyright © 2021 by Hira Ahluwalia

All rights reserved. No part of this book may be reproduced or transmitted in any form or by any means without written permission from the author.

Or in other words, don't you dare, I will run you over with my super turbo charged power wheelchair!

ISBN 978-0-578-24934-6

Publisher: Material Selection Resources Inc.,

Pennington, NJ

Printed in USA by 48HrBooks (www.48HrBooks.com)

You are an amazing person and you have endured so much hardship and suffering with this terrible disease. Yet with all the difficulties you have managed to keep going and be cheerful and content. You truly are an inspirational person. Keep going. Love You big Hira.

- Maggie (Irish Rose)

I dedicate this book to my beautiful wife, Maggie and our amazing sons Arjan and Kieran. Also to future grandchildren, hurry up lads! This book is also dedicated to my father, Field Marshall PJ.

In loving memory of my dear mother.

Journey Outline

Foreword. It is an honor for me to have my friend, pulmonologist George Gushue, write the foreword. George is an important member of my care team

Preface. I provide a more appropriate name for ALS and discuss the purpose of the book

1. Paddy O’Hira and Irish Rose. Two people born on different continents, different culture and religion, were destined to get married. A brief story about meeting the love of my life. My first, my last, my everything

2. Doctor Metals and the Human Body. I use the analogy of the human body to describe my career as a problem-solving materials and corrosion engineer. My background as an engineer has been beneficial in focusing on finding solutions to the many challenges of ALS

3. The Red Zone. Living with ALS is fraught with challenges. I describe my current health status and why meticulous care of the pulmonary system is critical to life

4. Bloody Hell! My Back! Were the old injuries a precursor to ALS?

5. The FSD Challenge Begins. I describe the onset of leg weakness and the relentless pursuit of determining the root cause of my health problems

6. Self-Diagnosis of FSD. The realization that my condition was serious and life threatening. The oh crap moment!

7. 911 Emergency. The dramatic progress of the disease leads to an emergency. I describe the events that took place during my hospitalization and the following year

8. Risen from the Dead, by Arjan Ahluwalia, M.D. My son describes my death experience, and against all odds surviving due to dramatic intervention

9. The New Reality. My life altering experience meant relying on sophisticated medical equipment, and the miracle of science

10. My Maverick Dad, by Kieran Ahluwalia. Kieran, my son, describes some of his memorable times with me

11. The Pandemic Year. What Lockdown? Living with ALS means you are always in some form of lockdown. I describe the precautionary measures that we implemented

12. A Day in the Life. A snapshot of a typical day in the summer. High maintenance care is needed to keep me ticking

13. You Will Never Walk Alone, by Maggie (Irish Rose) Ahluwalia. My Irish Rose, provides a glimpse of her emotional feelings during the perilous journey

14. Mental Immunity is Necessary. Tips on what can be accomplished by using the thinking brain to tackle any problems in life

15. The Final Act. All good things come to an end. My thoughts on dying

16. Hira, My Special Brother, by Kuljit Hunjan. My sister describes my early years and the emotional reaction of the family

17. Hira, My Friend and so Much More, by Bruce Downie. Bruce my little brother describes how my ALS diagnosis forged a stronger friendship

Appendix. Summary of diagnostic tests. I don't expect you to read the tables in the appendix unless you are a physician or otherwise crazy. You will appreciate the quest to find answers. In my opinion, the diagnostic tests provided diddly squat useful data

Acknowledgements. One page does not convey how grateful I am for the encouragement and assistance provided during the preparation of the book

Foreword

When one reflects on the numerous personalities encountered during their life, a few stand out heads and tails above others. This book is about one of those memorable souls.

I initially met Hira during a pulmonary consultation requested by his primary care physician. During the interview, his proper and respectful demeanor contrasted sharply with the underlying strong personality that was peeking through. This relatively young man had recently been given the diagnosis of a progressive neurologic disease without a known cure. At the time, he was experiencing respiratory issues requiring careful attention. I was impressed how this man of science approached his complicated illness not as an overwhelming problem that couldn’t be solved, but rather as a series of smaller problems, each of which had its own best, if not definitive answer. Dr. Metals was an expert in the process of corrosion, and he had built a successful consulting business solving complicated problems for the manufacturing industry. I would jokingly refer to him as an old dependable watch or the Energizer bunny, nicknames that he accepted proudly, and actually reveled in.

Viewing him from behind while he was sitting in his bedroom (which also served as his office and private ICU), you could easily have mistaken him for his personal hero, Stephen Hawking; computer, wheelchair, and all. His sharp wit was dampened only by the time lag it took for him to visually manipulate his computer to respond. To address this problem, he made a list of template responses (and insults) that required only a quick point and click with his eyes.

I could identify with his every day is a gift mentality, having gone through my own life changing experiences. But as humans, even the strongest of us can be challenged by what seems to be an insurmountable bump in the road. While I never observed Hira sink into a state of depression (although I’m sure there were times), I could tell when things were not going well, because he would let out a string of obscenities that would cause the devil to blush.

For now, the fight goes on, and it ain’t over ‘till it’s over. I suspect that after the completion of this book, he will start a sequel, write a textbook or two on the corrosion of non-ferrous alloys, grow his active consulting business, and figure out a way to perform virtual Irish line dancing with his lovely wife, Irish Rose.

This book describes one man’s approach to chronic, progressive disease, but in reality, it is a primer on how to address any number of life’s seemingly insurmountable problems.

You haven’t heard the last from this guy!

George Gushue

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Preface

I am living with ALS (Amyotrophic Lateral Sclerosis) aka Lou Gehrig’s disease, aka MND (Motor Neuron Disease) aka FSD (F****** S*** Disease). Forget the asterisks, let’s call it what it is... Fucking Shit Disease. That is the most appropriate description.

FSD is a cruel progressive disease that strips your dignity and self-reliance. The rate and nature of progression can vary from person to person. In my case it was not a linear decline but was punctuated by two major downward catastrophic events that could have resulted in death. It is like having a front row seat to your slow demise.

Despite all the pain with a disease that we have no control over, do we have to suffer too? It is important to realize that we have a thinking brain, our supercomputer, and we have more power than we think. You have to avoid the vortex of despair, once you get sucked into the vacuum there is no escape. You have to mentally inoculate yourself. I have never complained over matters that I have no control over and try to focus on finding solutions to the circumstances that I can control. I can feel sorry for myself and be angry, but how would that resolve the suffering, it will only result in bringing my family down with me. Under no circumstances am I going to let my loving family be dragged down.

The founders of the Ice Bucket Challenge, Pete Frates and Pat Quinn who passed away from complications of ALS recently, did not feel sorry for themselves but instead raised over $250 million for research. The famous physicist Stephen Hawking’s work is well recognized, he did not give up his quest for answering mysteries of the universe because of the progression of his ALS. One quotation from Stephen Hawking states, On Life. One, remember to look up at the stars and not down at your feet. Two, never give up work. Work gives you meaning and purpose, and life is empty without it. Three, if you are lucky enough to find love, remember it is there and don't throw it away. I have used this quotation at the bottom of every email I write. I read this quotation every day and it inspires me to enjoy every breath I take, or more accurately, my ventilator takes for me!

On one occasion in the ICU at the hospital, Dr. Gushue my pulmonologist said, Hira, you are like an old watch. You take a licking but keep on ticking. That expression resonates with me. FSD has definitely given me a licking and continues to do so. I have no choice but to keep on ticking.

This book describes the licking that FSD has given me and why I have to keep on ticking. Along the way you hopefully get to know me and my amazing family.

I feel blessed to have a partner, my wife at my side over the last 35 years and her remarkable love, support and care gives me the strength to live every day with a smile. Magdalene aka Maggie, aka Irish Rose, has been beside me every step in the journey. As you read this book please recognize that this disease has not just affected me, but my whole family. Our two boys Arjan and Kieran are truly amazing young men. Their resilience and loving action-oriented care is to be admired. Without my family, I would not be here to tell my story.

This book provides an insight into my approach to coping with neurological chronic progressive disease. Hopefully, some of the ideas can be useful for you when dealing with the many crises that inevitably occur in everyone's life.

When I was first persuaded to write an account of my FSD journey, I was hesitant. I did not want to start this project if I could not complete it should I succumb to this disease. I decided to be very focused and just write about the main events and cut all the bullshit.

The process of writing this manuscript is challenging, especially if you can't use your hands or talk. Technology to the rescue. I use eye-gaze computer technology, where I use my eyes to type every single letter and word. After I write a paragraph, I send it to an email address that we set up for the book. This is when I require assistance. For the first few chapters of the book my son Kieran would assemble my paragraphs into the chapter using Microsoft Word.

I did not initially realize that this process was going to be stressful for Kieran reading my recollections of events. After recognizing this, we agreed that he would not play an active role in further chapters. My best friend Bruce Downie stepped up and took over the assembly of the chapters and using video conferencing, we edited the manuscript. Although my wife, Irish Rose encouraged me to write the book I minimized asking her questions about events to ensure I do not cause Post Traumatic Stress Disorder (PTSD).

The lyrics to the classic song by the Beatles, HELP, describes how I feel about FSD. It could be the theme song for FSD. Part of the lyrics of the song are