In the Blink of an Eye: My Battle with ALS

By Anthony Paola

"In the Blink of an Eye" follows one man's battle with ALS. He lives by these quotes, some of which are original Tonyisms:
"ALS is so ugly in so many ways."
"You have no idea how strong you are, until being strong is the only choice you have" – Bob Marley
"I can say F--- to ALS, our Government, and big Pharma."
"You will never know the value of a moment until it becomes a memory." – Dr Seuss
"Someday I won't have ALS and I will be free."

• Language: English
• Publisher: BookBaby
• Release date: Nov 10, 2023
• ISBN: 9798350927221

Book preview

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In the Blink of an Eye

My Battle with ALS

Anthony Paola

ISBN (Print Edition): 979-8-35092-721-4

ISBN (eBook Edition): 979-8-35092-722-1

© 2023. All rights reserved. No part of this publication may be reproduced, distributed, or transmitted in any form or by any means, including photocopying, recording, or other electronic or mechanical methods, without the prior written permission of the publisher, except in the case of brief quotations embodied in critical reviews and certain other noncommercial uses permitted by copyright law.

Contents

Acknowledgments

Foreword

June 14, 2019

June 21, 2019

June 29, 2019

July 23, 2019

August 15, 2019

August 2019, From Ashlee

August 2019, Facebook Post, Ashlee Bryant

September 22, 2019

September 29, 2019

October 31, 2019

November 16, 2019

December 10, 2019

December 19, 2019

December 20, 2019

January 7, 2020

January 12, 2020

January 20, 2020

January 31, 2020

February 7, 2020

February 19, 2020

March 11, 2020

March 19, 2020

April 12, 2020

April 13, 2020

April 27, 2020

May 1, 2020

May 5, 2020

May 11, 2020

May 31, 2020

June 12, 2020

June 16, 2020

July 3, 2020

July 22, 2020

July 29, 2020

August 31, 2020

October 20, 2020

November 19, 2020

January 15, 2021

January 30, 2021

March 6, 2021

March 11, 2021

May 10, 2021

August 8, 2021

September 4, 2021

October 21, 2021

February 25, 2022

November 16, 2022

November 25, 2022

March 30, 2023

May 31, 2023

June 18, 2023: Facebook Post from Ashlee Paola

June 26, 2023

Tonyisms

Acknowledgments

To my wife, LeAnn Riley, I love you dearly and thank you for your unconditional love and for never leaving my side. To my special friend Jeff Cummings, you are an amazing man and you made our lives a little easier Fidus Achates. To my brother, Joe, and his wife, Missy, thanks for being my handyman and for all those delicious dinners. To my sister, Gina, and her husband, Brad, thank you for all the pedicures, manicures, and helping with my yard. To Suzanne, for being my wife’s best friend. To my daughter, Ashlee, for your presence in my life and for bringing my grandsons to visit every week. To my friends Mark and Jamie, for my weekly Zoom visits, keeping me up to date on the electrical industry. To my friends Marv, Darell and Patty, Andy, Mark and Diane, Jan and Tami, David, Jeff, Connie, Kathy, Steve and Shari, Dan and Carolyn, Jon and Amanda, Dave and Maureen, Rob, Nick and Sarah, Kim, Jere and Susan, Craig, Debbie, Todd, Chuck, Ty, Bent, Lance, Paula, Kim, Robert, Brian, Lou, Kent, Karen, Scott, Casey, Trish, Martin and Perri, Ron, Steve, Aysha and Chloie, Phil, Jim, Mike, Zoey, Alisa, Joe, Bob, and Lisa, you all have shown me friendship and love. To Mary Myers-Hall for the first round of editing, I am grateful that you came into my life to start the process. To my niece, Emily, for bringing everything together into one document. Working with you made this very special.

Foreword

By Mary Myers-Hall

I did not realize how my life would change when my sister asked me to look at the writings of a friend of hers who had Amyotrophic Lateral Sclerosis (ALS) He needed someone to help with editing. When I read a sample of the journal writings I was intrigued, and thought I could help. At first, I was focused on the grammar, spelling, punctuation, sentence formation, and overall fluency. But as I continued to edit the writing, I started to see how emotional this was going to be for me just reading about Tony’s life. Tony Paola is a passionate, Italian guy who loves everyone in his life. Even if you were not in his life, he would likely still love you. His daughter adores him. His wife is his soulmate, who has loved him and cared for him throughout his ALS journey. Family members and dear friends, colleagues, and people he has met along the way all mean so much to Tony. He never imagined he would be struck with this debilitating disease. He now holds on to each day, not knowing when it will all end.

In his journal writings, you will experience his ALS journey, starting from the day he was diagnosed. He is also very candid about being a recovering alcoholic and talks about his Alcoholics Anonymous (AA) experiences. He tells the sweet story about how he met his wife and some of the adventures they have experienced together. You will enjoy the stories he shares of raising his daughter, whom he loves dearly, and how being Grandpa to her five sons brings so much joy and entertainment to his life. A career in management and sales was a big part of Tony’s life. You will read about that too. As debilitating as ALS is, it has not taken his spirit. His faith has kept him going amidst the pain and anguish.

As I was reading through each of Tony’s writings, I powered through them to make sure I got them back to him quickly to get his approval or make more changes. On a few occasions, I finished editing, took a deep breath, put my head in my hands, and just sobbed. What he was going through just broke my heart. He went from being a strong, successful, active man to gradually becoming weaker and losing almost all muscle control. He could no longer walk or feed himself. He began using equipment that recorded his voice for future days, when using his own voice would no longer be an option. He went from typing with his fingers to losing that muscle control and relying on an amazing machine that allows him to type with his eyes. Every task began to take so much more time to accomplish because of this muscle degeneration.

In this book, Tony describes, in detail, how he feels about the Food and Drug Administration (FDA), the government, and the corrupt pharmaceutical industry. The drugs that might have helped him slow the degenerative process of ALS got stuck in a trial phase that could last for twelve years. You will read about his fight in a court battle with the FDA and a pharma company to get his insurance company to cover a treatment. They would not cover the drug without FDA approval, and the FDA approval was not going to happen in Tony’s lifetime. He feels that Big Pharma and the government do not care about the patients; it is all about the money. His anger is evident regarding his fight with them, and his feeling of helplessness in this battle still lingers.

Tony talks about the man in the mirror; the changes his body and appearance were going through were not easy to accept. Every time he looked in the mirror, the image he was used to seeing changed. He became weaker. His journey has been difficult. His story will make you laugh and cry. What a beautiful soul. He has touched many lives, and hopes to touch yours too.

June 14, 2019

As I look back through my life, I have had many good and happy times, along with some tough and even ugly times. Once I decided to deal with the tough times in my past, I became a better person. Everything has prepared me for what I’m going through now. I am now able to live in the moment and accept what my life is today and what may come tomorrow. I have recently been diagnosed with ALS (Lou Gehrig’s Disease). I have faith, however, that God knows what he is doing. There is a long road ahead, but I will fight, and live in the present. My new motto is, I’m still standing. So I will live, love, and laugh today.

Thank you all for teaching me and being part of this journey!

June 21, 2019

From the time I learned that I had acquired ALS, I have had to deal with getting my life in order and preparing for death. That diagnosis took me straight into what I call, The Thirty-Day Whirlwind.

Now to move on with what is important: Tell my wife I love her as often as I think about it, which is every hour of the day, all day long. Sit next to my wife with the TV off, hold her hand, and just be in the moment, as often as possible. Talk and listen more. In our house, my wife is the princess; it is all about her, and everything I do is in her best interest. She is caring, loving, gorgeous on the outside, and beautiful on the inside. In my eyes, she is perfect. Whatever she says, wants, or does, I will respect, honor, and cherish.

Never get mad at anyone ever again; it is a waste of time, and time I do not have. Kids and grandkids need to hear the words, I love you, so tell them that every time you see them or talk to them; and that should be as much as possible. Do not wait for the call! Make the call every time you think about someone.

Parents are a blessing and can be your best friend once you get older. Call them often; tell them you love them. This is what they did for us growing up. Do not take them for granted; they might not be next to you forever. I am very lucky, as I have both of my parents walking this journey with me.

I have found out I have many friends. If you are my friend at this point in my life, you are my family and I love you, so I must tell you.

Money is not what is important in life; it is about time spent with you. We need money to live, so really, there is a balance. On second thought, fuck the money. I want more time . . . period! Time to get in the car and drive, get in the airplane, and fly with my best friend next to me. I have faith that the miracle is going to happen, and I will be here when it does.

Thank you for letting me be in the moment.

June 29, 2019

Today marks thirty days since I was diagnosed with ALS. I have two favorite mottos that I am living by. The first is, No white flags. It comes from Team Gleason, an organization that serves individuals with ALS. The second motto is, I’m Still Standing. This is the title of a song by Elton John. I still have faith that the miracle will happen. I must tell you that it has not been easy these past thirty days, getting our house in order. There have been a lot of tears. Let’s be real, my body is deteriorating and my voice is getting tired and changing. This stage could continue or stop for a while. No one really knows. Everyone who has had this disease or currently has it is different. I find it somewhat strange that I thank God daily for what He has given me. My prayer is that a cure will be found, and that if it is His will, to please take this disease from me. One more time in my life, I am facing a double-edged sword.

There is still more work to do, but it is time for a break. My wife deserves some Tony Time, fun and laughter. So, we are off on a two-week road trip with no schedule except getting to our destinations: the Grand Canyon, Phoenix, Las Vegas, and back home. She needs this, and I need to give her this trip while I am still able to travel. We also have plans for a second trip at the end of August.

I am hoping we will be able to lose ourselves in the days ahead and forget about what is happening. I just want to walk next to my wife and never in front of her. Sometimes, however, I will want her to get ahead of me so I can see how beautiful she is. Then my plan is to catch back up to her and take her hand, as we smile in our perpetual forward movement, like it used to be and should be.

I want to thank all the family and friends who have given up part of their lives to help us with their time and love. We cannot repay you, but will forever be grateful.

Thank you for letting me share my thoughts.