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ALS Worldwide
1800 North Prospect Avenue, Suite 4B
Milwaukee, WI 53202

ALS Worldwide
September 08, 2016

Jim Reboudo

"I remember the day before my Dad was officially diagnosed with ALS like it was yesterday. I went to Sluggers and Putters, an outdoor activity center in Ohio with my boyfriend, Zachary. We enjoyed an evening of mini golf, bumper cars, pizza, and arcade games. Oh, how I wish I could go back to that day; that time in my life when my biggest worry was what I would be eating for dinner that evening. My Dad, Jim Reboudo, was diagnosed with ALS on September 3, 2013 after undergoing many tests and procedures for much of that summer to pinpoint why he was having difficulty walking. It just didn't make sense to any of us. Usually the fastest walker and the one being told to slow down when we went anywhere with him, my dad had been walking slower and slower as time went on. He would come home from work and have to face my mom with bruises and scrapes on his cheeks, telling her that he had lost his balance getting out of his truck and couldn’t catch himself before hitting the pavement. The doctors originally thought he had tendonitis and bursitis in his hips and instructed him to take some time off of work to rest.

However, when that didn't help things, he went to the Cleveland Clinic where he saw Dr. Gordon. Dr. Gordon was very compassionate and with a heavy heart, told my mom and dad the devastating news: You, Jim, have ALS. Amyotrophic Lateral Sclerosis. Lou Gherig's Disease. You are 57 years old. You may have 2-5 years to live. There is no cure. And just like that, life as I knew it would be changed forever. At first, we looked at my Dad's death sentence with hope and positivity. We were a family; my Mom, Dad, brother, and I. We would face this together. We read up on ALS. We watched Tuesdays with Morrie. My Dad even believed he could beat it. That surely this would not take his life, the man who was loud, outgoing, and filled the room with his laughter and bright smile. But soon, things began to change. My dad was falling more, walking slower, holding his forks and pens differently. It was difficult to process and to watch, especially since none of us had ever met someone personally who had lived with this disease. We had heard stories or talked to people who knew people, but this was all new to us, and it was all very scary. Not one to cry, it really stood out to me when I came into my parent's bedroom shortly after my dad was diagnosed and just laid with my mom and dad for a little bit. When my dad got up to go to the bathroom, he closed the bathroom door, and all of a sudden you could hear his crying hysterically. It was something I had never seen come from my dad. To know what lay ahead of him must have been so hard for him to process, but after the initial shock of it all, my dad would go on to say many times over, better me than any of my family.

My dad's progression started with a cane which then lead to a walker, and then to a motorized wheelchair, all loans from the ALS Closet, who were tremendous helps during our fight. First, my dad was able to eat on his own but then he needed help in making his food, followed by needing help in being fed, which ultimately resulted in making all of his food and then feeding him. It was tough seeing my dad lose his independence. My dad was very, very particular about how he did things, so to lose control and let others do things for him was challenging, especially since we never really 100% probably did things as good as my dad could have done for himself. But food was not the only thing. Soon, our house was filled with people; hospice workers, caretakers, doctors, counselors. You name them, my dad was approved to have them help him and us take care of him. He needed help going to the bathroom, being bathed, walking, moving. It was all so overwhelming and time consuming and 'me time' was a thing of the past, as much of my time at home became time spent caring for Dad. It was difficult, especially when my Dad's ability to communicate became almost nothing.

My Mom understood him the most, but even then, it was tough for her to decipher what he was trying to say sometimes. Eventually, my dad was limited to being in bed all day. He opted not to go on a ventilator or have a feeding tube, and after Christmas of 2014, it was a slow and painful process in watching my Dad deteriorate and waste away, as he could hardly swallow foods, even when blended in a mixer, and he could no longer go to the bathroom sufficiently. My Dad's desire was to remain at home throughout the course of his illness, and we successfully did that for him up until his last 4 days of life. He was taken to a hospice/respite stay facility in Medina, Ohio when he got really sick and could not swallow or breathe very well on his own. They medicated him heavily for the last few days of his life and took him off of food and water altogether. Many friends, family members, and loved ones came to visit and to say their goodbyes to a man who had once brought them so much joy, happiness, and positivity. It was as if the same man who was always willing to lend a hand to someone in need, was telling us, if only silently, that his time on earth with us was coming to an end, but that he had left us with many strong memories and life lessons to help see us through the rest of our days without him.

Jim Reboudo was born on May 12, 1956 and passed away on February 12, 2015. No amount of words can adequately describe the journey we took in watching my dad go from being a hard-working man who provided for family to being confined to his bed for the last weeks of his life. Equally, you have no idea what it feels like to lose a parent, a husband, a son, a brother, an uncle, etc. until it directly affects you. Experiencing that loss is magnified 100x more when they have suffered from a disease as horrible as ALS. I would never wish it upon anyone. However, after all my Dad went through in his fight, it is comforting to know that he is no longer suffering. That, Lord willing, he is up in heaven, restored to full health and able to walk and talk freely again. And that while I will no longer see him here on earth, I have the hope to see him again one day, as we are reunited and can share in the glory of all things new. It will be as if no time has passed between us. But until then, I will carry on his legacy. I will share my father's story and I will keep his memory alive in my heart. For I am my father's daughter, and it is my hope that when people look at me, they see all the good parts of Jim Reboudo."

- Jennifer Reboudo 

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