My father, Robert (Bob) Gussmann had ALS for about 8 years. It was a long, tough battle. Things started out slow, with things that you wouldn't think much of, like tripping over his own feet a lot. It got a little worse over time and soon he progressed to using a cane. He began to feel a lot of twitching in his muscles, especially his legs. Soon after this began he was diagnosed with PLS (Primary Lateral Sclerosis) since it was only effecting his legs. As the tripping and muscle deterioration got worse my Dad had to start using a wheel chair a majority of the time. Over the years his muscles got worse and he was confined to his wheel chair. The muscles in his arms began to get weaker as time went on until eventually he was unable to use his hands much at all. He was in a motorized wheel chair for about two-three years. He needed to adjust himself in the chair throughout the day as it got very uncomfortable sitting in the same position for a prolonged period of time. He found it is more comfortable to sleep in his chair and had not slept in bed often. My father eventually had a hospital bed delivered to the house which adjusts on its own based on his weight distribution, this was a lot more comfortable for him to sleep on. About 7 years into his diagnosis, my father had a swallow test completed that determined that he was not able to swallow foods or liquids without aspirating.....the doctor recommended a feeding tube. My Dad had a feeding tube put in in late February 2017 and didn't have whole foods or liquids since. His speech was very slurred and continued to get worse, it was very hard to understand him, which was frustrating for everyone. It pained us to have him struggle and use all of his energy to repeat himself just so we could try and understand what he was saying. Soon after he started using the eye gaze machine that senses what your eyes are looking at and spells out words and speaks them for you. My Dad was living at home in FL with my Mom who cared for him. They had every piece of equipment you could think of to try to make it easier for them (Hoyer lift, oxygen machines, feeding tubes, walk in shower, motorized wheel chair, ramps, special van with motorized ramp, etc.....). Although they had these things to make life easier it was still unbelievably hard. It was hard to watch my father, who NEVER complained, go through this and it was hard to watch my mother have to care for him in ways she never thought she would have to. In October 2017 I received a phone call from my mother that my Dad was not doing too well. I made arrangements at work and flew down to Florida to be with him. I spent a few weeks in Florida helping my Mom care for my Dad and spending time with him. We had a nurse come to the house throughout the week to check on him, the last two weeks of his life he was pretty unresponsive and was on a breathing machine. Not long after my Dad passed away. This 8 years was the hardest me and my family had to go through, watching my Dad slowly deteriorate, knowing what the outcome would be. I wish there was more that we could do to help him and to stop this terrible disease!!! In memory of my Dad my family and I will be participating in this walk and raising money to help with the research needed to find a cure for ALS.
Please consider walking with me or sponsoring me. With your help, we will be able to make a difference in the lives of people affected by this disease.