A Cure Out There Somewhere

2 Dec 2013

One day, my mother called me, once again irritated with my father. She said that he’d been ‘garbling his words’, and was doing it to irritate her. My mother was a bit harsh, to say the least, and had lived what I believe must have been a very hard life, though she didn’t talk about it much. This was the first indication that anything was wrong.

Dad started going to specialists, all of whom seemed to have a different opinion of what was going on. He was diagnosed with all sorts of things, including Bell’s Palsy, and I can’t remember what all else. I took him for a test where they put a camera in his throat and watched as he ate a cracker, then gave him some soda to drink, gauging how many swallows it took to make the cracker go down completely. As I watched on the screen, it was obvious that it was taking way too long, and it took an entire 8 ounce glass of soda to make one small bite of cracker disappear.

When I called my parents later in the week, the doctor had called and spoken with my father. He’d apparently told him they weren’t sure what was causing these troubles, but they were going to find out.

These things went on for nearly two years, finally ending with my father going into hospital overnight to have a feeding tube inserted. When I went to pick him up, the nurses taught me to suction his throat, and acted as if I should know that I was going to be doing this for him quite often. Dad kind of blew this off, as well, saying (and finally writing it down, as even I couldn’t understand him much, any more) that this was only if it was REALLY necessary, and probably wouldn’t happen.

We got home, he went to lie down, and I went into the living room to chat with my Mom. After about 15 minutes, I went to check on him, and found him gasping for breath. While I tried to revive him, my mother called for an ambulance which took him back to hospital.

I visited him the next day in the hospital. He was a bit nervous, and asked for his Librium, which he’d been on for years. The doctors had taken him off it during the last week since he’d lost so much weight. After he took the pill, he fell asleep, so I went to pick up my children and go home for a few hours. When I finally got home, I got the call that he’d passed away.

My mother told me that night that a doctor had come in the night before, and told her that he had Amyotrophic Lateral Sclerosis, or Lou Gehrig’s Disease. When she said that, he yelled at her to “GET OUT!!!” My father NEVER yelled, and I sort of filed this in the back of my mind.

My mother passed away 11 months later. My sister and I had to clean out the house and prepare it to sell, and I was in the basement, cleaning out my father’s work area. On his desk, he had a blotter, under which he’d hidden copies of pages from a book about ALS. Apparently, one of the doctors during the testing had given him the diagnosis, and he was unwilling to share it with the rest of us. He had also done a lot of other strange things during the two years that he was ill, and I just can’t imagine him carrying this burden by himself. He was a wonderful man, a terrific father, and I wish he’d have shared it with me, so he’d have had someone to lean on when he needed it most, like he was always there for me when I needed him. I miss him every single day.

There is so much research money out there going for things that aren’t as urgent as MND, I hope to do my part to change that. I know there is a cure out there somewhere, it just takes time, money, and research to find it, so maybe families in the future won’t have to lose their loved ones to these horribly debilitating diseases.

– Kat Hossler

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