I am Russell Cowger

living with ALS


They diagnosed me with ALS on 3/21/2019. At that time, I was still running a couple of miles each day with a little bit of a limp.

My ALS story. Not really sure where to start with this story. I feel like I really started living my life about 11 years ago. Due to unresolved trauma I had when I was younger, I used drugs and drank in excess until I was 34 years old. When I quit using, life just started to happen. I got my 7-year-old daughter (at the time) back in my life. I got a career in the IT field and worked for a cardiovascular clinic in Mesa, Arizona. I oversaw about 150 employees and five sites. I met my future wife and got married in 2015. I was able to buy a house, and I went back to school. I had started running, working out, eating well and taking care of myself. My life was so good, I felt that anything I put my mind to I could accomplish. I love to push beyond my fears and achieve dreams. In 2017 I was in school, working full-time, and I went to the gym to lift weights for stress relief. I had been working out for about eight months. In December 2017, I started having these twitches (fasciculations) in my shoulders that didn’t go away. Over the next few months, the fasciculations made their way down to my triceps and biceps and sometimes in my forearms. My daughter said to me, “Dad! Your arms are freaking me out.” So I decided to see a neurologist in April 2018. … As soon as I saw the doctor at the Mayo Clinic, he was already thinking I had ALS. They did a bunch of blood work and gave me my second EMG which showed nerve deterioration. They diagnosed me with ALS on 3/21/2019. At that time, I was still running a couple of miles each day with a little bit of a limp, and I was still working full time. After I was diagnosed, my wife decided we should get a truck and a fifth wheel. So we sold our house, bought a 42-foot fifth wheel and a truck to pull it. I quit my job and filed for disability in July 2019. About the same time, my hands started to get weaker. … During this time, I went from being able to walk on my own, to using a cane, and now I use a walker. I feel that it’s pretty close to me needing to use an electric wheelchair. My hands are very weak and very atrophied. I can really only use my middle finger on my right hand to use my phone or computer. My voice has started to deteriorate, even though it’s still pretty strong. I have had some choking episodes, but at my last ALS clinic they taught me how to swallow and I think I’ve avoided choking. I’m currently still in the fifth wheel. I can get up and down the stairs okay. Not sure how much longer we’ll be able to be in the trailer though. … At this point I’m really scared about being paralyzed and being stuck in my head. I feel I’m close to not being able to use my hands or walk. My wife has to feed me since I can’t pick up utensils. I do still eat sandwiches and burritos.

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