By Daniel J. Vance MS, LPCC
Life lately has been trying for 50-year-old Suzanne Mohn of Fargo, North Dakota. Yet she somehow has held up relatively well considering everything.
For one, she said, “I have myotonic muscular dystrophy. My brother was diagnosed first and I'd had the same symptoms as him, such as hand cramping. For example, I would take hold of a jar and be unable to let go. I got the diagnosis at 27. Today, I'm also fatigued a lot and don't walk well. I've been going through a really tough time lately and have been at the emergency room about every two days due to intense muscular pain and cramping. My chest, arms, and legs are affected. People ask what it feels like and I ask them if they have ever had a charley horse. I have those in my body everywhere.”
Just prior to being diagnosed with muscular dystrophy, Mohn had boys born less than a year apart. Years later, they both were diagnosed with autism and, like Mohn, with myotonic muscular dystrophy. Regarding the latter, Mohn still remembers the moment her doctor, after reviewing blood tests, telephoned to say both her boys had muscular dystrophy. She immediately telephoned her husband and they cried together. When leaving home and trying to get to work that day, she was still so rattled by the doctor's unexpected call that she accidentally backed her car into the garage door. The Muscular Dystrophy Association describes myotonic muscular dystrophy as inherited and affecting the ability of muscles to relax.
As for her boys, today 24 and 23, she said, “Because of autism, they don't communicate (well) with people or make eye contact. They're in their own world.” According to the National Institutes of Health, autism spectrum disorder refers to a group of neurodevelopmental disorders characterized by “repetitive and characteristic patterns of behavior and difficulties with social communication and interaction.”
In addition to these disabilities affecting her and her sons, Mohn and husband Dave also raised two adopted children born with fetal alcohol syndrome who, as adults, now live in group homes.
To emotionally get through it all, she said, “I trust God. We do it day-by-day. Also, my husband is my rock and he's the most gentle person, a great husband. I couldn't have picked anyone better (to marry). He comes with me every time to the emergency room. I get overwhelmed some days.”
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