Jenny Smolinski, diagnosed in July of 2013 at age 35.
I first noticed I could not stand on my tiptoes on my right leg at almost exactly the same time I found out I was pregnant with my second daughter, Josephine, in September of 2011. Fast forward to May 2013, a month away from her first birthday, when I first realized that what was causing it and the gradual weakness that had begun to spread to my other foot, ankle, and upper legs was not a pinched nerve in my back; it was not multiple sclerosis; not Lyme disease or heavy metal toxicity. Unfortunately. My doctor (actually doctors—I saw so many that summer, praying for someone to come up with some other possibility) thought it was Amyotrophic Lateral Sclerosis, or ALS. This horrible monster of a disease was no stranger to me or my family—my grandfather, my mom’s dad, had passed away from it 30 years earlier.
It has been quite a roller coaster—both emotionally and physically—since then. The thing that terrifies me the most is the thought of leaving my kids (Josie and her big sister, Elizabeth, or Libby, as we call her) without their mother. I feel like I can handle most everything else…but not that. Day to day, the thing I find the hardest to deal with is the constant cataloging of every twitch, twinge, and tingle, wondering if it is a new symptom, or if I’m worsening. Mostly I try not to think about it and just keep moving along; adapting, sometimes yielding and accepting, but always moving forward.
People have told me that I’m brave or an inspiration; I don’t think I’m either of those. I just think I’m doing what anyone in my situation would do—loving and laughing and LIVING, and enjoying every precious minute with my amazing husband Doug, my darling daughters, and our loving family, friends, and employers. The amount of love and prayers being sent our way is nothing short of a miracle—and an incredible gift we have been given. Some people go their whole lives without experiencing this much love, and I’m grateful and honored that we have been able to.