I am Sheri

My ALS story started over 12 years ago. I was 39. My youngest had just started kindergarten and I was making plans to head back to teaching. While working out, I noticed my left foot just wasn’t cooperating. When I tried running, I felt like a limping duck. Answers didn’t come quickly. I spent years traveling across the U.S., meeting various specialists trying to figure out what I had. I had EMGs, MRIs, exams, steroids, IVIG and plasmapheresis. My incredibly slow progression, the fact that I had no fasciculations, and being a young female really didn’t match up. In the fall of 2015, I was finally given the diagnosis of ALS by the University of Michigan. Not having a real diagnosis to this point had really been an insurance nightmare. I was in a manual chair full-time and starting to notice arm weakness and slight voice changes, so the doctors found it easier to diagnose me. While I’m very thankful my disease has progressed so slowly, it also came with much isolation. What did I have and who could I talk with about my challenges, like how to get dressed, turn over at night and use a bathroom? I recall attending an ALS support group once and feeling so incredibly out of place and guilty for even showing up in my condition. (I’d driven myself there using hand controls in my van.)

Today I’m in a power chair. My hands still work a tiny bit, but I can’t eat or talk. Seeing the movement of I AM ALS is the first time I’ve had hope that a cure might come. No one wants ALS, but feeling part of a community sure makes you not feel so alone in this battle. It’s been a long haul — I’m weary — but I’d like to partner in any way I can with I AM ALS to end this brutal disease and pass hope on.