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Moments I’ll Never Forget: Whitney Parnell’s Story

Whitney Parnell is a current board member. She generously contributed the story below about her father, Steven Stern, and his ALS diagnosis. Steven passed away in 2015.

When someone you love is diagnosed with ALS, it launches you on a journey that’s full of milestones. Some of those milestones happen secretly; you don’t realize you just lived a moment you’ll remember for the rest of your life. Here are some of those milestones I experienced as my dad was diagnosed with ALS – moments that I’ll never forget.

I didn’t know much about ALS until it was listed as a possible cause for the muscle weakness my father was experiencing. He was only 48 years old, and had started to notice that his golf swing distance was shorter. He’d played a lot of golf in his life, so noticing negative impacts to his golf game was frustrating, and even more importantly, it was messing with his bragging rights. You see, while he was often the nicest guy in the room, he also liked to be the best. Some called it a “quiet confidence”, but those of us who were close to him called it the “I know better than you” look. It was kind of a smirk, with laughter in his eyes, but it was never mean. I’ll never forget that look. I caddied for him a few times when I was young and I knew without a doubt that he used that “I know better than you” look on the golf course. So when his swing was coming up short, it bothered him. Then he noticed his head felt heavy when he would ride a bike. After that, he noticed his voice changing. He started to notice he couldn’t hit the notes he could normally hit. He was an amazing singer and had a beautiful, rich, tenor voice. I’ll never forget his voice. I can hear it so clearly when I think back on the times we would sing together. 

These symptoms were all so out of the norm for your average, healthy 48 year old, but to the rest of us, he actually just looked like he was losing weight. He’d always been a big guy, but his neck and chest started to really slim down. I remember one day I saw him walking toward me at church and I could clearly see his collar bone. I mentioned it to him, and he said “I know, I’m really not sure what’s going on. I’m not doing any diets or anything.” He looked worried. I’ll never forget that first time I saw him worried. He began seeing doctors. One of them thought it was a rotator cuff issue (Dad probably led with the golf swing information as his top #1 concern), and gave him a cortisone shot. Of course, the muscle weakness continued. He then went to a neurologist and after a couple visits, it became obvious to him and my mom that something serious was going on. That’s when we started hearing the term “ALS” thrown around. My mom texted me one evening, saying something like, “they even threw out ALS as an option.” I’ll never forget when I first searched “ALS”. I had my laptop with me and I googled, “what is ALS”. The first phrase I read will forever be branded in my mind. “ALS is a fatal disease with no cure. Patients are usually given 2-5 years to live.” Everything changed when I saw that.

Dad continued seeing doctors and getting referrals and tests. We kept hoping results would come back proving it was something, anything, other than ALS. It was kind of like a crescendo – every appointment kept leading to what would be “the appointment” when we would finally have a label for whatever we were facing. That appointment finally came on a snowy day in February. We had to travel to Portland for it, and we all knew it was likely that we’d get an ALS diagnosis that day. On our way, someone got mad at how Dad was driving and flipped him off. I’ll never forget what he said. He just quietly said to himself, “if only he knew what I was going through today.” We went to the appointment and that’s when Dr. Goslin looked at my dad and said, with heart-breaking empathy, “Steve, at this point there’s nothing else I can rule out. We’re going to have to go with a diagnosis of ALS and watch your symptoms.” So that was it. The official diagnosis, unless proven otherwise. We sat there while she told us more, and they did a few tests to establish his baseline strength levels so they could continue monitoring him. We decided to go get some lunch after that. We sat at a brewery in downtown Portland, my mom and dad and my husband and I. Dad raised a glass and said something about fighting this disease together, and I’ll never forget how our glasses clinked. Unlike the other milestones, this one wasn’t sneaky, where we didn’t realize it was an important moment. It was like a crack in the ice. There was no going back. 

These are some of my earliest memories of our journey with ALS. There are many other milestone moments I remember, but I think these first ones are really important to share. They’re important for people who’ve never faced a serious diagnosis, so the reality of what others are facing can be a little more clear. They’re important for those facing an illness, so they can know they’re not alone and others have walked similar roads. And they’re important for me to recall. Every time I do, these memories have a little more color than before, and I’m filled with a bittersweet gratitude. Someday I’ll share the rest of the journey, but for now, these are just a few of the moments I’ll never forget.

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