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Letters to the editor: Readers sound off on living with progressive MS

Not the only one
I really enjoyed the Winter 2020–21 issue of Momentum. Although I was diagnosed nearly 10 years ago, I often look back on those early days of hearing the doc’s conclusion. I so yearned to feel like, “I’m not the only one.” Hearing the occasional story of someone thriving with the disease is what often reassured me. I didn’t know anyone with it. I felt “too busy” for it. I certainly wasn’t going to tell anyone I needed help. Today I’m an avid fly fisher (which is such a healing, tranquil and interesting sport) and feeling amazing! Most days I forget I even have MS.

Sarah Zoric, Vermont

Research for progressive MS
I wanted to thank you for this article on the medical research that is specific to progressive MS (“Halting nerve damage,” Winter 2020–21). I have progressive MS, and I find there is so much research for relapsing-remitting MS. This article about the research being done for medication that might stop the neurological progression of progressive MS is really the first hope that people that have this form of MS have had.

Carole Thuesen, Montana

Steep learning curve
The article “Roll with it” (Winter 2020–21) struck me as very personal, as do most of your articles. I have had MS since 1983. I served almost nine years as a pilot in the Air Force, then 20 years as an airline pilot. I have taken most of the medication out there and now use a walker at home and a wheelchair out of the house. It has been a steep learning curve for me, as I have gone from college baseball player to pilot to cane walker to wheelchair rider on my own (with help from my wife, an OT). I still travel throughout the country, as well as Canada and Mexico. Getting the chair and baggage through the airport by myself is a challenge most times. The article really hit home. I hope others with MS know that even though it is frustrating, it is doable to travel by yourself. Your magazine inspires me to keep up the fight.

Mike Pompoco, Ohio

Finding my outlet
Amy Black’s article “MS as a cure for mediocrity” (Summer 2020) felt like a page from my life. Like her, when I was diagnosed in December 1997, I took it in stride. I thought, “OK, now what?” My folks and my future ex-husband were shocked enough for all of us. I didn’t see it as a death sentence. However, I was flooded with information, pamphlets and the works, courtesy of my family. Like Amy, my personality fit MS. I was a loner. I stayed home a lot. The only activity I did was go to work, which felt like a monumental undertaking most days. I needed to do more than that — make use of this body before it went sideways. Then I found my outlet, the Walk MS events. They were my purpose and my joy for 18 years. We formed a team, named Kelly’s Heroes. It was a way for my family and friends to be involved and to stay connected, until the walks were canceled. I’ve since found other outlets. Now I’ve adopted the “outing reconnaissance” Amy spoke of. How big is the store? How far away is parking? Where are the bathrooms? Where I used to dread doing anything, I crave it now. But I wanted to thank you, Amy. Your article made me feel I wasn’t so alone or different from other people who have this “fictional character’s disease.”

Kelly Westerdahl, New York

Tags: Spring 2021