Letters to the editor: Connecting through MS experiences

Words have power
Regarding the article “Control your bladder, control your life” (Fall 2022), many of the tips were helpful. However, I do feel compelled to make a suggestion regarding language. I am referring to the use of the term “adult diapers.” The physical and cognitive decline of any illness lowers one’s sense of autonomy and independence. Using a “diaper” further erodes that sense of dignity. I suggest that we refer to the products as adult disposables or disposable underwear. This might be seen as a trivial matter, especially considering how devastating and incapacitating MS can be. Nevertheless, words and how we use them have powerful effects.

Ella Ray, Pennsylvania

 

Experiences fewer but treasued
While I don’t have MS, but Sjogren’s-related CNS problems, I have found the two issues of Momentum I received to be informative. While it may not be a new idea, the article “A smaller life” (Fall 2022) helped me and my full-time caregiver husband to put a label on our situation. We have rich, abundant, happy lives, merely “smaller” than the “I-want-it-all” lives we pursued years ago. Opportunities and experiences may be fewer, but they are treasured. Thank you for your magazine.

Valancy H., Pennsylvania

Art is therapeutic
I loved “Painting away the pain” (Winter 2022–2023). Please pass along my gratitude to LaShonda Scott Robinson. Art in all forms is therapeutic, and she said it so eloquently.

Lisa Dehner

Doors a major obstacle
I enjoyed the article “Destination: accessibility” (Fall 2022) but felt you left out a major hinderance, at least for me. Since I use a walker, I have great difficulty getting through doors. Even the doctor’s office is not accessible. I would hope it could be mandatory that all new buildings have easy access, not just the front door but any door that someone needs to enter. Try it out the next time you see a door.

Carole Brennan, Illinois

Diagnosis got my attention
Thanks so much for Alexis Mott’s Fired Up story “Changing my life for the better” (Winter 2022–23). All too often, we see or hear folks being treated as if an MS diagnosis is akin to a death sentence. Much like Alexis, I honestly feel like my own diagnosis is one of the best things that’s ever happened to me. If fact, it may have saved my life, as it got my attention like nothing else could. It made me prioritize my life and take action on long-needed changes that previously were too easy to ignore. Yes, there may still be challenges ahead, but thanks to MS, I’m a much stronger person than I was before. Kudos to Alexis for finding her own strength and for sharing her story. Thanks, as always, for all you and the National Multiple Sclerosis Society do to keep us advancing forward.

Wes Dellinger, Texas

Interesting link
I found the article “Complex link” (Fall 2022) most interesting. In high school, I had a severe case of mononucleosis. Reading about the connection was valuable information. Interestingly, although I have had several MS specialist neurologists, not one has ever asked me about any episodes of mono or the Epstein-Barr virus. Considering there is now apparently a strong linkage between the EB virus and MS, I find it puzzling that that question has not been asked. Thank you for the increased coverage in Momentum on scientific research and findings. That’s what a lot of us want to hear: progress we can attach hope to.

Eileen Keiler

Stories make me feel connected
Regarding the Winter 2022–23 issue, I want to convey my gratitude for the stories on Fred Schwartz (“Up where he belongs”), Tom Bellas and Shelley Krebs (“A safe space”), Alexis Mott (“Changing my life for the better”) and lastly LaShonda Scott Robinson (“Painting away the pain”). I couldn’t narrow it down to one story, as all moved me in their own unique ways. Their honesty, rawness, resilience and acceptance deeply resonate with me. I’m a 41-year-old mama diagnosed at 35 with primary progressive MS, and things have progressed physically and personally, which have impacted my “glass is half full” approach to life. Such meaningful stories make me feel connected and not alone. After reading them, I know I’m allowed to feel all of this, but also truly realize that there’s still more out there for me to pursue that will provide purpose and hope. Thank you for spotlighting these for our community. I truly appreciate it.

Hannah Butler, Massachusetts