Feedback from Quest readers and the MDA community
Letters to the Editor:
After reading the “Women and Wellness” article [in the fall 2014 issue of Quest; page 28], it kind of hit home. I have facioscapulohumeral muscular dystrophy (FSHD), and the exam tables are too high, and when they pull out the step, I tell them I am not able to step up. I would think after a while and there being two large hospitals in the town I live in, they would step it up and purchase exam tables in all their clinics for disabled patients. Just wonder why MDA doesn’t mention this to the hospitals that they have clinics in? Maybe you could find what clinics/doctors have accommodating exam tables and refer them to MDA patients. Sounds as simple as just having one accommodating table in each of the hospitals/clinics, but as we all know that doesn’t work, especially when profits are more important than a patient’s wellness.
— Barb Slater, West Des Moines, Iowa
Editor’s note: More than one female Quest reader noted that this story, about the persistent problems women with neuromuscular diseases encounter during gynecologic exams, really “hit home.” MDA is aware of this important issue and will continue to investigate better solutions with all of our health care partners. But as the story suggests, until local care facility catches up, it’s important that all women advocate for their needs; the preventive care you’ll receive with such checkups is too important to go without.
Travel and fashion, please!
Quest seems to be expanding its articles to include solution-based ideas. I’d love to see a section about travel locations/vacation spots that are completely wheelchair-accessible. Perhaps Quest could invite readers to submit information about accessible areas (hotels, beaches, parks, etc.) they have visited and recommend. This would be such a beneficial addition to the magazine. Additionally, while mainstream magazines choose not to address the needs and lifestyles for those who are physically challenged, Quest could really shine by dedicating a small space in each edition to fashion. While I’ve occasionally seen an advertisement for adaptive clothing, this is an area that both men and women find challenging, and we like to shop and look great, too!
— Leah McClain, Carmel, Ind.
Editor’s note: The editorial team behind Quest strives to create and share a mix of stories in each issue that resonate with all readers across the MDA community, including individuals living with one of the 43 neuromuscular diseases covered by MDA, their families and caregivers. To meet this goal, we do often prioritize stories that share and explain research and medical updates as well as general quality-of-life issues for our families. But we know that less serious lifestyle stories are still important to you — and we love them, too! — so we also try to cover such topics, even if they’re just in sidebars to larger stories. But we also will be devoting some larger stories to topics like travel in 2015 and beyond. We value your input immensely, so please keep any and all story ideas coming!
Editor’s note: In the fall 2014 issue of Quest, writer Colleen Whitney Nichols in the From Where I Sit column (“The Best-Worst Thing,” page 50) discussed her process for coming to terms with a late-onset diagnosis of type 1 myotonic muscular dystrophy (DM, or MMD) — the same disease she has watched her father battle as long as she’s known him. The story touched many readers, including this one:
Dear Ms. Nichols,
As a 58-year-old father of two [who is] living with FSH muscular dystrophy, I wanted to tell you how much I enjoyed your article in Quest magazine. Your writing style and personal feelings hit home with me, as I, too, have a 20-year-old daughter. Thanks again for a great article.
— Walt Thebo, Lowell, Mich.
Survey Says ...
In line with the last issue of Quest, we called on all readers and members of the MDA community to provide feedback on the magazine and MDA’s other communications with you. The response was overwhelming. We are continuing to mine the results of the survey as we work to make Quest even better based on your feedback. Thank you to everyone who took the time to voice his or her opinion — your collective ideas have and will continue to shape our stories and editorial mission.
Quest Subscription Changes?
If you are registered with MDA and need to update your address or cancel Quest, contact your local MDA office by calling (800) 572-1717. Give the operator your ZIP code so you can be connected to the appropriate office. Personal patient records are maintained at your local MDA office, so it’s important that you notify the Health Care Service Coordinator (HCSC) in your area with any changes to your information. Also visit mda.org/locate to find contact information for your local office.
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