Feedback from Quest readers and the MDA community
Editor's note: You could be in Quest! We want to hear from you — share your ideas, experiences and comments with other Quest readers. If you have a letter to the editor that you'd like to submit, be sure to send it in now. See below for more details. Also see below for details on updating your Quest subscription.
Letters to the Editor:
After I was misdiagnosed with myasthenia gravis, I subscribed to Quest magazine right off the bat.
Two years later, I was correctly diagnosed with secondary progressive multiple sclerosis, then subscribed to MS magazines, but I kept my Quest coming in. First, I am interested in all the articles, and more importantly, I found that many articles and/or advertisements are related to or helpful to me still, so I would not want to miss any issues.
I just received my Fall/October-December Quest magazine. I didn’t get past page 10 without finding two different articles that I needed to know more about (“Vans for Multiple Power Chairs” and “Flu Season is Near”). I only stopped reading to email you and let you know how important your magazine is to me, even though my diagnosis changed. Thank you for the help I am still receiving.
— Cindy Lacy, Henderson, Nev.
In need of MG resources
I have been receiving Quest for several years, as I have MG [myasthenia gravis]. I have written twice during that time asking you to include an article about MG with general information and a comparison of symptoms, treatments and prognoses between MS, ALS and MG. I know of only two other people [with MG] and they agree — they know hardly anything about the disease and do not know how to obtain this information.
I eagerly await each issue of your magazine but am disappointed to see the initials MG casually mentioned once per issue.
Would it be possible to do us (those with MG) a favor and enlighten us on this disease we have and know so little about?
I would appreciate hearing from you regarding this request. I have spoken to three doctors who have never had a patient with MG, and [they] just say it’s an autoimmune disease.
— Martha C. Beebe, York Haven, Penn.
Editor's note: The Quest team strives to cover relevant updates for all of the 40-plus neuromuscular diseases under MDA’s umbrella. As it happens, Quest featured a Web-exclusive package on myasthenia gravis (MG) in June 2013 that sparked a lot of positive reader feedback. That story can be found online in our Quest archives at quest.mda.org/news/mg-can-immune-response-be-tamed. Readers also should consult MDA’s online database of neuromuscular diseases for specific information by disease.
Power of truth
Reading the article in the October 2013 Quest titled “Beyond Willpower,” by Darcy Leech, rang true for me and confirms what I think is the most important thing that we, as caregivers, can do for people with type 1myotonic MD. Adjusting our expectations as this disease slowly advances can be difficult, but it’s an important part of caregiving for MMD patients. Understanding the nature of this complex disease can help us become better caregivers and give our loved ones what they really need beyond just physical assistance — encouragement, acceptance and the gift of being a true partner in their MMD journey. I liked the Quest article because it does not sugarcoat the reality of caring for someone with MMD1.
The fact that this disease runs in families and that many are caring for multiple people with it is no small feat. As I mentioned, I care for my twin 13-year-old grandsons who have congenital myotonic MD and my daughter with the juvenile-onset type. But I am in contact with other families where a husband or wife is caring for not only his or her children but his or her spouse, as well.
Stories such as Darcy’s are an inspiration to those of us who are in the trenches, and reinforce our compassion and dedication to making the lives of people living with MMD as fulfilled and independent as possible at each stage of this disease.
— Cecilia Stearns, San Jose, Calif.
New Look of Quest in Print — We Want To Hear from You
This Winter 2014 issue of Quest marks a new chapter for MDA’s flagship publication in print. Our goal with this redesign is to provide you, our dedicated readership, with a more contemporary and visually dynamic resource through which to present the research news and broader narratives that matter most to MDA families and supporters and all those affected by neuromuscular disease.
You can still expect the same high-quality, relevant content that you’ve come to expect from Quest. But we hope that this refreshed look will further advance the MDA mission of educating, engaging and inspiring the MDA community to help fight muscle disease. But tell us what you think, and we’ll share responses in the Mailbag department in upcoming issues.
To share your comments and feedback, write to: Mailbag, 3300 E. Sunrise Drive, Tucson, AZ 85718-3299. Or email letters to firstname.lastname@example.org with "mailbag" or "letter to the editor" in the subject line. Letters must be signed and contain a daytime phone number, city and state, and be no more than 250 words. Letters may be edited for space, and some may be run online only.
Happy reading, and we look forward to hearing from you!
Quest Subscription Changes?
If you have questions about your Quest subscription and are registered with MDA, contact your local MDA office by calling (800) 572-1717. Personal records are maintained at your local MDA office, so it’s important that you notify the Health Care Service Coordinator in your area with any changes.
Also visit mda.org/locate to find your local office. If you’re not registered with MDA, direct subscription questions to the national office at (520) 529-2000, ext. 6430.