Mailbag Fall 2014

Feedback from Quest readers and the MDA community

by Quest Staff on October 30, 2014 - 9:03am

Quest Fall 2014

Letters to the Editor:

Adventures in parenthood

Editor’s note: In response to the summer issue of Quest’s cover story, A Dream Within Reach, about the challenges and rewards of becoming a parent when you have a neuromuscular disease, we received letters and comments online at that were overwhelmingly supportive. Here are two responses: 

This is a wonderfully affirming article. I was diagnosed with LGMD [limb-girdle muscular dystrophy] when our daughter was a year old. After gynecological counseling, we decided to have another child. Four years after our daughter was born, I gave birth to our son. When my son was 4 and my daughter 8, I became a single mom. Being a mom has been challenging, wonderful, exhausting and the best decision I ever made.

My two children are adults now; we remain close and get together often. They are compassionate, loving and generous people. I would like to encourage others who have been diagnosed with a neuromuscular disease and desire to become parents to follow your hearts, get your support team involved and begin this amazing adventure.

— Marilyn Green, Port Orford, Ore. 

I was so happy to read these stories. My experience was very different. I am 70 now, and we have learned a lot over the years. I have LGMD and began using a wheelchair full time in college. I wanted to have kids when I was in my 20s, but my doctor shamed me out of that desire: You could die in five years. How would you get the baby around — in a wagon? You’d be bedridden and probably never walk again. I instead had a tubal ligation procedure. At age 35, young disabled women around me were having kids and parenting them in creative ways. I decided to adopt, not an easy route in the U.S. I was very lucky to be able to move to Mexico and find personal care assistants who took care of me and helped me with my son, whom I adopted there.

He is thriving at 32, has great disability consciousness and, as far as I know, has never had a moment’s embarrassment about having a mom in a wheelchair. Congratulations to all these parents and kids for pushing for one of the most basic rights. I’m happy to see MDA supporting these folks. 

— Kitty Cone, Berkeley, Calif.

Facebook feedback

I have been associated with MDA because of my grandson, Reilly. We have been at so many events down through the years. I especially enjoyed the times spent at our local telethons, but a highlight was when we went to Vegas with him for the national telethon. I am grateful to all of the organizations that support Reilly and others who are living with a neuromuscular disease. Thank you, MDA, for all of your help!

— Lynette Johns Wissinger

I am fortunate enough to be able to volunteer my time with the various chapters in Northern California and Central California. All of you are simply amazing. Whether it is a Fill the Boot, a Lock-Up, camp or clinic, the energy and the drive just do not quit. MDA is composed of highly motivated and driven employees. It is a pleasure to watch them work their magic for their clients.

— Tony Bandermann, Your Wheelchair Mobility consultant

Quest love

I sincerely appreciate all that MDA does for individuals affected with muscle disease. I have been receiving Quest since 1992 when I registered with MDA, and I read each issue from cover to cover. 

— Patricia Gordon, Evergreen, Colo.

What an awesome, informative online magazine!

— Melinda B., Brisbane, Australia

Quest has a lot of helpful information that I can use. Thank you.

— Terri A. Limbach, Joliet, Ill. 

The best of the best! Thank you for a publication like no other.

— Arthur l. Chaput, Pawtucket, R.I.

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 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, or email

We want to hear from you — share your ideas, experiences and comments with other Quest readers. To share your comments and feedback, write to: Mailbag, 3300 E. Sunrise Drive, Tucson, AZ 85718-3299. Or email letters to 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.

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