Feedback from Quest readers and the MDA community
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 quest.mda.org 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.
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
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.
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, or email firstname.lastname@example.org.
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 email@example.com 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.