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Quest Issue 2, 2022 -
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Recent Quest Articles
Web Exclusive: Personal Finance Q&A with Michael Morris
In Investing in the Future, Quest explores the idea that financial planning can be complicated, and that it pays to do your research and learn about your options. To help build upon the information provided in Investing in the Future, Michael Morris, a recognized field leader on financial capability for people with disabilities, provides some answers to commonly asked questions related to the topic of personal finance.
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From My Mother: Surviving and Thriving in a Family Ravaged by Genetic Disease
Editor’s note: Author Darcy Leech is an instructional technology coach in Great Bend, Kan. She has published From My Mother, a memoir on losing her mother and brother to myotonic muscular dystrophy, from which this chapter is excerpted. She lives with her husband, Daniel, and their 4-year-old son, Eli, and 5-month-old daughter, Hannah. She enjoys technology, volunteering with service groups and writing for healing. Leech participated in her first MDA Muscle Walk in April for the Wichita MDA office and had an amazing experience.
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More than a Number
I am a statistic. In 2012, at 57 years of age, after almost two years of worsening symptoms, I was diagnosed with ALS. Being a white male at my age, in many ways I was the “typical” ALS patient. Of course with a disease like ALS, there really is no such thing as a typical case. Each of us is unique, each of us is different. This disease attacks men and women, young and old, of every race and religion. This disease attacks rich and poor alike. And yet it is a rare disease, so rare as to be deemed “orphaned,” at least until the Ice Bucket Challenge.
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Keeping Families at the Center of Our Mission
One of the most enjoyable privileges of my role is visiting with MDA families we proudly represent and are committed to serving. You are at the heart of everything we do at MDA. You’ve heard us say that, but what does it mean to families like yours? Earlier this year, MDA launched a revitalized brand to better reflect the voices and needs of families and a bold plan to enhance the research, care and support we provide to you. This includes the experience and care you receive at MDA Care Centers (formerly called MDA Clinics) in hometowns across America.
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The Heart of Our Mission
Joseph (Joe) Akmakjian, who was diagnosed with type 2 spinal muscular atrophy (SMA) when he was 15 months old, will turn 25 this year. In 2015, to celebrate his 24th birthday and doubling his life expectancy, he didn’t have the standard cake and ice cream with friends and family. Instead, he and 11 friends went skydiving to mark the occasion. Akmakjian was securely strapped to his skydiving instructor, wore a neck brace, and his arms were restrained across his chest. As he got ready to feel the wind on his face at 120 miles per hour, he shouted, “YOLO!” short for “You only live once.”
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Progress Now Winter 2016
At MDA, we take a big picture perspective across the full spectrum of neuromuscular diseases to uncover scientific and medical breakthroughs that accelerate treatments and cures. The power in our research approach is that we can often apply learnings from one disease to progress in others to bring urgently needed answers to our families. Take a look at what's happening in research and clinical trials for Winter 2016.
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Leading by Example
American author, speaker and salesman Hilary Hinton “Zig” Ziglar once quipped, “You can have everything in life you want if you will just help enough other people get what they want.” For Mike Rowlett, these words are more than a nice sentiment; they are a personal philosophy that he lives by every day. And he credits that ethos with helping him achieve what he calls “a blessed life” with his wife, Beverly, and their blended family.
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An Attitude of Gratitude
Life is certainly full of surprises, isn’t it? Just when you think you’ve figured things out, you round a curve and — surprise — you hit a detour!Being diagnosed with ALS (amyotrophic lateral sclerosis), also known as Lou Gehrig’s disease, in 2012 at age 55 was a most unwelcome detour, to put it mildly. We were not completely taken by surprise since it had been clear something was wrong with me for quite some time. When tests and clinical observations eventually ruled out everything else, we were faced with the awful truth: I had a disease that would take away my mobility, my independence and, eventually, my life. Scientists are working hard to find answers. But as I write this, there is no effective treatment or cure for ALS.
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A Passion for Helping Others
The reward of giving back isn’t something 23-year-old Brandi Hawkins focuses on as she embarks on a career in social work. She just wants to help people. “There are so many people out there who are in need of special resources that aren’t aware of how much the system can assist them,” she explains. “Social workers tend to be a voice for those in need.”
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At Your Service
Eric Cook, who has limb-girdle muscular dystrophy (LGMD) and uses a power wheelchair, no longer struggles to pick up the TV remote or his glasses when he drops them on the floor. Instead, the 57-year-old retired engineer relies on his service dog, Dusty, to help him with these and other needs. In total, Dusty knows and responds to 40 different commands for everyday tasks like turning on a light switch, pushing an elevator button or opening the refrigerator door. When Cook begins to slump in his wheelchair, he even has a command for Dusty to gently nudge him back into an upright position.
Read MoreMDA Resource Center: We’re Here For You
Our trained specialists are here to provide one-on-one support for every part of your journey. Send a message below or call us at 1-833-ASK-MDA1 (1-833-275-6321). If you live outside the U.S., we may be able to connect you to muscular dystrophy groups in your area, but MDA programs are only available in the U.S.
