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Quest Issue 2, 2022 -
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Recent Quest Articles
Caregiving: Task Masters
“The proper equipment helps reduce fatigue because it decreases the energy required for a routine task,” says Teri Krassen, an occupational therapist at the MDA Care Center at Good Shepherd Rehabilitation Hospital in Allentown, Pa. Health care professionals at MDA Care Centers can provide guidance in selecting products, train clients and their caregivers to use them, and give advice on individual issues or answer questions. According to Krassen, the best products help an individual and their caregiver find a balance between how much they can do independently and the amount of support needed from the caregiver. Some products allow individuals to be more self-sufficient, which can boost self-confidence and promote better relationships with caregivers.
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In Loving Memory of Jerry Lewis (1926-2017)
“The highlight of my time as MDA National Ambassador was interacting with Jerry. Not a moment could pass without an opportunity to laugh myself silly. Jerry Lewis will always be synonymous with pure dedication to a cause.” — Rocco Arizzi, National Ambassador 1979–1980, pictured above with Jerry Lewis
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Picture Perfect
Karen Condron’s passion for painting dates back to her first art lessons in 1968, but she only began showing her work at festivals in 2013, the same year she was diagnosed with bulbar-onset ALS. When ALS begins in the bulbar motor neurons, the muscles used for swallowing and speaking often are affected first.
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MDA Muscle Walk: Walking the Walk
“That encouraged us to start early this year,” Nash says. “And we ended up being No. 4 in the nation.” Team Matthew raised more than $24,000 this year through many different avenues: social media, the family’s friends and relatives, and Nash’s work in the wine industry. Beyond feeling great about raising money for a cure, the experience of being at the MDA Muscle Walk of St. Louis provided the family with fond memories.
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Game On
Participating in a clinical trial often means meeting some stringent requirements. One common requirement is the six-minute walk test, which measures the distance walked in six minutes and which may be used to help determine whether a drug is having an effect. This requirement can be a challenge for some individuals with neuromuscular diseases.
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Partners in Progress
Since 2006, Casey’s General Stores have supported MDA through MDA Muscle Team and the MDA Summer Camp Pinup Campaign, which lets shoppers purchase a $1 or $5 pinup (which includes a 7UP coupon) to display in the store. Over the past 10 years, Casey’s stores have raised more than $8 million with this campaign, including $1.5 million in 2016 alone.
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Flying High with Kippy
When Christine “Kippy” Hoene, a 57-year-old acrobat and entrepreneur with facioscapulohumeral muscular dystrophy (FSHD), first opened her SaltAer circus school in Jacksonville, Fla., earlier this year, it represented a culmination of her passions. At age 35, Hoene decided she wanted to learn a new skill every year, and after seeing Cirque du Soleil perform in Las Vegas, she set out to learn acrobatics.
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Going for the Gold
This July, four athletes with neuromuscular diseases competed in the Federation Internationale De Powerchair Football Association (FIPFA) World Cup for Team USA, which came in second place overall. Jordan Dickey, Natalie Russo, Ben Carpenter and Nathan Mayer all competed in the tournament, which pits teams of four individuals operating wheelchairs with wheel guards against each other in a game commonly called power soccer. The goal is to maneuver your team’s ball into the other team’s goal through dribbling, passing and shooting.
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Pushing Their Limits
In 2014, two lifelong friends set off on a journey that, in addition to deepening their friendship and teaching them life lessons, would eventually inspire a book, speaking engagements and a documentary called “ I’ll Push You,” which is premiering November 2. Justin Skeesuck and Patrick Gray have been friends since birth. When Skeesuck was 16 years old, he began to feel the effects of a rare form of neuromuscular disease.
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In Sickness and in Health
Have you seen the ridiculous meme going around the internet that asks people if they would stay with their spouse if their spouse ended up in a wheelchair? Every time I see it, it makes my blood boil, especially when people hesitate with their answer. It is upsetting that this is even a question to be asked. Marriage is a commitment, and a disability should not change that. But not everyone sees it that way. Fortunately, my husband Russel and I both do.
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.
