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g Neuromuscular Diseases Site

BellaOnline's Neuromuscular Diseases Editor

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 F E A T U R E   A R C H I V E  

Archive by Article Title | Archive by Date

“It’s Not Fair!” – Coping Spiritually
No, life is not fair: however, the more I focus on what I perceive others have that I do not have , the more unhappy and envious I become. I could easily allow myself to lose my joy. My antidote comes from focusing on prayer and gratitude to God, most often through my journaling.

39 Pounds of Love Documentary Review
The Documentary 39 Pounds of Love provides viewers a rare glimpse at a life well lived despite severe disability. This documentary follows the cross-country travels of Ami Ankilewitz, a 34 year old man with a rare form of the neuromuscular disease SMA/2 (spinal muscular atrophy).

Abilities Expo 2014
At the AbilitiesExpo, I had the opportunity to learn about the many products, services, and non-profit organizations that serve those with physical challenges, including those with neuromuscular disease. Admission to the Abilities Expo is free.

Accessibility at Disney’s Magic Kingdom
Overall, Walt Disney World’s Magic Kingdom was accessible, and Guest Services was helpful. The Guest Assistance Pass helped me to reduce waiting in lines. The park did require a great deal of walking and standing, however, and my comfort would have been greatly increased had I used a wheelchair.

Accessible Voting in the U.S. 2013
Polling places were not always easily accessible to those with mobility issues or other disabilities. Today, however, federal laws require that polling places be accessible. Make sure that you have registered to vote and vote in the next election.

Acid Maltease Deficiency (AMD)
Acid Maltease Disease (AMD), which is also called Pompe Disease, leads to progressive weakness of the mucles in the hips, upper legs, upper arms, and respiratory system. The infantile onset form also affects the muscles of the heart.

Airport Security and Disability
Going through airport security checkpoints can be daunting, especially when mobility issues make assistive devices necessary. Learn about how the Transportation Security Administration (TSA) has anticipated these needs and has made provisions for screening individuals with mobility issues.

Amotrophic Lateral Sclerosis
Amotrophic Lateral Sclerosis (ALS) is one of the motor neuron diseases. It affects the muscles of the legs and arms, throat, and mouth, and eventually involves all of the voluntary muscles, affecting eating and respiration, causing paralysis leading to death. May is ALS Awareness Month.

Andreas and His CMT Challenge
Although Andreas Johansson suffers from the progressive neuromuscular disease Charcot Marie Tooth (CMT), he has not let that stop him from pursuing his dreams. Coming to the United States from Sweden, he embarked upon a trek across the U.S. on an EliptiGO, a self-powered eliptical style scooter.

At an MDA Lock-Up
I spent part of my day recently “locked-up.” No, not in a real jail, but with all of the “jailbirds” participating in a local Muscular Dystrophy Association (MDA) Lock-Up. While raising money, participants also raise awareness of neuromuscular disease and MDA programs.

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