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MDA Transitions Center
The Muscular Dystrophy Association Transitions Center focuses on the needs of teens and young adults with neuromuscular disease. Launched in 2011, this site offers support, information, and resources targeting this group while also raising awareness of the challenges this group will experience.
What is Ataxia?
The term ataxia refers to an inability to coordinate voluntary muscular movements involving the head, trunk, and/or limbs, affecting movement and balance and sometimes speech and/or eye movement. The primary symptom of the neuromuscular disease Friedreich’s ataxia is ataxia.
Roussy-Levy Syndrome affects the peripheral nervous system. Distinctive characteristics of this variant of CMT include tremors (rhythmic shaking) in the hands and arms and unsteadiness of gait (gait ataxia).
What is Behavioral Sleep Medicine?
Behavioral Sleep Medicine, used in conjunction with appropriate medical interventions, can help individuals with co-occurring neuromuscular disease and sleep disorder to get a better night’s sleep and to function better during the day.
Managing Caregiving Stress
Caregiving stress arises from the emotional and physical challenges of providing caregiving. While caregiving for family member can be rewarding, caregivers often experience stress. Managing stress will benefit the well-being of both the caregiver and the care receiver.
Giving an Honest Answer to “How are You?”
I desire close, genuine relationships. Authentic sharing of my truth, even when I experience pain, must be part of that. I cannot foster close relationships while hiding behind empty words such as “fine” when someone asks how I am.
Range of Motion Therapy and Neuromuscular Disease
Range of motion therapy refers to a form of physical therapy designed to stretch the muscles, keep the joints flexible, decrease pain, and lessen the development of contractures for many individuals with neuromuscular disease, even those who cannot engage in more strenuous activities.
What are Ankle Foot Orthosis (AFOs)?
Often called an AFO, the term Ankle Foot Orthosis refers to a brace worn on the leg over the calf and foot. The brace supports the foot and ankle, holding the correct position and preventing foot drop. This type of brace is also sometimes called a foot drop brace.
Experiencing Foot Drop
Yesterday, I tripped over my own toes. This actually happens fairly often to me. One of the effects of Charcot Marie Tooth (CMT), the neuromuscular disease that I have been diagnosed with, is called foot drop.
The Upside of Down Times Book Review
Last week, I found something to be grateful for when a copy of The Upside of Down Times by Lisa Ryan arrived unexpectedly in the mail. Eagerly, I devoured this book in less than a day, and renewed my commitment to keeping a gratitude journal, and to showing my gratitude to others.
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