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Research Registries and Neuromuscular Disease
Enrolling in a registry specific to neuromuscular disease will help individuals to be informed about clinical research regarding a specific disease or condition. In turn, disease registries will also aid researchers looking for qualified individuals to participate in research protocols.
Stress, Humor, and Neuromuscular Disease
While neuromuscular disease is not funny, many of the situations that people find themselves in are funny. Seeing the humor in our struggles provides relief from stress and improve physical and emotional health.
Gratitude and Neuromuscular Disease
Gratitude, an attitude of thankfulness, does more than benefit the receiver. In individuals with neuromuscular disease, keeping a gratitude journal was found to improve energy, positive mood, feelings of connectedness, positive rating of one’s own life, and even sleep duration and quality.
Charcot-Marie-Tooth Association Circle of Friends
I have a confession to make – I have no practical experience in fundraising. I have never put together a fundraiser on my own and find the task daunting. Recently I ventured into the fundraising arena in one of the simplest ways possible, through starting a Circle of Friends with the CMTA.
Social Support and Neuromuscular Disease
This time I have determined to handle my health difficulties differently than I before. Because I opened up to others, I found the strength that I need to handle my diagnosis of Charcot Marie Tooth in an emotionally health way. In turn, I have been able to help others.
Why are MS and CP Not Neuromuscular Diseases?
Diseases that cause symptoms by directly affecting the central nervous system, rather than the peripheral nervous system, are not classified as neuromuscular disease. The symptoms of neurological diseases often overlap with other diseases, including neuromuscular disease, making diagnosis difficult.
What is an IEP?
Students that qualify for special education must have a formal Individualized Education Program (IEP). The IEP specifies the support that a child with physical and/or cognitive disability needs to succeed in the least restrictive environment.
What is a 504 Plan?
Schools in the U.S. that receive federal funding must adhere to the provision in Section 504 of the federal Rehabilitation Act of 1973. Section 504 guarantees individuals with disabilities equal access to education as a civil right. Plans based on Section 504 are referred to as 504 Plans.
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.
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.
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