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The Rare Clinical Diseases Research Network
According to the Rare Clinical Diseases Research Network (RDCRN) website, the purpose of the RDCRN is to increase collaboration between the research and treatment efforts of the scientists and clinicians working with many different types of rare disease.
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.
Healing Yoga for Aches and Pains DVD Review
Yoga, a low-impact exercise, has been recommended for individuals with neuromuscular disease. While not specific to neuromuscular disease, the gentle yoga demonstrated in the DVD Healing Yoga for Aches and Pains would be appropriate and beneficial for many individuals with neuromuscular disease.
What are peripheral nerves?
Having a basic understanding of the nerve cells of the peripheral nervous system can improve understanding of neuromuscular disease. While the various neuromuscular diseases differ in their cause and symptoms, each in some way affects the muscles and the nerves of the peripheral nervous system.
CMT, Grief, and Healing
Under the right circumstances, when I am not fatigued, when I wear orthortic bracing and when the ground level and firm, I walk well. Perhaps a casual observer would not know that I have any difficulties. It turns out, however, that I no longer walk well on the beach.
Duchenne Muscular Dystrophy
Duchenne muscular dystrophy (DMD) is one of the nine types of muscular dystrophies. The muscular dystrophies are a group of degenerative genetic diseases affecting the voluntary, and sometimes involuntary, muscles. DMD is caused by a problem in the gene that produces a protein called dystrophin.
Discover T’ai Chi for Back Care DVD Review
Overall, I would highly recommend this video, Scott Cole: Discover T’ai Chi for Back Care for learning a T’ai Chi practice that focuses on stretching and strengthening the back, improving balance, and gentle overall body exercise.
Obtaining a Handicapped Parking Permit
This year when I asked about receiving a handicapped parking permit, I received paperwork for a permanent placard. Find out more about who qualifies for a handicapped parking permit and how to obtain one if you do.
Recently, much of my journaling has taken the form of spiritual journaling. I have found this to be a valuable practice to help me cope with the neuromuscular disease, remember my many blessings, and strengthen my walk with G-d. Journaling has also been found to have important health benefits.
Sleeping Disorders in Neuromuscular Disease
If you have a neuromuscular disease, getting a good night of sleep may be difficult. Some research has suggested that as many as 40% of those with neuromuscular disease suffer from a sleeping disorder. Learn about sleeping disorders in those with neuromuscular disease.
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