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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.
Balance and Neuromuscular Disease
While everyone knows about the “five senses” – sight, hearing, smell, taste, touch – little attention is paid to another of important sense, the sense of balance, unless problems develop. Many of the neuromuscular diseases affect balance.
Balance Walking and Neuromuscular Disease
Balance walking (also called Nordic walking, walking with poles, or walking with trekking poles) offers many health benefits. Recently, Krin Patrie, Director of Balance Walking, spoke with me about the benefits of walking with poles, including the benefits for people with neuromuscular disease.
Balance, Darkness, and CMT
The sudden darkness in the movie theater caught me off guard, and, off balance, I could not walk. I found that I had to wait until my eyes adjusted to the dim light enough to aid my balance to begin walking again. Soon, however, I was headed up the steps and to my seat to enjoy the movie.
Bernadette Documentary Review
What would it be like to live with a progressive degenerative disease? The documentary Bernadette explores the answer to this question as it depicts the life of Bernadette Scarduzio, a young adult with the little known hereditary neuropathy Charcot Marie Tooth (CMT).
Book Review of Peripheral Neuropathy
What do numbness, shooting, difficulty with balance loss of muscle strength, and loss of bladder control all have in common? Each of these can be symptoms of peripheral neuropathy, as explained in the book Peripheral Neuropathy: When the Numbness, Weakness, and Pain Won’t Stop by Norman Latov.
Canine Companions for Independence
Canine Companions for Independence, a non-profit 503(c)(3) organization , trains and places assistance dogs. Their assistance dogs are trained to provide four different categories of help, including, service, facility, companion, and hearing.
CaringBridge Health Network Resource
CaringBridge offers a privacy protected social network community for individuals experiencing health issues such as neuromuscular disease. This nonprofit organization also offers the SupportPlanner calendar to help the family and friends coordinate care for that individual.
Centers of Excellence and Neuromuscular Disease
Centers for Excellence provide cost efficient expert health care, leading to optimal outcomes. For individuals with neuromuscular disease, visiting a Center for Excellence can provide the opportunity for high quality, comprehensive medical care.
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