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Discrimination and Neuromuscular Disease
The Americans with Disabilities Act protects Americans with disabilities, including those caused by neuromuscular disease, from discrimination. I now believe, however, that I should have asserted my right to reasonable accommodation on my behalf by my employer.
Coloring Pages Featuring Children with Disability
A variety of free downloadable coloring booklets, pages, and activities for young children can be found on the internet. This article lists some of the websites with coloring pages and booklets available that highlight children with disabilities including mobility issues.
Writing to Find Meaning
Often, it becomes difficult to find the meaning behind the difficulties we go through. Experiencing a neuromuscular disease can leave one wondering how to make sense of it all. Many people find writing to be cathartic. The technique called clustering can help you to find meaning in your situation.
Neurology Now Magazine
Neurology Now, a magazine published by the American Academy of Neurology, and its companion website provide readers with accurate and readable articles about a variety of neurological diseases, including neuromuscular disease.
Support Groups and Neuromuscular Disease
If you do not yet belong to a support group, I strongly urge you to find a support group in your area or online. The relationships that you build will help you to live, cope, and even thrive despite neuromuscular disease.
CMT and Physical Therapy Training Resource
Because Charcot Marie Tooth is relatively rare, many physical therapists do not have much training or experience with CMT. The Charcot Marie Tooth Association (CMTA)and Physiotherapy Associates, Inc. (PTA) have partnered to provide a resource for physical therapists and their patients.
CMT and Footwear
The right shoes cannot stop the progression of CMT. They can, however, provide better stability, balance, and comfort. This can help those of us with CMT keep walking as well as possible for as long as possible.
Neuropathy and Daily Foot Care
With correct foot care and regular inspection, I can minimize problems and keep my feet as healthy as possible. If you have neuropathy, make sure to speak with your physician about the proper care of your feet.
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.
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