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Disease Registries for Neuromuscular Disease
Disease registries have been formed to aid researchers searching for qualified individuals to participate as subjects in research protocols. Such research is needed to advance knowledge regarding the diagnosis and treatment of neuromuscular disease.
Medical Equipment Assistance Programs
Many individuals with neuromuscular disease require medical equipment. The cost of equipment can be prohibitive, however, and medical insurance does not always provide good coverage. Fortunately, there are programs available to assist individuals in obtaining the needed equipment.
Hammer Toes and Neuromuscular Disease
Technically referred to as hammer toe deformity, hammer toe is caused by contractures in the joints of the toe. Hammertoe is most common in the second toe, but can affect all of the four smaller toes. The affected toe or toes turn under into a claw-like position.
Neuromuscular Disease, Darkness, and Balance
As we waited for the fireworks to begin, my mind wandered to the walk back to our car. I wondered if I would trip or fall. It would be completely dark by then, and most of the walk would be over uneven ground.
Resilience - Bending Not Breaking
I wish to be resilient, like these pine trees. I have faced trials and difficulties in the past, and will continue to further problems in the future. These include (but certainly not limited to) diagnosis with the neuromuscular disease Charcot Marie Tooth. The nature of CMT requires resilience.
Kayaking with Neuromuscular Disease
According to the American Canoe Association (ACA) and United States Canoe Association (USCA), kayaking and other paddle sports can be adapted to accommodate individuals with a wide range of physical disabilities.
Newborn Screening and Neuromuscular Disease
As diagnosis and treatment protocols become more advanced, newborn screening will likely become increasingly possible for neuromuscular disease. As these advances are made, ethical and practical decisions regarding newborn screening for neuromuscular disease will need to be made.
Contacting the White House
Did you know that if you can contact the White House directly? If you are a U.S. citizen, making your voice heard to influence governmental decisions is your right and responsibility. Contacting the President of the United States at the White House is one of the ways that you can do this.
Challenged Athletes Foundation
The Challenged Athletes Foundation supports the athletic efforts of individuals with physical challenges. Rather than focusing on disability, this organization focuses on the abilities of athletes with physical challenges in order to create acceptance and respect.
My First Visit to a Neurologist
In retrospect, I learned a lot from my first visit to a neurologist about how to be better prepared for future visits to the neurologist and to other physicians that I would be referred to see.
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