This will go in depth a little more why parents of children with Myotonic Dystrophy are little more concerned more concerned with a simple cold, and to why a percussion vest is helpful. Very similiar to patting somebody on the back when they are coughing. Spencers colds are just normal colds, or they start that way. Myotonic Dystrophy is a total systamatic failure, meaning the striated muscles weaken, the smooth muscles weaken, and the central nervous system, cognitive ability, is affected. Unlike a healthy person, Spencer does not have as much strength in the intercostal muscles to assist him in coughing, so that phlegm and mucus just sits there. The mucus could eventually become infected leading to pneaumonia and eventually death, if he cannot combat a common cold, the chances of beating a serious bronchial infection are greatly reduced, although he has done it, twice so far!! Striated muscles are generally the ones you can control, like arms and legs, and for my, my man boobs ;) Smooth muscles are usually the ones that are involuntary, heart, lungs, intestines. The central nervous system controls how messages are received by many of your internal functions, many people with MMD (Myotonic Dystrophy) suffer cardiac problems (Kathy, Spencers Mommy, included) and it is one of the more common ways they pass away, respiratory issues being the second most common. With Spencer, he is considered to be on the upward swing, a large percentage of children with Congenital Myotonic Dystrophy end up passing away before they are 18 months old, Spencer, and Austin beat the odds. They will continue to get stronger in all aspects until their early teens, then the disease will begin to regress again, and eventually we will end up where we started. However, there are exciting advances being made, this disease is literally on the cusp of being cured, clinical trials on humans for a new drug just started in 2014 that could fix the striated muscle portion of the disease with hope that it could be copied for other aspects of the disease as well. Although this would help Spencer, his brain damage, Cerebral Palsy, at this current time, cannot be cured, but dont tell Spencer that, he is a belligerent little turd and will prove the world wrong for no other reason than because you told him he couldnt, love this kid!!
Posted on: Fri, 09 Jan 2015 02:41:32 +0000
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