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Myotonic Dystrophy - Carers UK Forum

Myotonic Dystrophy

For issues related to specific conditions and disabilities.
I have myotonic Dystrophy and up until two and a half years ago was a carer for my son who was congenital (the condition shows at birth) Sadly he died very suddenly(aged7 and 1/2 years old) It is a genetic condition and is passed from one parent , but not all the children get it. Out of 4 cildren anly my son had it. It cannot lay dormant. I f you inherit the defective gene the condition is there in varying degreess. As the generations fo on the progression becomes worse and the condition usually shows earlier. If a child shows at tweny six an affected brother or sister could be congenetal or start to show in childhood. It is a muscle wasting condition and also includes stiffness of the muscles. Usually the arms are more affected than the legs. Pain can be present but not in everybody. Sadly I have the pain which is pretty constant but then are an awful lot of people worse off than me. Because the heart and lungs are muscles and controlled by muscles it is advosable to have a ECG and cardiograph yearly and also to attend a respitory clinic regulaly to check lung function. There is no cure and the condition only gets worse. Lucily I am not tin a wheelchair but I have a mobility scooter which I use when I go local shopping as I live at the top of a hill. I am one of the lucky ones as my health authority are reaally on the balll and the care that I get is second to none. Many people I have met with the condition are alot worse of than myself so we just smile through the pain and get on with life. (My partner and father both agree tha the only muscle in me that is not affected is my jaw and tongue!!) Alison Image Image
(My partner and father both agree tha the only muscle in me that is not affected is my jaw and tongue!!) Alison Image Image
now this made me chiuckle although i am really saddened to read about your son. i send u a massive cyber hug as the best i can do for ya.