Well, what do you do when you have a disorder like childhood or teen-onset myotonic dystrophy where your children look normal except for some male pattern baldness and muscle wasting? As far as everything that you read, it is a muscle disease.
I can tell you from my experience that the mental/cognitive effects are as devastating as the physical effects (and the physical effects are extensive from swallowing, pneumonia, weak hand movement, unstable walking, to the heart quitting). The point that I am trying to make is that many people compliment me and tell me what a wonderful mother I am. The reason that I share my experiences isn’t to brag about myself, I am trying to make a point that those with myotonic dystrophy are affected in both body muscles and their mind. So, I am only doing what needs to be done.
Because myotonic individuals look almost normal, most of us don’t realize the effects on their mind, including us parents. I may sound like a broken record about what I do but hopefully as I become a more skilled writer, I will be able to make the point that I do what I do because my family would not only cease to thrive, they would probably not be alive if I didn’t adapt my life in whatever ways are necessary to be there for my family.