Living With Multiple System Atrophy
Something New Everyday
Two biggest problems in the last 3 months have been my eyes and pneumonia. Starting about 4 months ago, I also started experiencing some pulling and drooping of facial muscles, which make my face look somewhat distorted. Luckily it comes and goes, and like the eyes, is not yet permanent.
The right eyelid often droops down and at times does not want to stay open at all. The left does it somewhat also and three times now I could not hold my eyelids open at all. I looked it up and there are a couple of fancy names for this symptom, but basically there is nothing to be done about but live with it.
Fighting aspiration pneumonia is going to be an ongoing battle. I spent a week in the hospital in July for pneumonia. They did a modified barium swallowing test and the results were disappointing to say the least. Thin liquids are going into the lungs as the “doorway” that is supposed to shut is not working correctly and not sealing off the pathway to the lungs, allowing liquids and any bacteria in those liquids to get into the lungs. They also found that as I chewed food the base of my tongue was not rising up to block the throat until time to swallow. This is allowing food to prematurely fall into the throat area and causing choking. They put me on a “no thin liquids diet with finely chopped food to reduce choking.” Of course they said this would not improve, only worsen, and to begin thinking about a feeding tube.
The ophthalmologist said I had excessive square wave jerks of the eyes and also upward gaze palsy. Also seeing slight double vision at times.
A Brief History Of My Experience With MSA