No wonder MSA has so many enemies who'd like to wipe it out
It didn't seem like much of a disease when it started. I was in my 50s when dizziness arrived, not occasional dizzy spells but an almost constant sense of being on the deck of a boat. I began to stumble once in a while, and later on I had trouble staying on a sidewalk. It was always a surprise to step off the edge of a sidewalk, but it was part of an increasing problem with straight lines on highways or the aisles of churches and movies. Eventually I had to stop driving a car and concentrate on walking straight aisles or sidewalks without stumbling and swerving. By then I knew that something was wrong, and I brought it up with doctors. I was told it was just a sign of getting older. Eventually I consulted a highly regarded neurologist who taught at a medical school. He arranged a series of tests before diagnosing OPCA, olivopontocerebellar atrophy, which is now called MSA, multiple system atrophy. Although research is promising, there is now no known cure for MSA. It is a progressive disease, taking away one thing after another. I lost the ability to walk without a rollator. I like to read and write, but MSA sometimes distorts my vision. Like most people, I enjoy music, but mine is usually accompanied by headaches. Eating is not exactly a hobby, but it is a pleasure, but MSA leads to choking and gagging and I now handle my dinner as though I were a mad scientist looking for invisible seasonings. Taling in person still goes fairly well, but I often get tongue-tied when I'm on the phone. It is a curious description, but the word that best describes my general feeling is frail. MSA folks often feel as though they may fall over without warning. Sometimes a mug of coffee is too heavy to lift with one hand. Fingers make their own choices when an MSA person is using a word processor keyboard or punching keys on a telephone. I am fortunate to have the loving attention of family, friends and health professionals, so I can look forward to my 91st birthday next month with hope and appreciation. The invention of computers, Amazon Fire and email came at a perfect time for me. An elderly patient is blessed by computers and by MSA volunteers who offer friendly help to caregivers and caregiven.
Aloha!
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