When a medical diagnosis is neither positive nor negative, just spun
“May the odds be ever in your favor…”
My mom has been struggling with dementia for over a decade. She was recently diagnosed with Alzheimer’s disease and with Primary Progressive Aphasia, a disorder that impacts the brain's communication center. She has been losing words for years, and will eventually lose her ability to communicate.
Her grandmother had Parkinson’s disease. This is another cognitive disorder you may have heard about; its most visible ambassador is Michael J. Fox. Its most recognizable symptom is a tremor, sometimes throughout the entire body. But its classification is under the Alzheimer’s-related umbrella of cognitive disorders.
Clearly, there’s a genetic component. Once we had Mom moved into our home, had her speech therapist in place, had her medication to treat all the lovely side effects of cognitive dysfunction (paranoia, suspicion, depression, anxiety, aggression… the list goes on, and is in no way uniform to every patient who suffers from this insidious disease) — once we had all that, I asked her medical team about genetic testing.
Their response was surprising: My best option on the market was 23andMe, or any of the various DNA testing products on the market for curious amateur genealogists and family historians. It was hard to swallow that the best product for determining your likelihood of contracting an incapacitating and all-consuming disease from which there is no respite or recovery was a commercial product for the casual consumer.
This was the first surprise. The second surprise was their follow-up tip: That I was welcome and even encouraged to take one of those commercial DNA tests on the market, but that since these tests were somewhat pricey and not at all covered by insurance, I could also rest assured in the fact that genetic inheritance of Alzheimer’s and the many dementia-related diseases was “only about 12 or 13 percent likelihood. So, you know, really low.”
It did sound low. I mean, when I pull out my weather app to check for rain, if there’s only a 20%, 30%, or 40% chance of precipitation then I usually leave my umbrella at home.