I learned about my mother’s Huntington’s diagnosis and my own risk during my senior year of college. I was devastated by the news, which exacerbated my anxiety. At the time, I had a therapist who told me to write down all of my fears and anxieties…
Columns
More than half of the people with rare diseases and their caregivers, asked in a survey, were undecided or less than willing to be vaccinated for COVID-19 if a vaccine was approved under emergency use authorization instead of the routine process, the EveryLife Foundation for Rare Disease reports. These findings…
One of the characteristics of a good journalist is being able to digest a lot of information, such as the entirety of a study, and then concisely present the most pertinent and interesting facts in a 700-word story. I have written many of these articles in my career, and I…
Over Easter weekend, my mother-in-law, Edwina, visited. My wife, Jill, and I are always happy to see her, and as usual, the conversation turned to the latest news in the family. One notable occurrence was a situation involving her brother’s mother-in-law, Lucille, whose health at 97 years old is fragile.
Having a parent with Huntington’s disease influences my life in many ways, most of which I’m likely unaware of. It influences everything from my plans for the future to how I view the world. My mom raised me to be independent (like that…
“Do you believe in miracles?” Sports announcer Al Michaels uttered that sentence on national television in February 1980 during an Olympic hockey game between the United States and the Soviet Union. During the game, which was later dubbed the “Miracle on Ice,” the Americans were heavy underdogs. But that…
My wife, Jill, and I do not dwell on her Huntington’s disease (HD). We know it’s there, of course, lurking like gray, angry clouds and chilly air that say winter is coming. But from time to time, we do talk about it. The other night, Jill used a…
One of the most inspirational definitions of kindness I’ve ever read comes from Father Lawrence G. Lovasik’s book “The Hidden Power of Kindness“: “Not only is kindness due to everyone, but a special kindness is due to everyone. Kindness is not kindness unless it is special. Its charm…
I like to keep things organized. Everything should have a place, even if it’s on the floor next to my bed, like my clothes. Even my problems have a place: Each one has a box. No, I don’t have a box sitting around in my…
I like learning, especially from smart people. My wife, Jill, is one of the smartest I know. With that in mind, I wanted her wisdom from the years she spent caring for her father, who had Huntington’s disease (HD) and died in 2011. Following are some of the lessons…
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