Columns

My Daughter’s Grit Will Serve Her Well

As most of you know, my wife and daughter tested positive for Huntington’s disease. They have witnessed the brutality that Huntington’s can inflict, and they have every right to curl up in bed every day and cry. But they don’t. They get up and continue forward with what I…

I Have a Unique Background as a Caregiver

I’m not a nurse or a social worker. In other words, I haven’t received formal training in caregiving from a college or a university. But I do feel that I’m prepared to do well as a caregiver because of the training I received as a child. I grew up in…

What Family Means to Me

Growing up, my grandparents and I drove every summer from Florida to Pennsylvania to visit our extended family. I spent time with their siblings, nieces, and nephews who still lived in the state. I adored my family, and in turn, they adored me. At the time, family was…

Facing the Pain of Dying Younger

I saw a pig fly the other day. OK, that’s a lie. But it sure felt like one did because my wife, Jill, cried. It’s rare for her to cry. Crying makes her feel worse than whatever made her cry in the first place, so she tries to avoid it.

I’ve Lost Many Things Because of Huntington’s

During the holidays, the small, wood-paneled dining room was full to bursting with my family members. Ten or more people squeezed around a table meant for six, with just an inch of elbowroom between us. My dad sat at the head of the table, which was covered by a cream…

Caregiving Is a Marathon

My mother-in-law, Edwina, visited us right before Christmas. I’m proud to say that I’m her favorite son-in-law. (That’s a family joke. I’m her only son-in-law.) Her husband, Ken, died from Huntington’s disease in 2011. During her visit, I asked her what it’s like to be a caregiver for someone you…