It’s been described as having ALS (Lou Gehrig’s disease), Parkinson’s, and Alzheimer’s simultaneously. There is no cure and the disease is fatal.
According to the Huntington’s Disease Society of America, there are currently 30,000 symptomatic Americans. That’s less than 0.01 percent of the population. But if you or a loved-one has Huntington’s, that’s a meaningless statistic.
My family has no first-hand experience with Huntington’s. The wife of a former associate pastor at our church was my introduction to the illness. When they came to our church, she was in the middle-to-late stages of the disease. She was still able to walk and engage in conversation, though it was sometimes difficult to understand what she was saying. Her symptoms at the time included chorea – involuntary and unpredictable body movements that affected her upper body, arms, and face. Over the course of a few short years, her symptoms worsened. Soon she was unable to walk and required a wheelchair. Then a nursing home. After a year or so there, she passed away peacefully.
She was fortunate in that she had a husband who loved her unconditionally and was by her side until the end. I don’t really know what his life was like as the primary caregiver, but I have no doubt that it was unimaginably challenging on so many levels. He leaned on his faith, as did she, with the knowledge that though in this life she was broken, in the next she would be made whole.
In my novel Heather Girl, Heather Roth has Huntington’s Disease. I didn’t start out to write a novel about someone with Huntington’s. My intent was to tell the story of a young woman with challenges, one of which was how she was dealing with a serious health issue. As the story unfolded, I learned that Heather’s mother had Huntington’s. It’s hereditary. If one of your parent’s had Huntington’s, there’s a 50-50 chance that you will have it. As my story begins, Heather is becoming symptomatic. And she knows where it leads. There are other complications in her life and because her family is fractured, she doesn’t have the best support system. She doesn’t always act reasonably and her decisions are not always the best. But this story is fiction.
In real life, the effects of Huntington’s, like the disease itself, are varied. Some, like the wife of our pastor, have love and support all the way. For others, it’s a long, lonely journey. If you know a family living with Huntington’s, you can be a friend. Little things can help. A Frosty from Wendy’s is always a treat and good for those with difficulty swallowing. A bowl of soup for caregivers on a cold, winter’s day will mean more than you realize. And a sympathetic ear is always appreciated.
Even if you have perfect health – and nobody I know has perfect health – life can be hard. Be a friend, lend a hand, and help someone find hope in the compassion that we can all offer.
