The last few weeks have been somewhat trying for Jill. She has been plagued with giant hive welts. They cover her arms, legs, and torso. Sometimes her lips or eyes will randomly swell. She jokes, “People pay a whole lot of money to have puffy lips.” She hasn’t been able to figure out what she could possibly be allergic to.
The problem with hives is that they itch all the time, so when Jill tries to sleep she often wakes up with an insatiable urge to scratch. She had a video visit with a doctor, who prescribed her prednisone. Both things contribute to her lack of sleep.
As a distraction, Jill has been binge-watching a show called “Alone” on Netflix. Contestants are dropped off with several items in some lonesome, inhospitable place where the weather quickly turns miserable. The goal is to outstay the other contestants. The last person standing is the winner, and the prize is $500,000. Some contestants say it’s all about their journey, but do we really believe that? It is ALWAYS about the money.
You would be surprised at what people will do when they are alone and hungry. Although for $500,000, I would eat a shoe — as long as I could put ketchup on the shoe. I’m addicted to ketchup. You realize very quickly that this show is about who can live on no food and no company the longest. All of the contestants rapidly lose weight because of their inability to find food sources and get the requisite amount of nutrition.
As I am not a vampire, I have only been catching bits and pieces of the show. It seems pretty crazy to be willing to starve yourself and put yourself in real physical danger for any amount of money, so I asked Jill if she would ever do something like that. Her answer was unexpected. She said with Huntington’s she will eventually experience all of that — in the form of trouble chewing, swallowing, and eating food — but without the bonus of prize money.
I really never thought of it like that. Her father had issues eating solid food, so she would make giant pans of potatoes and yams combined with weight gainer products for him to eat. Eventually, he couldn’t eat that, so he chose to have a G-tube, or gastrostomy tube, inserted to bring nutrition directly to his stomach. It’s one of the ways doctors can make sure people who have trouble eating get the fluids and calories they need.
There are ways Jill can help pause that for as long as possible. She does vocal exercises to keep her throat muscles strong, and when swallowing becomes an issue, she can visit with a speech therapist to keep from getting worse.
I have hope for a cure, but for now, I will do everything I can to help her enjoy the food she eats because one day she may not be able to.
Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Huntington’s disease.
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