Horror Films, Huntington’s, and Bad Luck

Carlos Briceño avatar

by Carlos Briceño |

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My daughter, Alexus, recently spent about a month with my wife, Jill, and me, and the more time she visits with us, the sadder we get when she leaves. The weekend that she left, Jill and I moped.

To divert our attention, we decided to go to a movie theater that also serves food to watch “Scream 5.” We could kill two birds with one stone: We’d eat lunch and forget our sadness by watching terrible things happen to other people. What Jill and I didn’t expect was the afternoon to turn into a mini-horror movie of its own.

To put what occurred into perspective, here’s some insider information about Jill and food: If food servers will get anyone’s order wrong, it will be Jill’s. If Jill asks for a specific item not to be included in her salad, take a wild guess whose salad will have that item.

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We still talk about the time she ordered a cheeseburger that arrived raw. The waitress apologized, took the cheeseburger away, and came back five minutes later. But rather than preparing Jill a new one, the cook had put the raw cheeseburger back on the grill, burnt it, and sent it back out.

Imagine a hockey puck with cheese and condiments — that’s what the cheeseburger looked like. We decided to leave.

At the movie theater the other day, everything seemed fine until the waitress picked up the remaining food that Jill hadn’t finished but wanted to take home.

The waitress was carrying an alcoholic drink from another customer and spilled it. Ice cubes flew all over the place. It spilled on Jill’s lap and leg, and on her food. Some of the ice cubes even made it into her boots. Her jeans instantly smelled of alcohol and were sticky.

The movie wasn’t over yet, but Jill’s leg was cold, and the alcohol smell was overpowering, so through tears she said, “Let’s go.”

I went to the box office and explained to the manager what had happened, adding that our daughter had just left, so my wife was extremely sad. I told the manager we had hoped to have some diversion from the sadness, and the accident didn’t help matters.

The manager was extremely apologetic and refunded our money for the meal and the movie. On the way home, Jill sobbed, “I don’t understand why I have such bad luck.”

My heart felt like it was breaking the moment she said that, because I knew what she meant. Although what had happened at the movie theater was unfortunate, Jill is smart enough to know that accidents happen. She is balanced enough as a human to take those kinds of incidents in stride.

But what she faces each day is the knowledge that there is a deranged killer out there targeting her and causing her motor and cognitive functions to worsen over time. This killer isn’t a fictional one like in a horror movie, but rather a part of Jill’s real life. She has Huntington’s disease, a rare terminal illness. Our daughter has it, too.

Sometimes this reality can be overwhelming, and the only response is to do what we did that afternoon: be sad about how unlucky her life seems at times and hope that this horror movie will have a plot twist at the end in the form of a cure.


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, and are intended to spark discussion about issues pertaining to Huntington’s disease.

Comments

Lance Stockwell avatar

Lance Stockwell

I I am 54 years old and HD positive as well. I have been looking for cures anywhere in the world since my diagnosis last April. There is a Stem Cell Institute in Panama but they don't treat this. There are European doctors that don't have to deal with the potential delays of the FDA, but no answers there either. The doctor in Iowa City that diagnosed me said "Enjoy your good days" which was frustrating to me as well. If anyone has any advice for me I would welcome. I am on one medication that is supposed to help with movements, but it is not working very well!

Reply
Carlos Briceño avatar

Carlos Briceño

Hi Lance,
I want to thank you for sharing your struggles with others. It sounds like you have done some research on Huntington’s, and I applaud your effort. Being your own advocate is so very important. I don’t know if this will help, but this link will take you to the HDSA website where you can find resources that may help https://hdsa.org/about-hdsa/locate-resources/. You can also look into the trials that are being conducted by going to https://hdsa.org/hd-research/hd-trial-finder/. It may help to talk to your doctor about the medication not working, sometimes an adjustment might be needed or there could be something else you might be able to take. Jill’s father took several medications over the years to help with his movements. I am sorry about your experience with the physician. Jill had a similar situation, and she was lucky enough to be able to go to another doctor that we both trusted and respected. I hope you can find that as well.

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Frank Black avatar

Frank Black

Best bet is mediterranean diet (also no alcohol, but heavy CBD/THC, microdosing psilocybin helps) , exercise, meditation. positive thoughts, forgiveness. The doctor in Iowa City is not exactly wrong either. Wishing you the best. From on HD patient to another. I'm 48 by the way.

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Carlos Briceño avatar

Carlos Briceño

Hello Frank,
Thank you for sharing your advice. I can’t say that I know anything about how the chemicals work, but a healthy diet, exercise and positive mental health can go a long way.

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