The symptoms of Huntington’s are stealing my wife’s words
The disease affects the brain’s information processing center
My wife, Jill, and I recently celebrated 15 years of marriage. When we said “I do” all those years ago, I couldn’t have guessed what would eventually happen to her: She is being robbed of her words. Or, as she puts it, words are “escaping” her.
Jill will be speaking and suddenly stop because the right word doesn’t pop into her head. We attribute this to the fact that she is gene-positive for Huntington’s disease, which adversely affects the brain and causes speech to falter. This is just one of the many horrible symptoms of the disease.
What’s sad about all of this is that Jill loves words. Her mom tells stories of all the words she used to make up as a child, such as “sammich” for sandwich.
One of the reasons she fell in love with me is because when we first met, I used a word she had never heard before (mercurial), and she had to look it up.
Simply put, Jill loves every word in the English language — even the bad ones, to her mother’s chagrin. So when she’s talking and unable to recall a word, it is noticeable to everyone who loves her.
For those who don’t know her, she is excellent at covering it up by turning it into a joke, such as by saying she was distracted by something “shiny.” Usually, people fill in the word or words for her and don’t notice her struggles. But I have, and the problem is getting worse.
Sometimes she resorts to using hand signals to indicate what she is trying to say. When that doesn’t work, she stops talking. To quote her, she quits “wording.” And it is devastating to see.
I love it when Jill talks. I love how alive she becomes. She’s funny (although sadly, she never uses puns), and the type of person who can command a room when telling a story. She refers to this as “holding court.” So my heart drops when I see her stop talking.
For our 15th anniversary, I would’ve loved to give her a cure for Huntington’s. But for now, I want to stop this terrible illness from taking anything else from her, even if it means that I have to give her all of my words.
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.
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Bonnie Cordova
Thank you for your words Carlos. I am also a writer but haven't written about my daughter who was diagnosed with HD seven years ago. Your coursge warms my heart. I wish I knew you both.
Carlos Briceño
Bonnie,
I am sad for you and your daughter. It is a struggle to know what to write, because seeing it makes it so much more real. One day, I hope you will be able to sit with her to write your HD journey together.
Royal Westbrook
I am presently watching two third generation family members with Huntington's. It does not get any easier to deal with emotionally. It is even more disturbing to me that community services turn a blind eye and deaf ear when these two are in their mid 20's. Some other diseases get you assistance right away, but this disease is so little understood that I have even heard doctors say that the patients are fine and we should not worry. It makes me wish ill on anyone dedicated to health that absolutely refuses to educate themselves when so much is available!
Carlos Briceño
I can't say how much hearing that breaks my heart. I have heard some horror stories about doctor's. There are however, a lot of really great ones out there. Remember, they don't have to stay with a practice that isn't meeting their needs. If they reach out to the local HDSA social workers, they might be able to help with services. I get angry too when doctors don't understand the disease. Jill reminds me that it's our job to help inform them. She isn't always listened to, but we keep doing it because no one understands anything until they learn about it.
ALISA
ALL OF YOUR ARTICLES TOUCH HOME WITH ME BUT THIS ONE IS SO TRUE. AT 55, MY HUSBAND AND I WORK AROUND MY INABILTY TO SUDDENLY BE UNABLE TO CARRY ON A CONVERSATION. I DID NOT REALIZE HOW DEPENDENT I HAD BECOME ON MY CHILDREN TO HELP ME FINISH A SENTENCE OR SHOP OR COMPLETE AN APPLICATION UNTIL MY LAST BIRD LEFT THE NEST. NOW I DEPEND ON HIM TO HELP ME SHOP OR EVEN CARRY ON A CONVERSATION AT 31 YEARS OF MARRIAGE HE IS MY ROCK. I AM SURE YOUR WIFE VALUES YOUR HELP EVEN WHEN SHE CANNOT TELL YOU. THANK YOU FOR NEWSLETTER.
Carlos Briceño
So sorry to hear you are experiencing difficulties. Jill jokes with me that she's just giving me more time to talk, but I know how hard it is to start losing the "everyday" skills.