Answering questions has gotten harder for my gene-positive wife
Cognitive issues have slowed her thought processing, information recall
Over the past year, Huntington’s disease has begun to affect my gene-positive wife, Jill, in various ways.
Anyone who’s met Jill would tell you that she loves knowledge. As a lifelong journalist, I share the same passion. However, I don’t want my knowledge about Huntington’s disease to increase because I’ve observed symptoms in her.
When I talk to Jill, she is effervescent and full of life. She loves to talk to people and seems to have a bottomless mental library of facts. Often, when I wonder about something, I ask Jill instead of looking it up. (She was my Google before Google existed.)
Sometimes I ask so many questions of her that she’ll act bothered, but then answer me. I know she likes knowing the answers and sharing her knowledge.
But over the past year, I’ve started noticing Jill’s behavior change when I ask her random questions.
Cognitive issues become noticeable
The changes were small at first. Sometimes when I asked her something, she’d take a few seconds to process it before answering me. Over time, the pauses got longer and longer, but the answers still came. Sometimes she’d start to give an answer, then realize she was unsure about it.
As time has gone by, she’s started looking up the answers to make sure she’s right.
The woman who was always sure of herself and her knowledge isn’t anymore. I realize that what she’s going through is typical for someone with Huntington’s, because the disease causes certain brain cells to break down. As neurons degenerate, a person’s cognitive function suffers.
Because Jill’s father also had Huntington’s, I knew what was to come when she was diagnosed. But knowing that something will happen and seeing it actually occur feel very different.
When Jill and I talked about this column, she was embarrassed. While she’s noticed a little decline, she didn’t realize how much Huntington’s is affecting her ability to understand what’s being said.
She added that her long pauses don’t always come from not knowing the answer. While Huntington’s disease can — and does — rob her of knowledge, sadly, it’s affecting her in other ways as well.
Sometimes, she said, it’s like she knows the answer, but when she tries to access the information, it gets locked in her brain. It doesn’t move from her brain to her mouth as quickly as it used to. She said it’s like having someone’s name on the tip of your tongue but not being able to say it.
Everything she shared is so much worse than I thought. The saddest part is that she knows when it’s happening, but there’s not much she can do about it.
Jill said she would rather not be able to understand what’s happening to her mental status. But, to her credit, she’s doing everything she can to slow her mental decline as much as possible.
I offered to help her learn new puns every day, as I believe that laughter is the best medicine. She smiled and patted my arm without saying anything. I told her she didn’t need to answer.
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.
Thanks to you and Jill for your posts Carlos. Very similar to what my scientist wife and I experienced as HD symptoms began appearing. She also found out she was gene positive around 40 and stopped working 10 years ago around 50. Cognitive and physical changes have progressed and there are limitations for sure but we do the best we can to enjoy our surroundings, friends, and family. Still plenty of good times to look forward to. Best wishes to your family and thanks for sharing- we are not alone with HD. PS-love the drawing for your column!
Thank you for reading our column and reaching out to share your story. I am sorry to hear you and your wife are going through the same struggles Jill and I are experiencing. I am happy to hear you are both enjoying the life you are living. It is hard to face the upcoming HD decline but facing it with those you love and with laughter does make it more bearable. I am sure Jill will be grateful for my never-ending puns for that reason. One day, I hope.