Worrying About My Wife as She Begins to Experience HD Symptoms
The heartbreak of watching Huntington's symptoms manifest and progress
Recently, my wife, Jill, who is gene-positive for Huntington’s disease (HD), took a trip to Boston to participate in an observational HD study. She had been looking forward to it in part because she’d be able to visit her brother and his family and stay at our daughter‘s house for a week.
When Jill was booking her flight, she found a first-class ticket that was cheaper than any other flight that week. She bought the ticket and was so excited that she reminded me weekly of her great purchase.
I think it’s adorable how excited she gets. I love her enthusiasm for everything positive in our life and her appreciation of the little things. Last week, for instance, when she bit into a peach that tasted delicious, she did a happy dance.
The night before her trip, Jill’s phone beeped. It was a text from the airline. As soon as she read it, she made a call. While she was on hold, she shared with me what was wrong. The text had read, “Due to plane issues, your seat has been changed.” I understood her frustration with being moved out of first class, but Jill hates talking on the phone, so I knew it was deeper than that.
“What are you upset about?” I asked.
She explained that traveling stresses her, and by the time she gets on the plane, she can’t always control her movements. She’s concerned about possibly dropping something on the person next to her or accidentally hitting them. When she looks for tickets now, she tries to find seats where she isn’t next to another passenger, which was the case with her first-class ticket.
I was crushed to hear her say that out loud. At that moment, I realized how much she thinks and worries about the motor symptoms of Huntington’s, which include the involuntary jerking movements known as chorea.
I often hear HD referred to as a slow, progressive disease. For me, there’s nothing slow about Jill’s decline. For me, her symptoms — including chorea, slower cognitive processing, and depression and anxiety — are appearing too quickly.
Although everything worked out with her ticket and she was able to stay in first class, the fact remains that her symptoms have started manifesting, and there will be more to come. This knowledge makes my heart buckle every time I think about it. But I also think about how important it is for me to treat Jill with the first-class love she deserves.
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My wife too suffers of HD and is at a more advanced stage than described. I share with you the terrific feeling each time she goes one step down. Initial stages of the disease are easily controlled by xénazine (to control chorea) and sertraline (to counter depressive effect of xénazine). The drawback is that it induces somnolence and doses cannot be extended indefinitely..
I will share with you one observation that I would like to check: In autumn 2021, my wife started a new symptom, she was no more able to stand on her chair, she was progressively leaning and might fall. I had to support her during lunch and dinner, and to help her to eat. It happens that we are used to start each lunch with either melon or half avocado, depending on season. In autumn 2021, I observed that when we switched from melon to spanish avocado, this sympom disappeared. In spring 2022, I was happy to find again new melons (my wife loves it!). one and a half week later, the symptom appeared again. Our neurologist does not believe it and thinks it is again one of the numerous trolls on the internet. But I started again to buy avocado for my wife (in addition to melon) and one or two weeks later, the symptom disappeared again. It is not a magical trick to recover of the disease, but at least for that symptom, it seems to be a correlation. Question: has anyone else observed such effect?
I post from France and apologize if my english is not correct or enough clear
Thank you for reading our column and reaching out. I am sorry to hear of your and your wife's struggles, and I hope your wife's neurologist listens to you because treatment is a two-way street. I hope you keep going until you find a doctor who is able to listen and help. I am not a physician and can honestly say I have not witnessed anything like that with Jill. Since I am not a medical professional, I cannot give medical advice, but Jill explained some things that have happened with her family. She said her father had allergies to some foods, so those foods made his chorea worse. Most of Jill’s family have pretty severe allergies, and one day they can eat something, and then the next day it could give them hives. Jill loves fruit, and in the past year she has had to stop eating strawberries and honeydew melons. The other thing Jill shared was her father had issues with swallowing certain foods at a point. He could eat mashed potatoes but couldn’t swallow baked potatoes. Things would get stuck in his throat, and his whole body would react to him trying to swallow. As long as the melons and avocados don't trouble her, I hope she can continue to eat them.
I know your wife is lucky that you have the desire to find out the reasons behind the things that seem to make her chorea worse. Keep being her advocate and remember: you know her best. You see what she’s experiencing and sharing those things with her doctor is always a good thing.
Sending healing Love and Reike to you and your wife. My 38-year-old son, has inherited HD from his mom.
With a deep understanding of your concern with your beloved..Sending love and prayers your way..
Thank you for sending your love and prayers. Jill and I appreciate it. I am so sorry for your son and the loss your family has experienced from HD. I am hoping for some big steps in the research to cure HD before the young people in our lives begin to start experiencing symptoms. You all are in our prayers. Take care.
Thanks for sharing your feelings. It's sort of a consolation for Huntington Companions to know that there is always someone somewhere experiencing the same troubles and feelings.
Thank you for your kind words. I am saddened to know you are going through the same things, but I’m glad you are feeling supported and not alone. Readers like you are the reason we keep sharing our lives. Jill understands the struggles caregivers have and wants to give others information she had to learn the hard way. Take care.
My daughter is in the middle stages of HD.She came to live with me 5 yrs ago.When she moved in with me, she had a lot of sleep issues,staying up until 4am and sleeping all day.She refused to bathe or brush her teeth.She had a mouth full of dental caries and some obsessive cumpulsive behavior.But she was still driving and I felt she was able to at that time. I made some changes in her life based mostly on diet, sleep and stress reduction.Even though her disease is progressing she now sleeps well, her mood is phenomenally happy,all her teeth have been fixed and the obsessive behaviors have modified immensely.It is anecdotal, but I know the changes we have made have helped and by the grace of God will keep her as good as possible until our hopes of treatment for this unbearable cruelty will come to fruition
I am so sorry to hear your daughter is suffering from HD, and I can't imagine how difficult that is to witness. Our daughter is gene positive but has not started showing symptoms. It sounds like you have been a great supporter of her, and she is very lucky to have you. We have talked to many people who don’t have a support system so we are aware of how much more difficult it is when they are battling HD. It’s important to keep fighting the decline they will experience as their condition worsens. Some families look at their loved ones' issues and blame them on the disease and assume there’s nothing that can be done. Jill reminds me often to let her know when I notice declines so she can work on fixing them instead of accepting them. Keep up the good work, and I hope this column helps with your mental state.
Hey Carlos, Thank you for sharing this. My wife Ashley is suffering from this horrible disease as well and it kills me to see her struggle.
We visit the Boston hospital too for the HD Enroll. My prayers are with you and your wife. This is not by any means an easy journey.