A dead car battery reminds my wife of how Huntington’s affects her
It's frustrating when your body doesn't work the way you need it to
It was 6 a.m., time for me to leave for work. I got into my car, pressed down on the brake, and hit the start button. The engine sputtered and then made no sound.
Uh-oh.
I repeated the steps, but again, there was no comforting “vroom” sound of the engine coming to life.
Sigh. I slowly realized my day would be much different from how I’d imagined it’d be.
After I called AAA to request help, I went back inside to wait. I woke up my wife, Jill, to let her know what was happening. She came downstairs and gave me an “I understand the car failed when you needed it most” hug.
Jill, who was diagnosed as gene-positive for Huntington’s disease (HD) in 2018, said some days she feels the same way about her body and mind. Ever since the diagnosis, her symptoms — including chorea, anxiety, apathy, and depression — have been progressing, so much that she knows it’s time to file for Social Security Disability Insurance.
Jill’s face was sad when she shared her frustration and anger about her body not working when she needs it to. “Problems like words disappearing in the middle of a conversation make me feel like my mind is betraying me,” she said.
The words are there. She knows she’s used them before, but she just can’t access them as she used to.
Jill feels betrayed by her emotions when she can’t control her anger. Or when she blurts out something she shouldn’t. Or when she can’t control her anxiety when she wants to leave the house.
“It’s not me,” she said. “It’s like something else is driving my emotions.”
She added, “All of that is topped off by my body deciding it doesn’t care if I want to sit still and have a conversation. It may decide I can sit down, but I’ll make weird, jerky movements. Or I can sit down for a few seconds, but then have to get back up for no reason other than my body hating me.”
Hearing Jill say “hate” was startling since she rarely uses the word, but her description of how HD has affected her gave me a deeper understanding of the day-to-day struggles she faces.
I love Jill, and I wish I could call an AAA-like organization for her HD. I wish I could just pick up the phone and request that someone come to our house and jump-start her body into a new, healthier version. I’d pay anything to see Jill “fixed.” For now, I’ll settle for loving her and, like AAA, being on call for her 24 hours a day.
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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Kay Renz
Carlos, I feel your pain. My daughter is 62 years old, She was finally diagnosed in 2010, but showed cognitive symptoms prior to diagnosis before the motor symptoms evidenced. Thankfully, I was able to keep her living with me until I fell and hit my head twice and realized we were not safe last year. I agree with your wife about Social Security disability, but my advice is do it immediately. The process is complicated. In addition, you and she need to think about power of attn'y over health and finances while she is still able to steer the wheel of your marital vehicle.
Carlos Briceño
Thank you Kay!
I am sorry to hear about your falls. I hope you are now in a safe environment that works for both of you. I appreciate your advice. I am helping her through the process and I am hoping things go well.
Teresa Butler
Hi Carlos
My partner has Huntington along with his daughter and one of his sons, the other doesn't want to be tested - i think he has it too. Such a cruel disease. I am struggling finding answers/advice to some of the daily things, but your "dead battery" one hit a chord. My partner has over the last year got worse. He takes ages to do anything and is a mechanic but it takes him a long time to fix anything. We all get frustrated but he is on a trial, not sure if placebo or real drug for apathy, and is a bit better, but apathy still bad, but now i notice he cant seem to concentrate on anything for a long time, paces around, says things then apologises afterwards says doesnt know when to stop - is this what your wife experiences too. I am trying to cope with it.
Carlos Briceño
Thank you for reaching out and sharing your struggles. There are so many people experiencing the struggles you describe in silence. Sharing our hardships helps others who feel alone or are searching for the truth about HD. I have seen those same symptoms with many of Jill’s family members and watching that decline is difficult and can be hard on the caregiver. If you are able to find a support group in your town, I hope you are able to sign up for one. If you can’t or would like to find support and more information you can go to https://hdsa.org/find-help/community-social-support/. They have some great resources for families.
Lacy
I have HD I'm right at stage 3. I'm having more issues daily and the way saying it's like a dead car battery is accurate. I am 37 got told at 30 I have it. My son has the gene and 1 day he'll be active my daughter won't thank God. My kids and I look forward to these to see if there isn't hope for me maybe there will be for me son and grandkids.
Carlos Briceño
Lacy, thank you for reaching out with your story. I hope there will be cure in our lifetime so no one will have to only hope for a better life for those who come after us.