Because of Huntington’s, my wife, Jill, is on the ride of a lifetime
Symptom progression is making some tasks increasingly difficult
Halloween is coming next month. It’s my wife Jill’s favorite holiday, mainly because she likes scary experiences. Her excitement is like a child’s when she enters a haunted house or steps onto a roller coaster. There’s something about the rush — that heart-pounding excitement — that makes her fearless and fully immersed in feeling alive.
This summer, though, something changed — not with her excitement, but in how her body responds to the new barriers Huntington’s disease has thrown up for her. While Jill is still as tough as ever, Huntington’s is making simple things more difficult.
Earlier this year, we bought season passes to several amusement parks. During a recent trip to one, I could see that it was taking a toll on her. The lines were long and crowded, which made Jill uneasy. The heat was relentless, and I could see her struggling to control her body temperature, despite the many fans and cooling towels she brought with her. What stood out the most was when we got to our favorite water ride, which has long “logs” propelled by the water.
Stepping into the log to sit down used to be nothing for her. She used to quickly hop in and sit down, ready to be tossed around by the ride’s twists and turns. Things are different now.
Huntington’s disease has been chipping away at her balance and coordination. She’s not as sure of herself when walking or holding on to something as she used to be. I watched as she hesitated, trying to find her footing. The log unexpectedly jolted just as she was stepping in, and her upper body went one way and the lower half the other. She didn’t say anything about it, but I could tell she was in pain, particularly in her back.
Weeks later, her back is finally feeling better. Last night, we discussed the possibility that these types of amusement park rides might soon become too dangerous for her. She looked sad but acknowledged it.
So Halloween is coming up. We’ll watch scary movies and enjoy photos of our daughter dressed in a spooky outfit. But if and when we get scared about how Huntington’s has negatively affected our lives, I know Jill will be OK. I will remind her that life is a roller coaster, and as I’ve pointed out before, not only does Jill love being scared while riding one, but also I know she is strong enough to accept it as the ride of a lifetime.
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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Bruce Saltsman
My wife’s balance and walking abilities have changed a lot this year.