How a personal emergency alert device can benefit those with HD

If there’s one thing I know about my wife, Jill, who’s gene-positive for Huntington’s disease (HD), it’s that she seems to have a funny relationship with electronics. Over the years, her cellphones have developed quirks: missed calls, delayed texts, ghost vibrations when there’s nothing there. It’s not that she’s rough with her devices; they just end up misbehaving somehow.

I’ve teased Jill about having some kind of electric field, like she’s a magnet for malfunctions. She always laughs it off, rolling her eyes with that “oh, Carlos” look, and we move on.

But recently, this habit of hers — somewhere between mysterious superpower and technical glitch — has started to worry me. It’s not just about a delayed response or a missed call; now, it’s about HD and the safety issues that come with it.

Huntington’s, as it progresses, doesn’t just affect balance and movement; it can also affect swallowing and stability in ways that could lead to choking or a serious fall. And suddenly, Jill’s spotty phone becomes more than an annoyance. It’s a potential barrier to getting help.

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Preparing for emergencies with HD

As her caregiver, I’ve grown used to anticipating things that others might not have to think about: What would we do if she were home alone, in need of help, and her phone wouldn’t cooperate? Jill jokes that I’m a little overprotective, but the idea of her being unable to call for help in an emergency is one of those unshakable worries.

HD is unpredictable; she could lose her balance or have an issue with swallowing that could escalate in seconds. It’s one thing to recognize all the ways HD might cause harm, but it’s another entirely when a phone issue could prevent her from calling 911.

Of course, Jill has her own way of addressing my worries by using humor. After I brought this up, she joked that we should just get her one of those “I’ve fallen, and I can’t get up” devices we’ve seen on commercials. We laughed, but honestly, it wasn’t a bad idea. And even though she meant it in jest, I went ahead and started looking at options right after that conversation.

Having some kind of emergency alert system, one that wouldn’t fail even if her phone did, might be just the thing to give us both peace of mind. We’re at a point in this journey where having backup plans feels less like overdoing it and more like necessary support. There are some great new wearable devices out there with fall detection and emergency alert features, ones that go way beyond those featured in old commercials. I’m exploring our options because, while HD has taken so much out of our control, this preparation is one thing we can manage.

We’re fortunate that Jill can still laugh about it, that she can see humor even in the serious conversations. But underneath that laughter, she knows I’ll do whatever it takes to make sure she’s safe. And while a glitchy phone may be par for the course in her world, as her caregiver, I can’t afford to let a single tool fail her in a moment of need.

Maybe her next phone will work just fine, and maybe she’ll never need that personal emergency alert device. But if this experience has taught us anything, it’s that planning for the “what-ifs” is worth it. Because when peace of mind is within reach, it’s one more worry we don’t have to carry alone.

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.