Using technology in an FA household to enhance care

I imagine that many homes like ours, especially those with someone who has Friedreich’s ataxia (FA), can become quite loud. It’s common to hear requests shouted across our home, like asking for longer socks or a sweatshirt that was left on the bedroom floor. As my 13-year-old daughter Amelia’s FA symptoms have progressed, her need for support in daily activities has also increased. The names she most often calls out? Siri, Google, and Alexa.

When Amelia was 6, long before her diagnosis, but while she was already facing mobility challenges, we had an occupational therapist assess our home. This led to several improvements, including the addition of railings on stairs, enhanced lighting in dim areas, and the incorporation of technology to help her maintain independence.

Initially, I was hesitant about having too many devices listening in the background of our home. However, after being repeatedly interrupted the moment I sat down, I began to realize the value these tools offered. As many caregivers can attest, providing attentive and quality care to someone with FA can be challenging. Supportive technology can be a valuable resource.

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‘Hey, Google, turn on the fan’

Amelia often overheats at night, a common issue for those with FA. We invested in smart plugs connected to a fan in her room. The fan is placed far enough from her bed that reaching it at night can be difficult for her. With a smart plug, she can simply say, “Hey, Google, turn on the fan” to cool down without needing my help. This has been a game-changer for both her comfort and my sleep.

Additionally, we have smart bulbs installed throughout the house, allowing us to control the lighting remotely. Each bulb has a specific name (like “living room light”) so we can be precise. The lights can also be dimmed or brightened based on her needs.

We aren’t loyal to any particular brand, as we use devices from Amazon, Google, and Apple, some of which we purchased used or on sale. A few months ago, I found a bunch of smart light bulbs from a brand I’d never heard of in the clearance section of the grocery store. It was a great find, and I’m all about saving money.

‘Hey, Siri, text my mom’

While these devices assist Amelia in contacting us when she needs help, they can’t perform tasks like fetching snacks or navigating stairs. For that reason, I use a connected wristwatch that allows her to text me.

There are many brands and types of wearable devices available, but I specifically looked for one with a vibrating feature and a screen large enough to read texts easily. Even though I enjoy using technology to support Amelia, I want to ensure that I can be there for her when needed.

Although we began modifying parts of our home over five years ago, there is still much more we could do. As new technology is released, we have even more options to make our home “smarter.”

For me, it’s a matter of balancing what would be helpful on a daily basis with how easy it is to set up. We tried smart light switches last year, but I will never get back the hours I spent trying to set them up to work properly, to no avail. Overall, however, it has been a worthwhile investment in supporting Amelia’s independence and my ability to manage her care effectively.

Note: Friedreich’s Ataxia 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 another 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 Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.