Data on Wheels ~ ALS

Fire TV
Fire TV - Image 2
Fire TV - Image 3

Fire TV

Steve uses smart TV products from Amazon. We have found the Alexa built-in and Alexa enabled Fire TVs very accessible using voice and remote apps.

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Description

When Steve struggled to pick up and push buttons on the remote control, we decided to purchase an Amazon Fire TV with Alexa built in. This TV is basically an Alexa device. Steve used his voice to control all the functions on the TV.

We purchased a smaller Alexa-enabled Fire TV for Steve’s office. He used the Echo in his office for voice control of this TV. It didn’t work as well as the built-in model. Amazon Fire TVs have a mobile app remote control which Steve downloaded on his phone. Using Phone Link, Steve can control all the Fire TVs in the house from his Tobii device.

At some point, we also got a Fire TV Stick. We used this when we traveled. This is a good option if you want to use the remote app on an existing TV. It is a great option to take your streaming apps with you.

We purchased one for our bedroom about a year later. It was the first time we have ever had a TV in the bedroom during our marriage. We are very thankful for this decision as Steve has spent more time in bed as the disease progresses. The remote app has been a boon to his independence.

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We are using smart house technology to give Steve more independence throughout the house. We use a combination of hardware and apps to make this work.

On a separate note, I have generally been opposed to smart house technology because I work in data and security and understand the risk. However, I realized that the benefit outweighs the risk. These apps definitely improved my quality of life. – Steve

Additional information

ALS toolboxes

Steve’s ALS stage

Early, Late, Middle

We are using these stages to help you understand when these tools and apps were most effective for Steve.

EARLY STAGE | July 2021 – November 2022

From first symptoms to the walker

Key points
• No ventilation
• Able to walk without help
• Limited upper limb function

MIDDLE STAGE | November 2022 – August 2023

From walker to power chair

Key points
• Limited ventilation with an NIV
• Help needed to transfer
• Limited upper and lower limb function
• Work transitions
• Supplemental nutrition through feeding tube

LATE STAGE | August 2023 – Current

Power chair

Key points
• 50% to full time ventilation
• From NIV to tracheostomy
• Lift transfers
• Loss of limb function
• Most nutrition through feeding tube

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Copyright 2025-2026 | Steve Hughes, Data on Wheels