Large generator

We knew we needed to be prepared for a power outage as Steve’s dependence on ventilation increased. Whole house generators are quite expensive. We also wanted something we could travel with. We knew we needed to be prepared for a power outage as Steve’s dependence on Ventilation increased. Whole house generators are quite expensive.

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Description

We also wanted something we could travel with. The generator we chose can power appliances and has wheels with a pull-out handle. We can travel with it in our van. It powered the NIV and Steve’s laptop from Kentucky to Minnesota without issue. This also gave us backup power at the hotel.

One other note, this generator works as a power strip. All of Steve’s equipment is plugged into it so if we have a power outage his ventilator continues to work.

This generator also comes with solar panels. This will give us additional time on the generator in the case of an extended power outage.

Backup power is essential when your basic needs like breathing require a machine. Most of the equipment we use has battery power like our ventilator and our lifts. The onboard power is usually sufficient but typically only lasts 4 – 8 hours depending on usage. But we wanted to be prepared for power outages and travel.

We had a situation where Steve’s NIV ran out of battery power at an event. We were able to get it plugged in, but it was going to take hours to charge before we could go home safely. Friends and family jumped into help. Our friends got us the Ryobi battery solution and our son in law brought our large generator from home about an hour away. We got home safely, and the importance of backup power was reinforced.


Ventilation Backup Power Estimates

Additional information

Steve’s ALS stage

Late, Middle

ALS toolboxes

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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