Data on Wheels ~ ALS

Small generator
Small generator - Image 2

Small generator

After Steve’s tracheostomy, we discovered that the new ventilator required more power than the Ryobi batteries could handle. We made the decision to get a smaller generator. The advantages were more power than the batteries and more portable than the large generator. It runs the ventilator and the Tobii device for over 7 hours and can be hung on the back of Steve’s power chair.

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Description

The generator we purchased is no longer available. Here is an equivalent option.

Amazon.com : Jackery Explorer 1000 v2 Portable Power Station,1070Wh LiFePO4 Battery,1500W AC/100W USB-C Output, 1 Hr Fast Charge, Solar Generator for Camping,Emergency, RV, Off-Grid Living(Solar Panel Optional) : Patio, Lawn & Garden
Amazon.com : Jackery Explorer 1000 v2 Portable Power Station,1070Wh LiFePO4 Battery,1500W AC/100W USB-C Output, 1 Hr Fast Charge, Solar Generator for Camping,Emergency, RV, Off-Grid Living(Solar Panel Optional) : Patio, Lawn & Garden

As an Amazon Associate, I earn from qualifying purchases.

VOCSN Backup Power Runtime Estimates

VOCSN Backup Power Runtime Estimates

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.

Measured Power Assumptions

Scenario Estimated Average Load Notes
VOCSN ventilation only 35 W Measured normal usage. Brief peaks were about 40 W to 45 W every 5 seconds.
VOCSN ventilation with 2 LPM oxygen 60 W Estimated average based on cycling peaks around 160 W every 5 to 6 seconds.
Surface Pro with eye gaze controller 40 W Used for travel estimates with external power stations only.
Important: The Surface Pro and eye gaze controller cannot be powered by the VOCSN batteries. Surface estimates are only included with the Jackery and Anker external power stations.

VOCSN Batteries Only

Battery Source Capacity Vent Only With 2 LPM Oxygen
VOCSN internal battery 56 Wh 2 hrs @ 35 W 1 hr @ 60 W
VOCSN detachable batteries 167 Wh 5 hrs @ 35 W 3 hrs @ 60 W
VOCSN internal + detachable batteries 223 Wh 6 hrs @ 35 W 4 hrs @ 60 W

External Power Stations: VOCSN Only

Power Source Usable Capacity Vent Only With 2 LPM Oxygen
Jackery Explorer 1000 v2 963 Wh 28 hrs @ 35 W 16 hrs @ 60 W
Anker SOLIX F2000 1843 Wh 53 hrs @ 35 W 31 hrs @ 60 W

External Power Stations: VOCSN + Surface Pro + Eye Gaze

Power Source Vent Only Total Load Vent Only Runtime Oxygen Total Load Oxygen Runtime
Jackery Explorer 1000 v2 75 W 13 hrs 100 W 10 hrs
Anker SOLIX F2000 75 W 25 hrs 100 W 18 hrs

Quick Planning Summary

VOCSN batteries only Vent only: 6 hrs
With oxygen: 4 hrs
Jackery, VOCSN only Vent only: 28 hrs
With oxygen: 16 hrs
Anker, VOCSN only Vent only: 53 hrs
With oxygen: 31 hrs
Travel setup with Surface Jackery: 13 hrs vent, 10 hrs oxygen
Anker: 25 hrs vent, 18 hrs oxygen

Runtime estimates use whole-number rounding and are based on measured or estimated average wattage. Actual runtime can vary based on ventilator settings, oxygen use, battery age, temperature, charging behavior, and inverter efficiency.

Additional information

Steve’s ALS stage

Late
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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