Data on Wheels ~ ALS

Cough assist

Cough assist

We used this cough assist machine while Steve was still using his NIV. We used it twice a day to help Steve keep his lungs clear.

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Description

The first time we used it, Sheila cracked up laughing at how Steve looked while he was using it. It added some humor to our lives. We also used it if Steve felt he needed it more like during allergy season.

Steve worked with our respiratory therapist to dial it in. It is important for you to know the numbers. During one of Steve’s hospital stays, they used it with the wrong settings, and it was very uncomfortable for him. We got the settings matched up and were good to go.

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Additional information

Steve’s ALS stage

Late, Middle
Ventilation type

Noninvasive
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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