We purchased a split king from Ghost Bed. It has separate controls to raise the feet and head, vibrating massage, and USB power. The mattress is very comfortable. Â We kept the bed together to start with. As I got worse and needed more care, we separated the bed so my caregivers could easily access me from either side of the bed.
Many people get hospital beds which may be covered by insurance. We purchased the bed before Steve needed something special. We were due for a new mattress, so we looked with his future needs in mind. The only feature that a hospital bed has that we miss with Ghost Bed is the ability to raise and lower the entire bed. That feature would make caring for Steve easier on his caregivers’ backs. We are very happy with our decision and recommend it.
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| Steve’s ALS stage | Early, Late, Middle |
|---|---|
| ALS toolboxes |
We are using these stages to help you understand when these tools and apps were most effective for Steve.
From first symptoms to the walker
Key points
• No ventilation
• Able to walk without help
• Limited upper limb function
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
Power chair
Key points
• 50% to full time ventilation
• From NIV to tracheostomy
• Lift transfers
• Loss of limb function
• Most nutrition through feeding tube
Copyright 2025-2026 | Steve Hughes, Data on Wheels
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