Julie – using NIV kit 24 hours

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Featured in Julie and Russ's story
Julie and Russ

Julie – using NIV kit 24 hours

"Start simple, then add what you need as you go - it's about choice"
- Julie

Using your NIV kit 24 hours a day can be a practical challenge. Little niggles that were bothersome before can become bigger issues when NIV is used all day and night.

Your MND/ALS care team will help you in this transition period. They can give you extra masks, a spare machine and lots of support. There are a range of accessories that can help deal with problems.

In this film Julie and her carer Libby show us the systems they have set up to meet Julie’s needs day and night. It may give you ideas of some things that could work for you.

Julie has a different set up for day and night. Many people are fine with the same set up across 24 hours. Talk to your care team if you feel your breathing is changing and your settings or kit may need an update.

Top tip:  Labelling the different bits of your kit and accessories can be very helpful to avoid mix ups.