Julie and Russ
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Julie is a single mum and was diagnosed with MND/ALS 8 years ago. She continued working until she started using NIV 24 hours a day, thanks to support from her employer and her personal carers. Her 21 year old son Russ cares for his Mum at home in Sheffield and also lives in Manchester where he goes to University.
With an ace team of round the clock carers Julie has remained active even with her increasing disability. A boating holiday on an adapted canal barge was a recent highlight.
Julie and Russ have been discussing and planning for her end of life. In the Later Decisions section they share some of their personal reflections with us.