Breathing Support
Research from groups like those at Newcastle University have shown that the use of nocturnal ventilation can significantly improve the quality and length of life of boys with Duchenne Muscular Dystrophy. It would appear that the use of assisted breathing machines at night help to prevent hypercapnia and milder symptoms caused by breathing difficulties at night.
The Newcastle Group start ventilation using non invasive methods when the boys forced vital capacity drops below 1 litre in conjunction with in depth questioning to elicit the onset of mild symptoms that suggest nocturnal hypoventilation. These include weight loss, daytime somnolence, frequent waking at night, chest infections and difficulty getting going in the morning after an unrefreshing sleep. The classical symptoms of hypercapnia (morning headaches and nausea) supervene after these milder symptoms, and they aim to introduce ventilation before these symptoms develop.
It is vital that you ask your clinician at every 6 month visit to test the young persons vital force capacity.
In the later stages of Duchenne it is common for young adults to use assisted breathing all day and night.
It is possible that improved sleep and better nightime breathing in conjunction with other factors such as Internet access, computer games, environmental control systems, electrically operated beds and indoor-outdoor electric wheelchairs are important factors that contribute to quality of life and independence.