Life expectancy is improving so there are more people with Duchenne muscular dystrophy who are in their thirties and forties. But as muscles weaken, paralysis will set in. Young men may have difficulty chewing and swallowing food, this is called dysphagia. If it's severe, a feeding tube into the stomach may be needed. They will need help eating, drinking, going to the toilet, dressing, washing and being moved into bed and being turned in bed.
Many young men continue to be able to use their fingers well into adult life. Their ability to talk usually remains good, and can be helped with speech therapy and speech amplification equipment. Their ability to be able to think for themselves is unimpaired and, with support, men with Duchenne muscular dystrophy can play an active part in society.
THINGS TO CONSIDER:
- good access to computer technology
- discussions about implementing independent living
- finding and keeping a job
- identifying and managing depression
- encouragement of emotional support outside the family in friendship groups.