Action Duchenne International Conference London November 2015 Anny Madsen Occupational therapist

Population ≥18 years : (87)77, (18-46 year) Population ≥18 years : (87)77, (18-46 year) Steroid treatment: none 72 had ventilator support, 58 by tracheostomy All had a powered wheelchair Which they all used during the entire day. All had a powered wheelchair Which they all used during the entire day. 52 had had spine surgery. All were able to operate the wheelchair and a computer Until the age of 23,5 (median), they live with their parents, then move to their own place In the age group ≥25, 7 lived with their parents 4 live in public assisted facility In the age group ≥25, 7 lived with their parents 4 live in public assisted facility 4 lived with a partner, 2 have fathered a child 4 lived with a partner, 2 have fathered a child

All but 1 had their own car, and drove (median) km/year All but 4 had 24 h. personal assistance provided by a team of 5-7 helpers. All have their own income. Only 4 had difficulties in making ends meet financially All have their own income. Only 4 had difficulties in making ends meet financially 70 received a pension 3 were employed in paid part- time jobs. 31 regretted not having given education a higher priority. 25 had attended a non-formal adult education program (Folk high school). 9 had completed a business degree and 3 had a BA. 25 had attended a non-formal adult education program (Folk high school). 9 had completed a business degree and 3 had a BA.

They felt safe in their daily lives. Most ( 59 ) said that they could participate in the activities they wanted to participate in. Most of them use their car a lot and go on holidays. 18 had been abroad. Some (13) were active in sports, primarily wheelchair soccer. Most of their leisure time going on with interest you can grow at home, listening to music, play on PC, social media. 74 had at least one friend. The younger they were, the more friends. If they had worries, they worried about loss of hand function, cardiac problems, chocking on food, or their personal assistant scheme. They shared their worries with their parents (35), helpers (25), or friends (17). 4 had no one to share worries with. They shared their worries with their parents (35), helpers (25), or friends (17). 4 had no one to share worries with.

A typical day He gets up around 10 a.m. (range: 6.30 a.m. to 2.30 p.m.). The older he is, the later he gets up. Getting up, morning hygiene, breakfast etc. takes 1-2 hours. If he needs a bath, it takes 1-4 hours. If he does not have school or work, he spends his day at home, only leaving to grocery shop, etc. with his helper who drives his car. He eats 2-3 meals per day. He spends 6 hours on his computer playing games, on social media, etc. Variation hours He spends 4 hours on TV. Variation 0-14 hours Goes to bed around 12 p.m. Variation 7 p.m. – 5 a.m. He needs help to turn in bed at least 4 times during the night. Domestic chores (cleaning, laundry, etc.) are scheduled and carried out by his helper. His day doesn’t feel long. Boredom is not a option.

We know the adult DMD men as men who feel safe dream about girlfriends and sex in their youth long for a life partner and a family of their own when they get older are satisfied with their lives spend their happiest times with friends and family are very interested in computers, sports and music don’t see themselves as disabled persons mostly, feel respected as equals

In Denmark a person with DMD has acces to: Independent housing Disability-friendly housing Own van 24 h personal assistance Free physiotherapy Free education Free powered wheelchair and individual adaptation of operating systems and sitting posture Acceptable income base Timely non-invasive and invasive ventilator treatment Timely tube feeding

Challenges by age Hand function minimized Constipation Mouth opening and processing food with the tongue Swallowing difficulties / feeding tube Daily routines, personal hygiene and activities take time Pain from sitting Decrease in physical energy / do not have the energy to do much Life curtailed, friends become fewer Wintertime

RCFM’s challenges Maintaining the long life perspective, at any time Stay in touch with the men Encourage them to contact us know when difficulties arise Increase their participation in educational and leisure activities Support them in being employers for their team of personal assistants

We will intensify our efforts on Maintaining the long life perspective, at any time Staying in contact Making sure they get cardiac and medical evaluations Accumulating knowledge about alleviating constipation Maintaining mobility and avoiding joint and muscle contractures, especially in hands and neck Keeping sitting posture symmetric both in body and head Securing that they can manage their computer and the powered wheelchair Enabling them to be the master of his own adult life and being employers for their team of personal assistants Expect that they are using their skills from the time we get to know them Gathering knowledge about end-of-life care