DMD PathfindersA voice for adults living with

Duchenne

Registered Charity Number 1155884Scottish Charity No: SC045202

Intros from Adultswith DMD

• Jon Hastie, Trustee of DMD Pathfinders• Mark Chapman, Chair of DMD Pathfinders

Background

• Action Duchenne Takin’ Charge project – steering group

• The international DMD Pathfinders facebook group formed Dec 2012

• Ventilation workshop with Action Duchenne in Oct 2013

• What has this work meant for us?

DMD Pathfinders

• Established as a registered charity in February 2014

• 8/10 of our trustees are adults living with DMD• Currently fundraising to enable us to employ

paid staff to help realise our goals• The only charity using all its funds to help

adults with DMD with challenges they face right now!

Our Objectives

• A voice for adults with Duchenne• Advice & guidance on living with Duchenne• Advocacy to enable adults to access the

services they need• Projects to build skills and confidence for

young adults to enable them to reach their goals

Advice Guides

• Produced guide to ventilation and advice on preparing for power failure so far

• Our approach is to combine clinical advice with people’s experience and answer the real tricky questions like “how do I eat with a ventilator”

• Need guides on nutrition & swallowing, cardiac management, assistive technology, pain management, sex and relationships, independent living and many more!

Intro from clinicians

• Anny Madsen, DK

Population ≥18 years : (87)77, (18-46 year)

Steroid treatment: none

72 had ventilator support , 58 by tracheostomy

All had a powered wheelchairWhich 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 parents4 live in public assisted facility

4 lived with a partner,2 have fathered a child

Hot Topics

• What is your daily life like? challenges, opportunities, DMD in the day-to-day

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.

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 0-14 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

Hot Topics

• What are the challenges for adults and what support is needed from a clinician perspective? (Anny Madsen, DK)

In Denmark a person with DMD has access 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

Hot Topics

• What would help you most as an adult with DMD? What might DMD charities (including pathfinders and AD) do for you?

In Closing

• Anny Madsen – what can we improve clinically?

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

In Closing

• Mark Chapman – what is DMD Pathfinders planning?

In Closing

• Jon Hastie – Where to from here?

Find out more

• At www.dmdpathfinders.org.uk