Living with MD days
FREE one-day events for adults with muscle disease
The Living with MD days help you gain more control of managing your condition on a day-to-day basis by sharing experiences and meeting others with similar conditions living in your area.
Through group discussion and presentations from people with positive experience of managing their condition, you will learn more about self-management techniques and develop daily living skills in subjects like talking to health professionals and accessing the right resources.
One participant commented on a recent event:
Sharing practical tips is particularly useful - it's often the day-to-day little things that even my Occupational Therapist is unable to advise on.
Topics covered include:
- Life maps and 'your journey with MD'
- Dealing with change
- Managing emotions and relationships
- Daily routines and 'practical' hints
- Accessing professional care
- Thinking about the future
Aims of the Living with MD project
Living with MD aims to help those affected by muscle disease by empowering individuals with muscle disease to take more control over their own treatment. By offering peer-to-peer support both at the session and afterwards, individuals can gain confidence in their ability to manage their own condition - reducing the pressure on their families and unpaid carers as a result. The London pilot was set up in 2008 and from 2010 Living with MD days will be held throughout the UK.
Living with MD Steering Group members
A steering group of adults with Muscular Dystrophy have developed content for the Living with MD Days and meet quarterly to ensure the topics covered meet the priorities of the people attending.
Meet some members on the steering group:
Paul James
Paul has limb-girdle MD
I joined the steering group at a crossroads in my life where I felt a change was due. As a father and having been married, I have an understanding of the difficulties, pleasures and pressures of family life. I have been in relationships with both able-bodied people and I am currently in a relationship with a disabled partner. I live on my own and understand the problems that entails but I also have care support which gives me insight into the benefits and drawbacks of these services. I feel I can impart some of my knowledge, experience and observations of life to help others that may face similar challenges but also share the pleasures and positive aspects that come hand-in-hand with MD. Although we all come from different backgrounds and lifestyles encompassing the entire spectrum of society, we all share common milestones in our individual journeys and it is those aspects I discuss in LWMD meetings in a way which breaks initial barriers enabling attendees to associate and engage with each other.
Mayo Marriot
Mayo is 36 years old and has Duchenne muscular dystrophy.
My name is Mayo and I am very pleased to be a part of the MDC Steering Group. I consider myself to be a very blessed individual; I am interested in psychology, counselling and spirituality and I recently started studying for a counselling diploma. My parents and younger sister live less than 500m away and we see each other every week or so; I have recently become a godfather to my nephew which is a responsibility I look forward to living up to. I am currently looking for part-time employment and I know that I will have a job soon. I live in my own flat and I have four Personal Assistants who do everything to enable me to live independently. I have a lot to be grateful for, and things can only get better!
Find out about up-coming Living with MD days
For further enquiries about this programme, please contact:
Claire Kelleher
020 7803 4805
c.kelleher@muscular-dystrophy.org
