Adapting to life with a neuromuscular condition
Welcome
People who either live with neuromuscular conditions or support family members with a condition share their experiences alongside advice from professionals on this platform. Their stories and advice are intended to give you hope and boost your confidence to live the life you want.
The Centre for Neuromuscular Diseases (NMD) at University College London Hospital developed this platform in partnership with the social enterprise Bridges Self-Management, which is an expert in evidence-based approaches to co-production and self-management support.
For patients
You can read or listen to the trials and tribulations people and their families faced after developing a neuromuscular condition. They share their experiences and tips alongside advice from professionals to help you find your very own way of living with a condition.
Patient stories
Read and listen to stories from people who live with different neuromuscular conditions. They follow the path from their initial reactions after diagnosis, to adapting their lives, and moving forward with new dreams and ambitions.
Tatum, 25 years old
I have a rare progressive disease called Limb-Girdle Muscular Dystrophy, type 2B (LGMD2B)
Andrew, 38 years old
have Type 2A LGMD. I use a wheelchair and enjoy taking my son on adventures around the UK.
Victoria, 27 years old
I am half Middle Eastern and Asian. I love languages and technology. I also like socialising with others and the diversity they bring, being mixed myself.Patient advice
Read and listen to handy hints from different people with neuromuscular conditions on how to cope with changing abilities, maintaining independence, and adjustment of a life plan.
Guide to making your own plan to achieve a goal
You can achieve more than you think by breaking a big goal down into a series of small steps and ticking them off as you go. Not only will it help you achieve the things you want to do, but it can be really helpful to be able to look back on the successes you have made, however small they may seem.
For family and friends
A diagnosis of a neuromuscular condition can affect loved ones almost as much as the person who has been diagnosed. You can read and listen to the trials and tribulations that families faced. Family members share their experiences and tips to help you find your very own way of supporting someone living with a condition.
Family stories
Read or listen to stories from family members of people who live with different neuromuscular conditions. They discuss challenges in caring for a family member, such as how to balance help and assistance with encouraging autonomy and independence.
Family advice
Read or listen to handy hints from family members of people who live with different neuromuscular conditions on how to support someone to cope with changing abilities, maintaining independence, and adjustment of a life plan.