As a life-shortening condition with no cure, MND information usually focuses on symptom management for people with the disease, and wider support for carers and family members. Making the most of life with MND takes a slightly different approach to quality of life, by concentrating on the enjoyment of hobbies and interests while living with the condition.
Various requests from people living with MND for this quality of life resource led to the development of the new booklet, and their comments helped shape it. Powerful viewpoints such as, “MND has affected my life, but I will not let it define it” provide inspiration and shared experience in the content.
The booklet highlights that interests do not necessarily have to stop with a diagnosis of MND, but adjustment may be needed. For a person living with the condition this could mean accepting help from aids or equipment in order to maintain independence or help their carer save energy. It may also mean taking part in assisted activities, or asking if a current hobby can be made accessible for their needs.
Those featured in the booklet offered their own perspectives. Dave, a keen runner, shared how he continues his passion, “Eventually MND got to my legs, so I cannot run anymore, but I find alternatives like wheelchair racing.”
While symptom management is not the primary focus of the booklet, different MND symptoms are mentioned in terms of how they may challenge the activities people enjoy. Where these challenges are mentioned, equipment, aids and relevant health and social care professionals are highlighted, so that the reader knows where to find the right support. This can help them continue doing the things they want to do.
The guide may help people with MND think about activities they enjoy, or want to try, and how to approach these in a different way. Feature pages introduce people living with MND and their carers, who share their own approaches and ideas. These can help reduce feelings of isolation for others. When the booklet was tested by a group of user reviewers, one commented “It is good to see the faces of real people who provide comments in the booklet.”
The guide was reviewed by a group of experts during the development process, including a consultant in palliative medicine, a consultant clinical neuropsychologist, two occupational therapists and two MND care network co-ordinators.
To download the booklet visit Making the most of motor neurone disease or request a copy via email or on 0808 802 6262
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