Living with MND – a search for normality
02 December 2007
The shock of a diagnosis of ALS/MND is usually followed by prolonged uncertainty about how the condition will progress and how quickly. Adapting to this new situation is a practical and emotional challenge which was explored in a session at the 18th International Symposium for ALS/MND.
Louise Locock presented the findings from a qualitative study by the University of Oxford on behalf of the MND Association. The study involved interviews with 40 people living with MND.
The interviews will form part of a new website where people with MND and healthcare professionals can see and hear people with ALS/MND talk about their experiences. The aim is both to inform and support others with the condition and their carers, and to offer a teaching resource for healthcare professionals to gain greater insight into personal perspectives on living with ALS/MND.
Participants described an often lengthy search for diagnosis and how the shock of learning they have MND may be tinged with relief that they know at last what they are dealing with.
Over time, many people report engaging in a process of re-establishing a sense of normality and regaining control and purpose in their lives. Because ALS/MND often progresses rapidly, this is not simply a one-off adjustment, but a repeated cycle of facing each new symptom and incorporating it into normal daily life.
Strategies to remain mobile feature prominently, and the sense of freedom and normality afforded by driving is of particular importance.
Holidays are also identified as a key way of maintaining social participation. Trying to keep doing the ‘normal’ things – whether this is work, talking, household tasks, leisure activities or personal hygiene – may give way to a revised sense of what is normal, and a search for practical alternative ways to do things, or different things to do.
The website MND section of the DiPEx website (www.dipex.org) is due to go live at the beginning of 2008.
Louise Locock presented the findings from a qualitative study by the University of Oxford on behalf of the MND Association. The study involved interviews with 40 people living with MND.
The interviews will form part of a new website where people with MND and healthcare professionals can see and hear people with ALS/MND talk about their experiences. The aim is both to inform and support others with the condition and their carers, and to offer a teaching resource for healthcare professionals to gain greater insight into personal perspectives on living with ALS/MND.
Participants described an often lengthy search for diagnosis and how the shock of learning they have MND may be tinged with relief that they know at last what they are dealing with.
Over time, many people report engaging in a process of re-establishing a sense of normality and regaining control and purpose in their lives. Because ALS/MND often progresses rapidly, this is not simply a one-off adjustment, but a repeated cycle of facing each new symptom and incorporating it into normal daily life.
Strategies to remain mobile feature prominently, and the sense of freedom and normality afforded by driving is of particular importance.
Holidays are also identified as a key way of maintaining social participation. Trying to keep doing the ‘normal’ things – whether this is work, talking, household tasks, leisure activities or personal hygiene – may give way to a revised sense of what is normal, and a search for practical alternative ways to do things, or different things to do.
The website MND section of the DiPEx website (www.dipex.org) is due to go live at the beginning of 2008.
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Notes to editors
The 18th International Symposium on ALS/MND is taking place in Toronto, Canada, between Saturday 1 and Monday 3 December. The event is organised by the UK-based Motor Neurone Disease (MND) Association and hosted this year by the ALS Society of Canada.
The MND Association says:
The MND Association funded this study into experiences of MND and representatives from the MND Association forms part of the DiPEx advisory group.
The MND Association says:
The MND Association funded this study into experiences of MND and representatives from the MND Association forms part of the DiPEx advisory group.
