Experiencing mobility loss
10 Dec 2003
Many people with MS experience problems with their mobility, during relapses or as a result of disease progression. Declining mobility is associated with a reduction in social functioning and decreased abilities to perform self-care and leisure activities. These changes require the affected person to adapt psychologically, emotionally and physically to this reduced mobility.
This study used interviews with a total of 27 people who were over 55 years old and had had MS for more than 15 years, to explore their perceptions and thoughts on having MS, their own mobility needs and concerns. Participants were also asked to report their experiences of limited mobility, the consequences and how they dealt with these.
Three main factors were found to contribute to the participants mobility experience, as a person with MS:
The other consequence of a lack of mobility was contemplation on the future. All of the participants reported that they were very aware that their lack of mobility and other symptoms were likely to progress. Many expressed fears and uncertainties about the future and were particularly concerned about becoming a burden to family, friends and carers.
The authors suggest that mobility issues are of high importance to older people with reduced mobility, due to MS, and highlight the need for healthcare providers to talk to people with MS about the reasons behind their symptoms, and their feelings about mobility aids. They also identified the potential positive aspects of people being able to talk and share their experiences and feelings with people insimilar situations. The complexity of living with and adapting to a progressive loss of mobility is highlighted and the importance of empowering the individual to feel they are in control of their situation is emphasised.
This report was published in Disability and Rehabilitation, October 2003. Vol. 25, no. 20, pages 1168-1180.
Three main factors were found to contribute to the participants mobility experience, as a person with MS:
- Reality of having MS; including dealing with physical sensations (e.g. loss of balance, and limb 'heaviness'), and the unpredictability of symptoms, which were found to influence the nature and extent of mobility.
- Mobility needs; including the need to maintain control over mobility, particularly in everyday tasks related to self-care. Participants reported that initial negative feelings about needing to use mobility equipment were often replaced with a sense of freedom and control, once they had made the decision to start using it.
- 'Practical' factors; including the physical environment, transportation needs, personal attitudes towards mobility aids and the level of social support available.
The other consequence of a lack of mobility was contemplation on the future. All of the participants reported that they were very aware that their lack of mobility and other symptoms were likely to progress. Many expressed fears and uncertainties about the future and were particularly concerned about becoming a burden to family, friends and carers.
The authors suggest that mobility issues are of high importance to older people with reduced mobility, due to MS, and highlight the need for healthcare providers to talk to people with MS about the reasons behind their symptoms, and their feelings about mobility aids. They also identified the potential positive aspects of people being able to talk and share their experiences and feelings with people insimilar situations. The complexity of living with and adapting to a progressive loss of mobility is highlighted and the importance of empowering the individual to feel they are in control of their situation is emphasised.
This report was published in Disability and Rehabilitation, October 2003. Vol. 25, no. 20, pages 1168-1180.
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