20

ideas submitted that could potentially solve Giacomo’s challenge

Giacomo and his wife Silien love to travel, but her multiple sclerosis (MS) has a direct impact on her ability to get around, imposing limits on the life they live together.

Giacomo’s challenge

Giacomo’s wife Silien struggles with mobility.

She’s unsure on her feet, often relying on the closest wall to find her balance, and regularly needs periods of rest. Whilst she won’t let this stop her from doing things, it does impose limits on the life they live together.

“We were both keen walkers. We would travel to different places and simply enjoy walking around. This has faded away over the years, for obvious reasons. From time to time, she regrets that.” 

The impact on Giacomo's life

Anxiety 

The uncertainty that comes with Silien’s limited mobility can mean many everyday situations are a source of anxiety for both herself and Giacomo, and this has had a real impact on her self-confidence.

“At the airport or in busy stations she’s a bit worried about being bumped into because she recognises the fact that she is more fragile, and in a sense, this also projects on me. When she is travelling on her own, I have a little anxiety.”

Acceptance 

Along with the physical limitations come the psychological ones. Whilst accepting life with MS is one thing, accepting help can be another. And this acceptance can be made harder by the stigma often attached to walking aids. Although they can help people overcome their mobility problems, using them can create further anxiety around how they are perceived and treated by others.

Whilst Silien needs help in steadying herself and in walking long distances, she doesn’t want her MS to define her, or for other people to see her as an ‘MS sufferer’.

The bigger picture

Approximately 70 – 80% of people living with MS experience difficulty walking.1

These difficulties are related to a number of factors – from muscle weakness and numbness caused by slowed or altered nerve conduction, to balance issues and unsteadiness.2 And they are difficulties that many members of the MS community are living with every day:

 

“My abnormal way of walking is a constant source of morbid fascination to others. This is increasingly leading me to shut myself away at home.”

– Patrizia, Italy – The World vs.MS challenger

“I can’t walk on my own, I’ve always got to be holding on to something and even then I’ve fallen several times as I’ve got balance problems.”

– Rosa, Portugal – The World vs.MS challenger

Your stories

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References: 1. Culpepper WJ et al. VHA Multiple Sclerosis Surveillance Registry and its similarities to other contemporary multiple sclerosis cohorts. J Rehabil Res Dev 2015; 52(3): 263-272. 2. Walking difficulties. Multiple Sclerosis Trust. Available at: https://www.mstrust.org.uk/a-z/walking-difficulties. Last accessed: August 2016.  3. Prevalence and incidence of multiple sclerosis. MS Trust. Available at: https://www.mstrust.org.uk/a-z/prevalence-and-incidence-multiple-sclerosis. Last accessed: July 2016. 4. Introduction to MS. MS Trust. Available at: https://www.mstrust.org.uk/understanding-ms/what-ms/introduction-ms. Last accessed: August 2016.

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