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Open Door: August 2015

A free, quarterly newsletter for people with multiple sclerosis, their family and friends and supporters of the MS Trust.

Every issue we report on our work, aiming to make life better for everyone affected by MS, and suggest ways you could get involved.

We also round-up the most relevant MS news and research projects; share the real-life stories of people living with MS; and introduce advice from healthcare professionals that could make a practical difference to you today.


Read the latest issue of Open Door exactly as in appears in print:


Download the latest issue of Open Door as a PDF (2.2 MB)



Or read the original articles as they appeared on our website:


News

Latest news from the MS Trust including reports on:


Research update

A round up of the latest MS research:


Proactive treatment

  • A new era in MS care?

  • In the past, people diagnosed with MS were sometimes told to 'wait and see' how their MS developed before making decisions about whether to consider disease modifying drugs. But the new MS treatment guidelines published by the Association of British Neurologists in June recommend that people with MS should begin treatment as early as possible. Are we entering a new era of proactive MS care? Open Door finds out what proactive treatment means for people with MS and MS services.

  • "I think the proactive approach is very reassuring"

  • Dr Belinda Weller is a consultant neurologist in Edinburgh. She tells us how she first came across the idea of early, proactive treatment, and the difference it's made to how she works with people with MS

  • "If you have MS, you can drive change"

  • Professor Gavin Giovannoni is Chair of Neurology at Barts and The London School of Medicine and Dentistry and is widely credited with popularising the idea of early treatment and treating to target NEDA in MS

  • "Doing nothing carries the biggest risk, in my view"

  • Eleanor was recently diagnosed with MS and, after conducting personal research and consulting with her health professionals, opted for Lemtrada as her first treatment. She explains how she came to her decision

  • Considering the risks

  • When Ema was diagnosed, injectable MS drugs seemed to be keeping symptoms under control. But a severe relapse made her consider more powerful treatments


Practical tips

  • Dealing with ataxia and tremor

  • Ataxia is the medical term that describes a lack of muscle coordination anywhere in the body. Typically, it can lead to tremors in the arms, legs, head, trunk or eyes and can even affect speech and swallowing. Currently there are no drugs that will get rid of the shaking or tremor that is caused by ataxia. In this article, physiotherapist Wendy Hendrie introduces some ideas that many people with MS have found helpful. Try them out and see if they work for you or, if you prefer, ask for an assessment by a physiotherapist with expertise in MS


FES

  • A spring in your step

  • Foot drop, or dropped foot, is a symptom which affects many people with MS. It's caused by weakness in the ankle or disruption in the nerve pathway between the legs and the brain, which can cause trips and falls. However, it can be treated by using a functional electrical stimulation device, which discharges a small electrical pulse to your nerve to help your foot lift correctly


Get involved

  • Where there's a will...

  • When Vicky Edwards was buying her first property it made her realise how important it was to make a will. As well as ensuring her loved ones were provided for in the event of her death, it was also an opportunity for Vicky to support her favourite charity


MS perspective

  • MS Trust volunteer Liz Thompson

  • Liz Thompson was diagnosed with MS in 2009. While looking for information to help her make sense of her condition, she discovered the MS Trust website. She very soon became one of our most passionate supporters (and as result has developed a new career as a cake baker!). One of the ways she supports the work of the MS Trust is by volunteering every year at her local Cards For Good Causes shop. We asked her what motivates her to volunteer, and what she gets out of working in the shop.


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