Open Door: November 2014
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.
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Read the latest issue of Open Door exactly as in appears in print:
Latest news from the MS Trust including reports on:
Wales says yes to Sativex but no to fampridine
Changes to amantadine
In August we looked at the draft of NICE's Clinical Guideline on MS and concluded that it could mean a backward step for MS services. While the revised document is an improvement, we believe that it still falls short of a vision of a comprehensive service focused on the needs of people with MS
What did we want to see in the guideline?
Amantadine (Symmetrel, Lysovir), a drug used to treat fatigue in people with MS, has changed supplier. Auden Mckenzie (Pharma Division) Ltd will now supply the drug.
Once the existing stock has been used, there will be a change in the packaging and the branded name will no longer exist. Instead, amantadine will only be available in its generic form amantadine hydrochloride.
22 million to be invested globally over next six years
Managing your bowels: a guide for people with MS was commended in the 2014 British Medical Association Patient Information Awards in September.
If you have MS, are over 65 or if you're the main carer of a disabled person, you're entitled to the seasonal flu jab.
Research finds there is still a huge information gap when people are diagnosed with MS
MS Trust launches new resource to meet the needs of people newly diagnosed with MS
MS Trust fundraiser Jo Rodda has broken the world record to become the fastest woman to complete the Enduroman Arch to Arc Ultra Triathlon.
A round up of the latest MS research:
Salt is essential in keeping our bodies working, but too much salt can lead to high blood pressure. This study looked at whether the amount of salt you eat also affects your MS
Vaccination is the best way to prevent diseases like flu. This study reviewed research into flu vaccination in people with MS and looked at whether taking a DMT which affects the immune system made a difference
Fatigue is a common MS symptom and there are various ways of treating it. This study examined existing research to find out which was the most effective
This month we launch Making Sense of MS, our new resource for people newly diagnosed with MS. This project has been two years in the making and we hope it will make a real difference to how people deal with diagnosis and find information that's right for them. Jane from our information team explains how we developed the project
The information in Making Sense of MS is layered so that you can get the basics when you're first diagnosed, and then dig deeper to find out more information about what's most relevant to you at the time that's right for you.
Karen and Tracey both live in Sheffield, have MS and took part in the initial focus groups that helped us work out how to develop Making Sense of MS. Here they explain why they took part, what they make of it, and how they feel it will make a difference
Debbie Quinn and Gail Clayton are two of the MS specialist nurses we're working with to find the best way of getting information to people as soon as possible after their diagnosis. We asked them how Making Sense of MS will help them help more people living with MS
Sarah was diagnosed with MS in August this year but received no information about what MS is and how she might deal with it. We sent her the Making Sense of MS booklet and core pack of information and asked her what she thought
About half of all people with MS have problems at some time with aspects of memory, attention span or concentration. However, there is more and more evidence that cognitive rehabilitation such as brain-training exercises can make a real difference in helping you deal with these problems. Below Dawn Langdon, Professor of Neuropsychology at Royal Holloway, University of London, looks at promising research into MS and memory, while on the facing page, Jeffrey Gingold, who has MS and has written widely about cognitive issues, looks at what this means for people with MS
Jeffrey Gingold on the benefits of cognitive rehabilitation
In the last issue of Open Door we featured an article about caring for a newborn baby when you have MS. This issue we hear from the BBC journalist Elizabeth Quigley, about how she finds managing her MS while bringing up her four-year-old son, Matthew.
Andy Porter from Chester has run the Great North Run six times in aid of the MS Trust, raising more than £7,600 to help people with MS. Here he reflects back on his fond memories of the world's greatest half marathon.
Are you a teacher, Brown Owl, Scout Leader or parent? We are looking for schools or groups to get involved this winter in the MS Trust's first Reindeer Rally.
Last year the Al Jazeera TV journalist Stephanie Scawen presented MS and Me, a film about coming to terms with her MS and investigating the significance of the latest MS research. This year she was keynote speaker at the MS Trust Annual Conference, our event for MS healthcare professionals
Visit our Open Door archive to browse every article since 2001.