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Open Door

08 November 2017
Jamie-Lynn Sigler

Actress Jamie-Lynn Sigler, who was diagnosed with MS aged 20, has been removing some of the stigma around walking sticks by talking on social media about how she uses hers. 

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25 July 2017
Group of adults holding a bar taking part in a pilates class

Open Door went along to a pilates class at the MS Therapy Centre in Norwich to find out why this type of exercise is proving popular among the MS community and meet some of the men and women reaping the rewards

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25 July 2017
Johnny

First Susan in Neighbours, then Nancy in Hollyoaks and now Johnny in Coronation Street: a series of soap characters have been diagnosed with MS. But is this a good way of raising awareness, or an unhelpful misrepresentation? We asked people on social media for their views.

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25 July 2017
Relationships

Relationships are full of ups and downs – it’s a fact of life. But when your partner has a long-term health condition like MS, there may be some extra bumps in the road for you both to navigate. Here are a few ways you can support your loved one along the way

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24 July 2017

When Denise Stephens was diagnosed with MS at the age of 24, she was disappointed to find that a lot of equipment recommended to her, made her feel like she was “living in a hospital”. Determined to find things that worked for her, and share her discoveries with others, she founded Enabled by Design, a community of people passionate about design for all

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02 May 2017
Maureen

Maureen has supported the MS Trust for many years, having lived with MS for over 40 years herself. Last autumn, she decided to do a skydive – aged 72 – to fundraise for the MS Trust and she has also left a legacy gift to us in her will

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27 April 2017
Info team

For 20 years the MS Trust has provided free, evidence-based information for anyone affected by MS – via our enquiry service, our printed publications, and, increasingly, our online and social media resources. We hope to help people understand more about their condition, consider their options and work effectively with their MS teams. Here we introduce some of the members of our award-winning team and some of the people they’ve helped

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27 April 2017
Driving and MS

One of the most common questions that our information team gets asked is: ‘Can I still drive?’ For most people with MS the answer is ‘Yes’, but there are some things you need to be aware of. 

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27 April 2017
Jon and Allison

The MS Trust and University Hospitals of Leicester NHS Trust are working together to make a difference for local people living with MS with the recruitment of the first new nurse placements in the MS Trust’s Specialist Nurse Funding Programme. We went to Leicester to speak to Allison, one of the existing MS nurses, and Jon, who has been living with MS for almost ten years, about the difference the new nurses will make. 

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20 February 2017

MS Trust went to Great Ormond Street Hospital to meet a paediatric MS specialist nurse, Katie, and two of the young people she works with

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17 February 2017
25 years of MS nurses

To celebrate 25 years of MS specialist nursing, we catch up with some of the first MS nurses to find out how care has changed during this time, and the challenges we still face to ensure nobody has to manage MS alone. 

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11 November 2016
MRI scans

When Phil Wood had an MRI scan earlier this year, he was given a CD of the images to take home. With the help of some image editing software he was able to get a whole new insight into what the scans showed. 

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10 November 2016
Pia Reynolds

Pia Reynolds was born in Denmark, but has lived in the UK for 25 years. This year she joined our MS Forward View project, helping to represent the views of people living with MS. She’s also involved with our new MS nurse funding project.

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10 November 2016
Susie in Brazil

Susie Twydell has always loved travelling and was determined she wasn’t going to let MS stop her. But taking her wheelchair wasn’t always straightforward. Pulling together her experiences, plus those of others around the world, she has created wheelchairworld.org, a website full of information, advice and useful links for wheelchair users planning trips to over 90 countries. 

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10 November 2016
Srin at the Golden Gate Bridge

Srin Madipalli was frustrated when he found that hotel booking sites often provided inaccurate information about their accessibility. Inspired by Airbnb, he’s set up Accomable, a new site designed to help you feel confident you’re booking accommodation that’s right for you. 

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09 August 2016
Light in the darkness

When Mel Hopper was diagnosed with MS in 2008, she felt like she had ‘stumbled into darkness’. But when she discovered blogs and forums for people living with long-term health conditions she found the personal support that helped her find a way out. Earlier this year she started her own blog at http://www.manylemons.com - here she explains why

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09 August 2016
15 minutes with MS Trust supporter Tim Sorrell

Tim Sorrell is a Planning Manager living in Nottingham. Since being diagnosed with MS he has twice run the London Marathon, with his wife Caitlin, in support of the MS Trust. He tells us why he runs and why he believes it’s important to support our work

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09 August 2016
Judy Beveridge on a tandem

Judy Beveridge is 45 and has secondary progressive MS, which makes it hard to stay as active as she would like. But discovering tandem cycling last year has given her a whole new way to stay fit.

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09 August 2016
Kadeena Cox, para-athlete

Since being diagnosed with MS in 2014, Kadeena Cox has become a successful para-athlete, competing on the track and also on bike, and is part of Team GB going to the Paralympics in Rio in September

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06 May 2016
Taking control

Life can be unpredictable, and having a long-term health condition brings with it even more uncertainties. As an ex-palliative nurse, and as someone living with a neurological condition herself, Diane Shenton knows this more than most. Here she explains how she found reassurance in taking control and proactively planning for her future

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06 May 2016

People with MS aren’t always aware that palliative care might be available for them, and so are missing out on care that could make a real difference to their quality of life.

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06 May 2016
Megan Cass - Small idea that grew

For the past six years, MS Trust supporters have been opening their gardens and holding outdoor events to raise funds as part of our summer My Garden Party campaign. 12-year-old Megan Cass tells us about the garden party she held to support families like hers that are affected by MS, and why she’ll be doing the same again this summer.

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06 May 2016
15 minutes with Amy Mackelden

Amy Mackelden writes plays, poetry and pop criticism. Her most recent book is Adele: the other side, published by Eyewear Press. She was diagnosed with MS in 2014 and this year volunteered to join the advisory group of our MS Forward View project. Here she explains why she got involved and what inspires her

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05 May 2016
Steph sitting chatting with her occupational therapist

Steph is a music and performing arts manager at an FE college. She was diagnosed with MS in 2008. Here she talks about how Gilly Burdon, an MS specialist occupational therapist, helped her.

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05 May 2016
Mags Lewis

Mags Lewis was diagnosed with MS in 1994. After a career as a manager in the NHS, she’s now the Green Party disability spokesperson, and hopes to stand as the party’s candidate for Leicester at the next general election. She tells Open Door why she thinks it’s important for people with MS to get involved and make a difference.

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05 May 2016
Gilly and Steph

Occupational therapists (OTs) can help people overcome everyday difficulties and stay independent for longer. However MS specialist OTs are still rare in the UK. We spoke to Gilly Burdon, an MS specialist OT working for Wye Valley NHS Trust in Hereford, about her work, the difference she makes, and how she’s supported by the MS Trust

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11 February 2016
Plane in field

At the age of 62 and living with MS, Judi Hall decided she wanted to seize every opportunity for adventure. This prompted her to sign up for a sponsored skydive as part of our Jump in June campaign last summer. In this article she tells us all about her jump and the inspiration behind it.

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09 February 2016
Let's make MS care fair logo and team

MS care is changing. Last year saw a new consensus on treatment for people with relapsing remitting MS. This recommends that people with relapsing remitting MS receive treatment with a disease modifying drug (DMD) as close as possible to diagnosis. It also recommends that treatment should be closely monitored, and, if there are still signs of disease activity, a switch to a different, more effective treatment should be considered.

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09 February 2016
The Tayside MS team, based at Ninewells Hospital in Dundee

The Tayside MS team, based at Ninewells Hospital in Dundee, were the inaugural winners of our QuDos award for multidisciplinary team of the year. The MS nurses have also worked closely with the MS Trust over the past two years as part of our GEMSS project, collecting data about their service. We think their service offers a great model for effective and equitable MS care, so we went up to Dundee to find out more about the team and how they make a difference for people with MS

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09 February 2016
Aqua therapy

The winner of the evidence in practice award at our QuDos awards last November was the MS Aqua Research Team, comprising academics from the University of Brighton and physiotherapists at the Burrswood Hospital in Kent. We spoke to the team about their work and what it means for people with MS

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06 November 2015
Getting the balance right

Neurologist Dr Paul Molyneux and MS specialist nurse Ruth Stross both sat on the editorial panel for MS Decisions. Here they explain why they got involved and how they believe it will help them help people with MS.

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05 November 2015
MS Decisions: Getting involved

Karen McTaggart and David Harrison were both diagnosed with MS in 2014, and volunteered to help us review MS Decisions. Here they tell us why they got involved and how they helped.

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05 November 2015
London to Paris official charity

The MS Trust has a fantastic opportunity to raise funds next year as we have been named the official charity partner for the special Tour de France edition London to Paris cycle ride! We are looking for 50 cyclists to join our team and raise sponsorship to help us support people with MS.

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05 November 2015
Trigeminal nerve

Trigeminal neuralgia is a type of severe nerve pain which can be a symptom of MS. Professor Joanna Zakrzewska, a specialist in facial pain at the Eastman Dental Hospital in London, explains what causes it and how it can be treated.

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05 November 2015
Choosing a disease  modifying drug:  Anna's story

Anna is 29 and was diagnosed with relapsing remitting MS in 2012. She has been taking Avonex, but is now reconsidering her options. She volunteered to test drive the new MS Decisions and was very impressed.

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04 November 2015
MS Decisions logo

We’ve worked closely with people with MS, MS nurses and neurologists to develop the new MS Decisions. The site now features a guide to making your decision, full details about all of the drugs, a list of common questions, as well the decision aid.

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10 August 2015
Vicky Edwards

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, it was also a great opportunity to support her favourite charity.

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10 August 2015

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

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10 August 2015

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

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10 August 2015

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

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10 August 2015

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.

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10 August 2015
Weighted wrist band

Ataxia is a lack of muscle coordination anywhere in the body, which leads to tremors and can affect speech and swallowing. There are practical steps you can take to reduce the impact that ataxia and tremor have on you.

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11 May 2015

The issue of vaccinations and multiple sclerosis raises a number of questions for people with MS. Are the treatments safe? Do they work in MS? Are they affected by other treatments? Here we look at some of the more frequently asked questions.

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11 May 2015
A-Z of fundraising ideas

Did you know that we received £1.1 million last year from people like you raising funds and donating?  That's equivalent to what we spent in the same year providing information, campaigning on the things that matter to people living with MS and funding research to improve services, treatment and support.

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11 May 2015

Tracy Nicholson is the Research Manager at the MS Trust. She was diagnosed with MS in 2000. To celebrate their 50th birthdays, she and her friend Katrina decided to do a cycle, trek and kayak adventure in North Vietnam to raise funds for the MS Trust.

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11 May 2015

Dr Jeremy Chataway is a consultant neurologist at the National Hospital for Neurology and Neurosurgery in London and has been involved in MS research for many years, most recently into the effects of simvastatin on progressive MS. He’s now leading on the MS-SMART trial, looking at the effects of three drugs which are already used for other conditions on people with secondary progressive MS. The trial is recruiting throughout 2015.

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11 May 2015

There have recently been encouraging developments in understanding and treating progressive MS. In this issue of Open Door we report on MS Trust research into the experience of transition between relapsing and secondary progressive MS and hear from Dr Jeremy Chataway on his research into the effects of three drugs on people with secondary progressive MS. To introduce the feature, Professor Alan Thompson, who is co-chair of team that coordinates the International Progressive MS Alliance’s research programme, explains how the focus has changed.

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23 February 2015
MS nurse talking to person with MS

There are over 100,000 people living with MS in the UK today. But MS Trust research shows that there is a shortage of MS specialist nurses and an urgent need to raise the profile of the physiotherapists and occupational therapists with special expertise in MS. Amy Bowen, Director of Service Development at the MS Trust, explains why we’re working to put MS specialists at the heart of MS care and why we need your support

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23 February 2015

Emma Rogan was diagnosed with MS in 2007 and since then has worked tirelessly to raise awareness of the issues that affect people with MS. In 2012 she entered the Vodafone World of Difference competition and worked with MS Ireland on advocacy, policy and information. She now works for the European MS Platform, and is leading their Believe and Achieve campaign, creating paid internship opportunities for young people with MS through partnerships with businesses across Europe

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20 February 2015
Nurse and patient - heart of MS care

At the MS Trust, we believe that people living with MS deserve the best possible care. That’s why we’re launching a new campaign to make sure everyone affected by MS can get access to MS specialists (that is, specialist nurses, as well as physiotherapists, occupational therapists and other health professionals with expertise in MS).

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13 November 2014

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

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11 August 2014

As I write I’m preparing for Glastonbury 2014. This will be my twelfth time at the most famous music festival in the world. As a 19-year-old student in 1993, bumbling along to something I’d barely heard of with a ticket I’d bought the week before, I had no idea what I was getting myself into. 

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11 August 2014

Amelia Southard is a writer and blogger who lives in Devon. She was diagnosed with MS in 2002. Earlier this year she took part in the MS Trust Continence Question Time, a series of short videos looking at some common MS bowel and bladder problems.

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11 August 2014

There really isn’t anything better than live performance. Many of us are in our 20s-30s when we get our diagnosis, and, speaking personally, I was right in the sweet spot of my musical fanaticism. I’m 40 now and I was diagnosed with MS around 10 years ago. I’ve continued to attend gigs, and occasionally play in them too. Like many things which people with any form of disability do, they invariably require a certain level of planning. I’m also more selective about the gigs I go to, but I think that’s mostly to do with having a three-yearold daughter rather than a decrease in mobility.

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07 August 2014

We’re constantly inspired by the amazing work of our community fundraisers. Now some of you are joining together to make supporting the MS Trust even more fun, more social and more effective. Donna from our fundraising team introduces the new Friends of the MS Trust groups.

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16 May 2014
Illustration of rehabilitation team

Rehab professionals can help you work out ways of dealing with some of the common problems MS can cause and support you to draw up practical goals for living the way you want to. On these pages some of the UK’s leading experts talk about how MS rehab has changed over the years and how it can help you today

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16 May 2014
Illustration of rehabilitation team

This June the MS Trust is bringing RIMS, Europe’s largest conference on MS rehabilitation, to the UK for the first time. We hope this will be a big step towards better rehab services for everyone affected by MS. But what exactly is MS rehab? In this special feature we speak to health professionals and people with MS to find out how it could work for you.

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16 May 2014
Illustration of rehabilitation team

MS rehab services vary depending on where you live. If you have an MS nurse, they are often the best people to ask what’s available locally. If you have an MS therapy centre near you they might also be able to help you find a physiotherapist or other rehab professionals. You might need a referral from your GP to access some of these services.

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16 May 2014

The MS Therapy Centre in Norwich, like many therapy centres around the UK, offers a range of rehab services that could support you to continue living a full, active life. Wendy Hendrie works at the centre as an MS Specialist Physiotherapist. Here she explains exactly what practical support she can offer and the difference it can make.

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16 May 2014
Illustration of rehabilitation team

I am 67 years old and I have had MS for over 30 years. I live with my husband who is nearly 80. Thankfully he is fit and well and between us we manage most things. He does the cooking and housework but I help with the dusting. I have been in a wheelchair for many years but can stand on a turning aid, with my husband’s help, to go to the toilet or get into bed or the car. However, my standing had been getting much worse and moving me from one place to another was getting very difficult for my husband.

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16 May 2014
Bladder problems are a common symptom of MS

Around 75 per cent of people with MS experience bladder problems and these can have a big impact on your everyday life. However it is often possible to treat these and simple management strategies can make a real difference.

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16 May 2014

As this edition of Open Door hits your doormat the preliminary results of the Department of Health Risk-sharing Scheme (RSS) will have been presented at the Association of British Neurologists meeting, and by the next edition we hope the full results will have been published in the Lancet or BMJ.

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16 May 2014

MS rehab services vary depending on where you live. If you have an MS nurse, they are often the best people to ask what’s available locally. If you have an MS therapy centre near you they might also be able to help you find a physiotherapist or other rehab professionals. You might need a referral from your GP to access some of these services.

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16 May 2014

Karen Walker took part in a skydive for the MS Trust in December last year along with a group of her friends who all have MS. Here she tells us how they went from meeting on an MS course in Sheffield to climbing 13,000ft together in a light aircraft!

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20 February 2014
Flying above the toon

When Liz Hilland from Country Durham found out she had multiple sclerosis in 1999 she knew very little about it and feared it was an end to the life she knew. Since then she become involved in raising funds and awareness to help others understand more about MS and show that life goes on after diagnosis. Last year she took part in a zip slide from the Tyne Bridge as part of our Be Bold in Blue campaign.

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20 February 2014

That was the headline on the very first issue of our newsletter Open Door. Simon, who joined our information team in 2000, reports on how our service has developed in response to changing needs over the years.

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18 February 2014

Getting a handle on MS can be hard enough when you live with it yourself. But it can often be just as tricky for children and young people to understand why their mum or dad is too tired to play or why they might have to help out more at home.

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18 February 2014
healthy skeleton

MS nurses Pauline Shaw and Debbie Quinn provide tips for keeping your skeleton healthy and strong.

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13 February 2013

Vitamin D (vitamin D3) is created in the skin when exposed to ultraviolet B radiation in sunlight. In the UK, between May and September, about 20 to 30 minutes a day spent outdoors in direct sunshine in the middle of the day will meet vitamin D needs for most fair skinned people. Factors such as darker skin, the use of sunscreen, levels of pollution and the unpredictability of the British summer can all lower availability and between October and April, the level of ultraviolet is too low for vitamin D to be made.

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09 August 2012

Neuropathic or nerve pain is an invisible but debilitating symptom of multiple sclerosis.  A pain consultant writes about how this can be managed.

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01 November 2009

People with MS may face a range of legal problems as a consequence of having multiple sclerosis and it can sometimes be difficult to know whether they have any legal rights they can assert to resolve these problems. This is where the Disability Law Service can come in.

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