- Mixed results for cyclophosphamide in SPMS
- MS on TV
- Paleo diet trial results
- Review of evidence for cannabis
- Review of research in 2016
It was recently revealed that Channel 4 soap Hollyoaks will tackle an MS storyline in 2017, with Nancy Osborne set to be diagnosed with the condition. In this blog, Lydia from the MS Trust comms team highlights the importance of having people with MS on primetime TV, but also looks at the difficulties of portraying such a complex condition in a drama.
Author and MS Trust supporter Andrew Langley was diagnosed with MS after going blind with optic neuritis on the eve of his 30th birthday. In this guest blog, he talks New Year’s resolutions, coming to terms with his diagnosis and channelling his musical hero David Bowie.
- New Year's honours for people with MS
- Lifestyle impact on MS
- Living near busy roads
- Magnetic stimulation and brain activity
- Gilenya (fingolimod) in Wales
Andy and Kathy Porter made their recent holiday extra special by taking part in a sponsored skydive.
- Falls and bladder problems
- The World vs MS
- Tysabri concentrations and PML
- Ocrelizumab trial results published
- Breath test for diagnosis
Grange Park Beaver Scout group takes part in a Reindeer Rally to raise funds to help people with MS.
Sarah Brenton, a Clinical Specialist Neurological Physiotherapist, shares her experience and value in attending the MS Trust Conference 2016.
- Copaxone and pregnancy recommendations changed
- Racing driver with MS
- Disease modifying treatment in more advanced stage MS
Sue Macdonald from Shrewsbury achieved a dream when she took part in a skydive in Lancaster in aid of the MS Trust.
Heather tells us how she and her family are dealing with her recent MS diagnosis and why she has decided to take on the Bath Half Marathon.
- Sports Personality of the Year shortlist published
- Vitamin D and MS risk
- What stem cell research says about progressive MS
- Researching diet and MS
- Emerging treatments for progressive MS
Catch up on all the latest talking points from the world of MS with the new MS Trust news round-ups.
Leigh was diagnosed with rapidly-evolving relapsing-remitting multiple sclerosis in 2013. In this guest blog she tells us what it was like finding out that you have to stop one disease modifying drug and move on to another option
Christmas can be a very stressful time for many people - and when you have MS, it can effect your daily life and symptoms. Here Helena from the MS Trust Information and Engagement team explores some ideas on how to reduce Christmas stress.
World’s biggest MS conference comes to the UK and sees encouraging new progress on multiple fronts
Juggling having MS and having a small child isn't the easiest at times. For the blogger of poorlyparents it was very important to try to keep her brain as active as possible. In this guest blog she explains how she is getting on with her blog and how technology can help you to be creative.
- Use of dietary approaches to manage MS
- Brain tissue ratios and prognosis
- Exercise is valuable for people with more advanced MS
- Development of progressive MS research
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.
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.
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.
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.
In October 2016, Hasan trekked to the summmit of Mount Kilimanjaro, the tallest free-standing mountain in the world, to raise funds to support people with MS.
Sarah and Phil have set up their own festive wear day on 14 December for anyone who is at home during the day.
Melissa tells us about her family's involvement with Tae Kwon-Do and why they are holding a sponsored kick to support the MS Trust.
- Work capability assessment to be reviewed
- MS and breast cancer
- Living up north could speed up onset of MS
- ECTRIMS video highlights
- MS in the modern treatment era
- Biotin study results
- Nerves that affect postural control
Melissa tells us why she and her husband travelled 118 miles around Kent in a Nissan Cube, dressed in Halloween costumes.
- SNP backs decriminalising cannabis for medical use
- More MS nurses needed in West Yorkshire
- Tysabri (natalizumab) reduces depression in MS
- MS Society survey finds "disturbing levels" of workplace bullying
- Importance of family
Artist Becca Thomas, whose mother Rosemary recently passed away, is selling artworks in memory of her mum to help people with MS.
Bella and Charlie will be dressing as reindeer and taking part in a sponsored walk in honour of their dad Mike who has MS.
- How people with MS feel about risk
- Stress and onset of symptoms
- Lemtrada (alemtuzumab) and disability improvement
- Stress incontinence in women with MS
- Factors indicating how MS may develop
- Low dose naltrexone safety study
- Intimate relations
The MS Trust has created two relapse resources, one to support people living with MS and one for MS health professionals running relapse services.
What do early October, a church in London and Christmas cards have in common? They mark a very important event, as Claire from our fundraising team explains.
- ESA re-assessments
- NICE turns down daclizumab
- Mindfulness helps with coping
- Tysabri vs Gilenya comparison
Sleepless nights and jars of chutney from a neighbour inspired Marie to create her own cook book, which she is now using to raise funds to help others with MS.
Reports of studies presented at the ECTRIMS meeting that took place from 14-17 September 2016. Reports include research into disease modifying drugs for relapsing and progressive MS, stem cells and lifestyle factors in MS.
- MS at the Paralympics
- Gene research for progressive MS questioned
- Natural history of people on disease modifying drugs
- MPs support call for medical cannabis
- Film about footballer with MS released on DVD
- Older people with MS
- Ageing with MS
- Progressive MS research funding
- Guidelines on more than one long-term condition
- ECTRIMS round up
- How heat affects people with MS
- Paralympians with MS
- Negative attitudes to people with MS
- Tamoxifen may help myelin repair
- Genes don't suggest course of MS
- The effect of childhood MS on parents
- Review of the medical understanding of childhood MS
- Explaining MS
- Please offer me a seat
- How lifestyle factors affect MS
- Photography project focuses on MS
- Low white blood cell count and MS
- Genes and vitamin D
- Siponimod trial in secondary progressive MS
- Amiselimod trial results
- Wales lagging behind in access to treatment
- High blood pressure may be associated with MS progression
- Neurological Alliance report on neurology and primary care
- Benefits changes and eligibility for Motability
- Camping with MS
Crystal tells us about her experience of living with MS and how it has led her to rekindle a love for jewellery making.
- Using mobility scooter for days out
- New technique for stem cell transplants
- Benefits of early treatment
Many MS symptoms seem invisible to other people. This blog explores some of the reasons for this and suggests what you could do to raise awareness.
As part of our MS Forward View project, we recently convened a meeting of MS specialists, carers and people with MS to look at different models of MS care and work out what are the most important factors to consider when designing services.
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
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 and get out in the country
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
Eight friends from London took part in a 300 mile cycle to Paris in May and have raised more than £16,000 in honour of their friend who has MS.
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
- Gut microbes and MS
- Financial, personal and work related impact of MS
- Relapses following second or subsequent pregnancies
- TENS for MS spasticity
- Poetry and MS
- Assistance dog
- Coping with life's changes
Daisy Doncaster, MS Forward View project coordinator, tells us about her abseil down the tallest permanent abseil tower in the world.
Stephanie Millward talks about her diagnosis with multiple sclerosis (MS) aged 18, dealing with her symptoms then her career as a Paralympic athlete
Amelia talks about her diagnosis with multiple sclerosis (MS) two years ago at the age of 14 and how she has become more positive and optimistic for the future
- Disease modifying drugs may help people with "benign" MS
- Stephanie Millward talks about the impact of MS
- Stem cells
- Anecdotal success and research evidence
- Financial management with MS
- Communicating prognosis
- Disabled dressage rider asked to pay extra for using additional equipment
- Study highlights progressive decline for people with MS
Jane from the Information Team blogs about swallowing difficulties in MS and tips and tricks that may help you
- Developing drugs for progressive MS
- Magician on living with MS
- Vitamin D recommendation for general population
Jane from the Information Team blogs about memory difficulties in MS, how they can affect many aspects of everyday life and tips and tricks that may help
Trudi tells us about her sponsored skydive from 10,000 feet and why she wanted to raise money for the MS Trust.
Jane from the Information Team blogs about why some people with MS find that their symptoms get worse when they are cold and what can help
Being diagnosed with MS is the beginning of a long, unpredicatable journey. In Denmark, people are offered a two-week residential course on adjusting to their new life with MS. Tim Wardman went on one and reports back on what he learned.
- Overweight people more likely to develop MS
- Gut bacteria differ in people with MS
- Integrated care transforms lives of disabled people
- Lifestyle based approach to MS
- Zinbryta (daclizumab) licensed
- Effect of MS on carers
- Cause of depression as MS symptom
Lois has developed a taste for fundraising after raising £600 through a sponsored skydive to support her mum who has MS.
Penny O'Connor tells us how she raised funds and awareness through her tap dancing classes.
Jane from the Information Team blogs about why many people with MS find that their symptoms get worse when they are hot.
- Commissioning community services
- Progressive MS Alliance meeting
- New genes associated with MS
- Caroline Wyatt on her diagnosis
Jack Graves tells us how his mum's MS diagnosis has inspired his family and their friends to get on their bikes.
- Awareness of MS
- Sleep and cognition
- People affected by MS - Caroline Wyatt
- People affected by MS - Stephanie Millward
- Cerebral microbleeds
- Vitamin D
You may have seen the news today about the results of a trial in Canada on stem cell therapy. Amy Bowen from the MS Trust explains how it gets to the nub of the issues surrounding stem cell therapy for MS and why it's time for a roadmap for making the treatment safe and widely available on the NHS
Sarah was still getting to grips with her own MS diagnosis when she decided to throw a garden party to raise awareness and funds.
- Older people with MS
- Opicinumab (anti-lingo-1) trail disappointing
- Stem cell trial shows long-term benefits
Pia Reynolds, advisory group lay member for the MS Trust’s project MS Forward View, explains what it’s like to represent people with MS in this innovative project.
Reports of studies presented at the CMSC (Consortium of Multiple Sclerosis Centers) meeting that took place from 1-4 June 2016. Reports include research into drugs for MS, better understanding of symptoms and lifestyle factors.
- Fasting-mimicking diet studied
- More proactive care for sexual dysfunction encouraged
- Golfer with MS
- Gene linked to rare form of MS
Amy Bowen, the MS Trust's Director of Service Development, reports from the CMSC conference on two talks about the importance of lifestyle issues and MS
- Vitamin D in Orkney
- The effect of MS on employment
- Invisible symptoms of MS
- Young carers blog
- Fasting-mimicking diet
- A bicycle with MS
Glenda Kerney Brown has released a book of poems to raise funds for the MS Trust. Here she tells us about living with MS and her new book.
Jenny Shackleton may be afraid of heights, but that hasn't stopped her from signing up for a sponsored skydive. But in order to do the jump, she first had to take on another challenge.
- Neurological Alliance unhappy with government response to report
- Relapses and disease modifying drugs
- Progressive MS treatments review
- Vitamin D levels in Orkney
- Gut bacteria in children with MS
- Viruses and onset of MS
- Pregabalin and birth defects
- Inequalities in multiple sclerosis care
- Potential treatment for PML
- Long-term use of disease modifying drugs
- Symptoms during relapses and progression
- The potential of ocrelizumab
- AAN meeting round up
- Diet and inflammation in the brain
- Cancer risk and MS
- Mitoxantrone and cancer risk
- Carers and the Care Act
- Palliative care services patchy
Debbie Worthington tells us about her experience of taking part in the Great North Run for the first time in 2015.
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
People with MS aren’t always aware that palliative care might be available for them. Research by Marie Curie last year concluded that people with MS are missing out on care that can make a real difference to their quality of life because there is limited understanding from both health professionals and the public of what palliative care can offer, who can benefit and when the time is right time to access it.
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.
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
- Zinbryta (daclizumab) nears approval in Europe
- Ocrelizumab and progressive MS
- Too much sitting is bad for you
- Yoga or aquatic exercise help MS symptoms
- CCSVI symptoms not unique to MS
- Gilenya (fingolimod) rebound risk
- Suicide rates higher in MS
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.
Katie was diagnosed with MS in 2008. Here she tells us how Gilly Burdon, an MS specialist occupational therapist helped her.
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.
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
Gilly Burdon, an MS specialist occupational therapist, tells us why she is cycling London to Paris for the MS Trust.
- Engaging with MS services
- Vitamin D review
- Tysabri and progression study
- Review of current research
- Monitoring MS with mobile devices
- MS affects moral cognition
Having loved cycling since childhood, Justin Kendell was devastated when he found himself unable to ride due to symptoms of MS. Now he is back on his bike and planning a ride of over 1,300 miles to raise funds for the MS Trust.
MS Forward View is our project working with NHS experts, MS teams and people living with MS to shape fairer specialist services. Daisy Doncaster, the project co-ordinator, explains how we exactly we intend to make a difference, particularly for people with progressive MS
Hayley Budge from Orkney tells us about her winning Tulip necklace design, which has inspired a jewellery collection that is on sale now to raise funds for the MS Trust.
Reports of studies presented at the American Academy of Neurology meeting that took place from 15-21 April 2016. Reports include researchinto disease modifying drugs for relapsing MS, approaches to repair of nerves and risk factors for MS.
A handy guide to buying the art you want in the 2016 Secret Art Show. Get in quick when sales open at 9am on Monday!
- Medical cannabis arguments
- MS Therapy Centre visit
- The interaction of pain, depression and fatigue
- MS. A song cycle
- Small trial hints at possibility of nerve repair
- Identifying factors that increase MS risk
- Footballer with MS
- Punching sharks on the nose
- DMDs and brain atrophy
- Do Paralympians encourage or deter exercise?
- Beta interferon in children
- Myelitis and MS
- Most PIP appeals are successful
- Switching to rituximab or Gilenya from Tysabri
- The effect of other health conditions
- Rosacea and MS risk
- Finding new life in wheelchair tennis
- Holidaymakers needed
- MS in families studied
- Finding positives
- World Congress on Controversies in Neurology (CONy)
- Benefit changes withdrawn
- Gadolinium safety review
- Ibudilast fast track status
- The Budget and benefit changes
- Beta interferon and pregnancy
- Review of ACTRIMS neurology conference
- MS in East London
- Vitamin D in pregnancy
- More than one autoimmune condition and progression risk
- Small study of antidiabetic drugs
- Brain training may improve thinking
- Athlete with MS
- MS and other health conditions
Should the task of improving MS services be solely the responsibility of the NHS? Amy Bowen, Director of Service Development at the MS Trust, explains why we believe it’s vital for the MS Trust to work in co-operation with MS teams to ensure people living with MS receive the best possible care
- Recommendations for Tysabri and PML
- Neurological services in Scotland
- Pregnancy and risk of progression
- Virtual reality and balance
- Rituximab trial unsuccessful for SPMS
- Coffee and risk of MS
The publication of the Public Accounts Committee’s report on services for people with neurological conditions throws down the gauntlet to the Department of Health and NHS England.
Sometimes, as a person with MS, it can feel as though your voice isn’t being heard. This is why I was so keen to become a lay member of the MS Trust’s MS Forward View project advisory group. Any opportunity to share my opinions about and experiences of MS services, I grab, because so much of the time my opinion doesn’t seem to matter.
- Rowing from home
- Delays in MS services
- Lessons for fingolimod for progressive MS trial
- Neurological services criticised
- Medicinal cannabis campaign
- EMA guidance on PML
- Ocrelizumab approval process in the US
- Ozanimod trial results
- Disease modifying drugs and progression
- Investigating the effect of other conditions on MS
The MS Trust's Director of Fundraising and Marketing, Jo Sopala, writes about the Atlantic Lions' incredible journey taking on the ocean and taking on MS.
MS Trust supporter Jackie Middleton and her son David who is rowing the Atlantic for the MS Trust tell us what inspired them to raise funds and why they think it's so important to support our work.
- Vitamin D and onset of MS
- Measuring disease activity
- Gender differences in MS
- Trial to predict how MS will develop
- Woman with MS on bed blocking
- Sense of taste
- Smoking and nicotine
- Christian Jessen's MS connection
- Campaign launched to legalise medicinal cannabis
Julian was only 20 when he first experienced symptoms that turned out to be MS. Five years on, he shares his story.
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.
In 1999 NHS Tayside decided to appoint a neurologist with a specialist interest in MS. And at the same time they appointed a MS specialist nurse. I was appointed along with Shona Flucker, and that was when the MS unit as such developed.
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.
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
We went up to Ninewells Hospital in Dundee to find out more about MS specialist nurses Christine Whatley and Shona Flucker and how they make a difference for people with MS.
When you’re working with MS it’s hard. You can’t just think about someone’s mobility or balance, you have to be a lot more holistic. I think working in the multidisciplinary team, you learn a lot more about MS. You can link up with the occupational therapy for fatigue management, you can link up with newly diagnosed courses.
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
With under 100 miles to go until the finish line of the Talisker Whisky Atlantic Challenge, David blogs about his uncle Gary who was the inspiration behind the challenge.
After another storm hits the Atlantic Lions, their estimated arrival date in Antigua is pushed back again.
- Fingolimod for PPMS trial unsuccessful
- Arthritis treatment and MS risk
- The difficulty of claiming benefits
- Step training study
- Company pulls out of female hormone treatment
- Work and MS
- Tysabri v fingolimod
- Indicators of risk of primary progressive MS
Comparing the unpredicatbility of the ocean with the unpredicatability of MS, the Atlantic Lions reflect on the last 47 days rowing across the Atlantic Ocean.
We've been revising the information about relapses on our website to make it more comprehensive. This is an important topic and we'd really like to have your input.
Atlantic Lion Joe blogs about the final stretch of the Talisker Whiskey Atlantic Challenge as they move ever closer to Antigua. After 43 days of continuous ocean rowing the boys have to come up with new ways to keep themselves entertained.
- Phenytoin trial results
- Risk of relapse when switching treatment
- Stem cell therapy review
- Tysabri and risk of PML
- Young carer
A group of students from the Design Academy are looking at ways to support carers by designing an smartphone app.
Ginty Telfer-Wilkes has always loved trekking in the Highlands of Scotland and she's determined not to stop now that she has MS. She also has an offer for anyone who wishes to do the same.
The Atlantic Lions have now been rowing continuously for over 37 days. Five weeks of ocean rowing has taken its toll on the boys and in this blog Dr Matt gives us a medical update.
- Stem cells therapy on Panorama
- Respite services in Edinburgh
- The potential of stem cells
- Oestrogen supplement trial results
- Consultation on further changes to benefits
In short, yes it could. The recent Panorama programme focussed on people with relapsing MS, but many people are asking whether people with progressive MS could be helped too.
In this blog, Jane from the Information Team looks at some of the research so far, what’s possible now and where we might expect to see further progress in the future.
The Atlantic Lions celebrate passing the halfway point on their journey across the Atlantic Ocean by blogging about their latest fishing ventures.
In this blog, Jane from the Information Team at the MS Trust looks at the benefits of drinking more if you have MS.
With the storm about to hit, Atlantic Lion Joe blogs about how they can avoid being pushed backward towards the Canaries.
Atlantic Lion Matt blogs about a typical day on board their rowing boat Tiny Dancer.
People are too embarrassed to talk about bladder or bowel problems with health professionals and don’t know what help is available, this is the finding of new guidance from NHS England that aims to improve continence services.
Some difficult times lay ahead for our Atlantic Lions who are rowing towards a significant storm.
The boys have been warned and options have been discussed, but it is likely to mean para-anchor and an unpleasant few days.
The Atlantic Lions have now spent a total of two weeks rowing continuously across the Atlantic Ocean. As they move further west they are treated to more frequent wildlife visitors which helps to keep the boys motivated.
After 11 days at sea the Atlantic Lions are settling into the routine of life on board the boat. With some suprise visitors on day 10, spirits are high.
- NHS choir
- Fampridine and walking speed
- Work and MS symptoms
- Talking to children about MS
- Vitamin D study
2015 has been another busy year for the MS Trust. Highlights include:
- MS Decisions launched
- Information about secondary progressive MS
- Evidence for MS specialist services published
- Launch of the new look MS Trust website
- NICE quality standard for MS
- Supporting health professionals
- Your support for us
Things are looking up for the Atlantic Lions who have now spent a total of 9 days at sea. But despite the weather getting better, the Lions are now facing problems with their power supplies.
Many miles away from their families, girlfriends and roast dinners, things were looking tough for our brave Lions on Christmas day.
- Success rate in MS drug trials
- Review of the year
- Biggest 'game changer' of 2015
- Care home ratings
- Stem cell therapy
72 hours and 160 nautical miles into the Talisker Whiskey Atlantic Challenge and the Atlantic Lions share with us their first blog from the Atlantic Ocean.
Watch this fantastic footage from the Talisker Whiskey Atlantic Challenge start line featuring the Atlantic Lions who are rowing for the MS Trust.
- Brain cell death and nanoparticles
- Making the most of your life with MS in 2016 and beyond
- Sense of smell
- Woman dies after ruling to stop feeding
- Vitamin D and myelin production
- Rehabilitation research reviewed
- John Kurtzke
- National MS Society review of research 2015
Susie Twydell explains why she has set up Wheelchair World a new site to help wheelchair users plan ahead and get the most from their adventures
Syd Hausmann tells us why she was inspired to take up running to support the MS Trust and how she's using her design skills to raise funds this Christmas.
- Songs about MS
- Oestrogen supplement trial results
- Biotin and optic neuritis
- Coping with Christmas
- Disability and society
There is an increasing interest in stem cell therapy for multiple sclerosis. Perhaps you are debating whether it could be a treatment option for you either now or in the future?
In this blog, Jane from the Information Team at the MS Trust, looks at some of the issues surrounding this largely experimental treatment.
- Social care crisis
- Artists with MS
- Spending Review
- Reporting medically unfit drivers
- Tecfidera and PML
- Chocolate and fatigue
- The impact of benefit changes
- End of life judgement
MS Trust Web Editor Helena writes about why she is taking part in the 2015 Santa run for the MS Trust, and why you should join in too!
- Drug repurposing bill runs out of time
- Diet and MS - Association of UK Dietitians policy statement
- Vitamin D and atrophy
- Cancer drug fund in Wales
First-time attendee, physio Harriet Simpson tells us us what she got out of this year's MS Trust conference, and how she thinks it will make a difference to her work
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.
Linden Muirhead is the MS Trust’s Director of Information and Engagement. Over the past year she’s been managing the redevelopment of our website, which relaunched in September. Here she explains exactly how the new site will work even better and allow us to make more of a difference for people living with MS.
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.
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.
Over 40 per cent of people living with MS report experiencing problems with speech. Melissa Loucas, a speech and language therapist based in Reading, explains what help is available.
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.
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.
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.
24-30 October 2015
- EMA guidance on Tecfidera
- People affected by MS - Dave Myers
- Photographs of MS
- HIV drug for MS
- Accurately measuring fitness
- Drug repurposing bill
NICE is developing the new quality standard for MS which identifies priority areas for improving NHS MS services. Amanda Croft, the MS Trust Policy Officer, explains why we have some concerns and what we're doing about it
My name is Amy and I have registered to take part in the 2016 British 10K Run in London because one of my closest friends, Becki, has MS.
- ECTRIMS reports
- Aubagio and brain tissue loss
- Generic version of glatiramer acetate is effective
MS specialist nurse Nicki Abel answers some of your questions about choosing a disease modifying drug.
Jo Fielder, who has rapidly evolving relapsing remitting MS, shares her personal experience around choosing a disease modifying drug in this series of videos.
MS specialist nurse Debbie McMillan demonstrates how to administer some of the disease modifying drugs.
- Ocrelizumab effective in all types of MS
- Daclizumab study results
- Gilenya (fingolimod) long-term benefits
- Aubagio (teriflunomide) real world study
- Sativex in clinical practice
- Stopping smoking reduces brain atrophy
- Suicide and self harm risks higher in MS
- Tecfidera (dimethyl fumarate) follow up
- Lemtrada (alemtuzumab) five year follow up
- Tysabri (natalizumab) longer dosing
- Gilenya (fingolimod) shows no benefit in primary progressive MS
- Vitamin D levels and race
- Sun exposure and low weight delay MS onset
- Stem cell communication
- Woman of the Year award for woman with MS
- Aubagio and atrophy
- New MS centre in Stoke
Amy Bowen, our Director of Service Development, reports from ECTRIMS 2015 on what is widely expected to be the most significant MS conference for many years
Today, the MS Society publishes a consensus report on early treatment for people with relapsing remitting MS. Amy Bowen, MS Trust Director of Service Development, explains what this means for people with MS and what we're doing about it.
- Early treatment urged for relapsing MS
- Dalfampridine for vision
- Living with MS
- Athlete with MS
As we reveal a major redevelopment of our website, MS Trust's Director of Information and Engagement Linden Muirhead explains why we believe it will help us help even more people living with MS, and why we want your feedback.
Rosanna Cook shares her experiences around choosing a disease modifying drug: "Don't rush into anything, take time to weigh up the pros and cons and don’t ever feel like you are alone, there are people who can and want to help."
Kate Milne, who was diagnosed with MS in 2012, blogs about choosing a disease modifying drug: "I think anybody else facing this decision needs to look at what is important for them."
- Olympic hopeful with MS
- Potential PML vaccine being developed
- Measuring progression in trials
- NICE social care guidelines published
- New progressive MS research grants
- Disease modifying drugs review
- What affects quality of life in MS?
Last week the Scottish MS Register published its five-year report on incidence of MS in Scotland. Geraldine Mynors, Programme Manager of our GEMSS project, reports on some surprising findings.
This week the MS Trust is joining 140 other charities in support of this year’s Remember A Charity Week. Across the country charities will be promoting the importance of leaving a legacy so that their vital work can continue. Research shows that although over a third of the population say they’d happily leave a charitable gift in their Will once family and friends had been provided for, only 7% actually do.
This weekend had long been in our diaries as the first ‘proper outing’. We have been out as a crew together on the river, but never more than a couple of hours at a time and although Matt and Charlie had already spent a night on the boat, that was well within the protection of Christchurch harbour!
6 year old Josh took part in The Colour Run along with his dad Jamie and his aunty Emma. As Emma tells us, his family were very proud.
This autumn the MS Trust is launching a new, fully updated version of MS Decisions.
MS Decisions is the independent, interactive resource that helps you learn about MS disease modifying drugs, weigh up your treatment options, get more from your discussions with your MS team and make the choice that works for you.
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.
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
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
MS Forward View aims to define the development and improvement of MS specialist care
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
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
Geraldine Mynors reports on progress in our campaign to make sure everyone affected by MS can access the best possible specialist case
When Ema was diagnosed, injectable MS drugs seemed to be keeping symptoms under control. But a severe relapse made her consider more powerful treatments
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
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.
Chris Orfeur took on a gruelling 860 mile cycle race from California to Colorado and raised over £6,300 for the MS Trust.
If you’re a subscriber you’ll have seen that the new issue of our free newsletter Open Door, out this week, leads on our new resource Making Sense of MS.
The MS hug sounds quite nice – if you haven’t experienced it! Jane from the MS Trust information team explains what it is and how you can deal with it
In a recent blog, Director for Patients with Long-term Conditions at NHS England, launched a new initiative to improve bladder and bowel care for the millions of people across the UK who experience bladder and bowel problems.
Bernadette Porter is MS Consultant Nurse at the National Hospital for Neurology and Neurosurgery. This summer she was awarded an honorary MBE for services to nursing in the Queen’s birthday honours. A couple of weeks ago we had a chat with Bernadette about her work and her honour and an edited version appears in the latest edition of our newsletter Open Door. Here we publish the full version of our conversation.
Congratulations to MS Trust fundraising superstar Kenny Smith! Over the last 12 years, through countless marathons, treks and bike rides, Kenny has raised over £30,000 for the MS Trust. Five years ago he dreamed up the annual MS Circuit Challenge at Goodwood, which this year is on course to raise over £15,000. And last weekend he and a crew of dedicated friends pedalled over 23 miles in a Robin Reliant and raised another £1000! Below Kenny tells about the day.
In September 2015 Tony King from Dorset, who was diagnosed with MS in 2010, will be taking part in a motorcycle tour over the Tibetan plateau. He hopes to achieve a lifelong dream by riding to Everest Base Camp.
There are just six weeks left to enter and make your nominations for the first ever QuDos in MS awards – the awards that highlight innovation and excellence in MS services.
Debbie Worthington tells us how taking on a challenge to run 500km this year with her husband in aid of the MS Trust has helped her come to terms with her own MS diagnosis.
If you receive our newsletter Open Door you’ll know that this year is the twenty-first anniversary of the MS Trust. Having looked back at the big achievement in MS care and support since we were founded in 1993, for this MS Awareness Week, which runs from 28 April–4 May we want to make sure the next 21 years see even more progress.
Carolyn Kovash came all the way from the USA to take part in the London Marathon on behalf of the MS Trust. Below is her race day report.
In 2011 I watched my son, and then in 2012 my daughter, complete the Great North Run for the first time. I stupidly cried out "I am going to do this next year!"
Inspired by a client with MS, fitness instructor and comedian Alice B took part in a sponsored swim during MS Awareness Week
Long term MS Trust fundraiser Kenny Smith wanted to do something amazing in memory of his sister Kathleen. Here is his story.
Lorna Humphreys had dreamed of doing a skydive but she never believed it would be possible due to her secondary progressive MS.
A group of 17 and 18 year old boys from Elmfield house in Harrow School scaled the three highest peaks in the UK and raised almost £6,500.
Helen Amos and her husband opened their garden to raise funds for the MS Trust and invited neighbours from their Northamptonshire village
Mike Laver has completed six Monster Ski challenges and has raised in excess of £30,000 for The MS Trust. He shares his fundraising secrets here.
Mags Tyekiff and her daughter Polly Tyekiff (pictured right) took part in our China Trek from 5 to 14 September 2013, raising just over £8,000 to help us support people with MS. Mags, who has MS herself, shares her daily diary below.
Father and daughter Keith and Hannah Entwisle from Letchworth Garden City took part in the 3 Cities Cycle Ride in May 2013, in support of the Multiple Sclerosis Trust.
Richard Gleadhill decided to take part in the 2008 London to Paris cycle ride after reading about it in our Open Door newsletter.
23 year old Hayley Budge and her friend Sarah Jessen, both from Orkney, took part in our Iceland Trek in July 2014 after Hayley was diagnosed with MS. Here she tells us all about trekking through Iceland's magical landscape.
My amazing journey to the summit of the highest free standing mountain in the world!
Ruth Cooper trekked in Peru with her partner Clem and 16 other MS Trust trekkers in September 2007. She kept a blog for her friends and family to read, which she's kindly allowed us to share below.
Mel Plehov was the first person to take part in the 3 Cities Cycle Ride (from London to Brussels via Amsterdam) in support of the MS Trust. We asked her why she had chosen to support us in this way.
Rick Halsall has raised almost £70,000 for the MS Trust since 2008 by taking part in various events across the globe. Here he tells us more about his experiences and about his motivation for fundraising.
Philip Stringer will be cycling the 300 miles from London to Paris in August/September 2011 for the third time at the age of 75! Philip has already raised over £5,000 for the MS Trust and says hopes to raise more this year for a cause that means so much to him and his family.
Stefanie Cowles tells us about the challenge she set herself to run 100 miles in 100 days in aid of the MS Trust.
Alexander Damms took part in the London to Brighton Bike Ride in support of his sister who has MS. He tells us about it.
William White has just completed an east to west cycle across Australia and has raised more than £2,100 for the MS Trust. He tells us more about the ride here
Richard Scott from Grimsby cycled with a group of friends from Newcastle to Edinburgh in April 2014. Here he tells us about the challenge and their reasons behind it.
Jennifer Cooper's Rainbow group raised £180 by holding a sponsored obstacle race as part of our Reindeer Rally campaign.
The team at SweetTree Home Care Services was Bold in Blue when they decided to help raise money and awareness for the MS Trust.
Marie Rennie contacted the MS Trust's fundraising team in March to let us know that her husband's mountain biking team, Team Grimace, had chosen to support the MS Trust with their annual ride for 2009.
A team of 24 cyclists from the pharmaceutical company Teva took part in the Etape du Dales and raised more than £3,500 for the MS Trust.
Five colleagues from Virtual PA Services in Colchester took on the Gladi8tor challenge, an 8 mile obstacle race through Thetford Forest, and raised more than £3,000 to help people with MS.
Arundel rock band The Alternatives and Burpham Village Committee have donated £1,000 to the Multiple Sclerosis Trust. The cheque was collected by MS nurses Lisa Black from Worthing and Katrina Orchard from Chichester on behalf of the MS Trust.
Kenny Smith is a longstanding supporter of the MS Trust, having amongst other things completed numerous London Marathons, trekked in the Sahara Desert and founded the MS Circuit Challenge at Goodwood. Here he tells us about his latest challenge, cycling from London to Brussels via Amsterdam in August 2014 along with his daughter Amy.
Eve Darwood is a philosophy teacher at a secondary school in Lincolnshire. Last year she was diagnosed with MS. In this blog post she explains how her job, helping young people make sense of the world, has affected how she makes sense of MS (and vice versa).
Christine Moran found that writing poetry helped her come to terms with her MS diagnosis. She's recently had a book of poems published and is donating all the profits to the MS Trust.
Mother and daughter Di and Bessie Baker took part in a sponsored skydive to raise funds to help people with MS.
Earlier this week our Director of Service Development, Amy Bowen, was asked by a national paper to comment on the issue of medicinal cannabis in MS, and in particular Sativex, a drug used to treat muscle spasticity. When published, Amy’s interview was edited down to a couple of lines in a larger article. Here she explores some of the difficult issues around cannabis use in MS in more depth
At the age of 62 and living with MS, Judi Hall decided she wanted to seize every opportunity for adventure. Here she tells us all about her sponsored skydive.
Liz Thompson is one of the MS Trust's most passionate supporters (and 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.
The media has highlighted the results of a survey published today by the MS Society about being diagnosed with multiple sclerosis. The survey raises issues about the challenges of being diagnosed with MS and the delays and mis-diagnoses that some people experience. It reflects many of the themes that came out in the MS Trust’s recent research into the experience of being diagnosed with MS.
The media has highlighted the results of a survey published today by the MS Society about being diagnosed with multiple sclerosis. The survey raises issues about the challenges of being diagnosed with MS and the delays and mis-diagnoses that some people experience. It reflects many of the themes that came out in the MS Trust’s recent research into the experience of being diagnosed with MS.
Skye McCallum organised a Prom Fashion Show at her school and involved local businesses to raise funds for the MS Trust.
MS Trust Fundraising Officer Jess Wright tells us about the Big Blue Jump which took place during MS Awareness Week and her own impromptu parachute jump.
Finding that the pattern of your MS is changing from relapsing remitting to secondary progressive can be a distressing experience. Many people report that it feels like being diagnosed with MS all over again. How can we improve the support available to people going through transition? Two years ago we commissioned a team of researchers at Cardiff University to explore people’s experiences and look at ways support could be improved. Dr Freya Davies explains what they found out.
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.
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.
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.
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.
Improving and maintaining your mental wellbeing - a consultant neuropsychologist with a special interest in MS, introduces practical steps you can take.
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.
We’re now coming to the end of MS Awareness Week and we’d like to say a huge THANK YOU to everyone who’s been involved!
The 67th annual meeting of the American Academy of Neurology took place in Washington, April 18-25. Pre-meeting media announcements created high expectations for several presentations at the meeting, particularly treatments which may promote remyelination and neuroprotection and potentially slow the build-up of disability.
We’re only one day into MS Awareness Week and already we can record it’s been a great success. Last week we set ourselves a target of reaching 1,000 sign ups to our Heart of MS Care campaign by the end of this week. As of this morning we can report that over 1,100 of you have joined us - so you’ve helped us beat our target, with four days to spare!
MS Nurse Lucy ran a marathon for the MS Trust to raise funds for the work we do to support healthcare professionals. Here she tells us why she feels it's so important.
At the MS Trust we believe that everyone with MS should have access to an MS nurse. MS specialist nurses provide clinical advice and support on most aspects of MS. They often act to co-ordinate services for people with MS, referring someone on to a doctor, therapist, or other appropriate services. Many people with MS consider them to be a lifeline but, sadly, we know this is not the case for everyone.
MS Awareness Week begins next week on Monday 27 April. This year we are working to highlight the importance of MS services – the MS nurses, physiotherapists, occupational therapists and other health professionals with specialist expertise in MS.
After meeting and falling in love with his partner Tarina who has MS nine years ago, John Post wanted to give something back for the support they have received over the years.
Snowboarder Ben Rogers and his friend Phil Draper signed up for our 2015 Monster Ski challenge because they believe that ‘life’s a game to be played, life’s a challenge to be met and life’s an opportunity to be captured’. Here Ben shares his experience of snowboarding 90,000 vertical feet in Chamonix to raise funds to support people living with MS.
MS awareness campaigner, Trishna Bharadia, who is featuring in the new BBC series People’s Strictly for Comic Relief, tells us about what it is like taking part of a big production like this when you have MS.
Helena Jidborg Alexander who works in our MS Trust Web team and is a person with MS ponders the question of raising awareness of MS
Being asked to be a participant in the first ever People’s Strictly (Come Dancing) has got to be an amazing thing for any Strictly fan. This is what happened to six lucky people recently. One of them was Trishna Bharadia who was diagnosed with MS seven years ago.
We’re delighted that Sheffield-based singer-organist John Shuttleworth is hosting a special performance in aid of the MS Trust at the London Palladium on 28 June, with special guests Chas and Dave, Toyah, Martyn Ware, Gordon Giltrap, and others to be announced. John very kindly took some time out from his busy schedule to answer a few of our questions.
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
We’ve all heard stories about miracle cures for MS; these days they often involve stem cells. Neil Scolding is the Burden Professor and Director of the Bristol Institute of Clinical Neurosciences, and he has a special interest in MS and cell therapy.
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
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).
Cooking and fatigue doesn’t always go hand in hand, finding both time and energy to cook isn’t easy. Tim writes a blog tackling the subject of cooking when your fatigue is bad.
Amy Bowen, Director of Service Development at the MS Trust, considers whether one person can ever fully represent the variety of MS experiences
Since it was launched in 2004, many people have used MS Decisions to help them choose between the self-injected drugs for relapsing remitting MS. We’re just starting on a project to redevelop the website to include the wider range of drugs now available.
We know that the government’s changes to work-related benefits are hitting people with MS hard. As you may know, as a small charity the MS Trust restricts the government policy work we do specifically to health issues. We believe that everyone with MS is entitled to a full life, even if we don’t have the capacity to work in all areas.
Whether it was a shock or largely expected, being diagnosed with MS can leave you in a bit of a whirl. Some new videos explore this.
New care standards have been unveiled by the Welsh Government, to improve standards of care throughout the NHS. They’ve gained more urgency after care scandals were reported at the Princess of Wales hospital in Bridgend and Glan Clywd hospital in Rhyl. The new, improved standards of care are collated into a Health Standards Framework, which is based around 7 quality themes.
In October 2014, Ed Bracken ran the Hong Kong Moontrekker with three friends and raised nearly £4,000 for the MS Trust.
Inspired by his mother who has MS, Chris Orfeur has decided to take part in a mammoth cycling challenge across the rugged American West to raise funds for the MS Trust. Here he tells us more about taking on the Race Across the West.
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.
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.
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
Jeffrey Gingold on the benefits of cognitive rehabilitation.
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. Dawn Langdon, Professor of Neuropsychology at Royal Holloway, University of London, looks at promising research into MS and memory.
Why do we want to cross an entire ocean in a small rowing boat? Three reasons really. First, the sense of adventure that only the high seas can bring. Second, the challenge in pushing the human body to the endurance limits. But third, and most important, to make a real difference to a charity so close to our hearts.
Amy Bowen, the MS Trust’s Director of Service Development, explains what’s missing from the NICE Clinical Guideline.
Making Sense of MS was only possible thanks to people living with MS. You filled in surveys, took part in focus groups and interviews, responded to blogs, reviewed the work in progress and raised the funds that have made the whole thing possible. You even helped us come up with a name for the whole thing!
Jane from the MS Trust information team explains how, with the help of people with MS and health professionals, we developed Making Sense of MS.
The new resource will help people get to ask the questions that matter most to them and take all the time they want to understand the answers
Yesterday we reported on our survey which found that only 12 per cent of people with MS felt they got all the information they needed when they were diagnosed. The impact of this information gap can be profound. Many people who took part in our survey told us that they felt they had to do their own research on the internet. What they found was often overwhelming, sometimes misleading and certainly not tailored for them.
Earlier this year the MS Trust carried out new research into the effects of information on people’s experience of MS diagnosis. We surveyed 500 people living with MS and asked them whether they had been given information when they were diagnosed, and how this had affected their adjustment to living with MS.
Alice Hamilton, the MS Trust’s Policy Officer, looks at a new report on public mental health services and considers what It might mean for people with MS.
In the second of her posts from MS Boston 2014, MS Trust Director of Service Development, Amy Bowen, reports on the hot topics from Day One.
On 30 August, Ben Naughton (pictured right) will be taking on his first of five events to raise money for the MS Trust. Starting with the Rubicon Half Iron Man, Ben will complete five events in just five weeks! He is also taking on the Coniston Chill Swim (5.25 miles), Marathon Row at Cross Fit HG3, London to Paris cycle ride and finishing with the Berlin Marathon on 28 September. Here Ben tells us why he is taking on these incredible challenges.
As a medical student just finishing my second year, this was all I knew about MS before my summer holiday began.
The long summer holidays of student life can be a blessing and a curse – the first few weeks may be heaven, but boredom is likely to ensue if the student has nothing to do. Fortunately my University runs a scheme which allows students to work for a charity for four weeks over the summer; the charity I chose to help was the MS Trust.
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.
Graham and Nicki Law got married in 1997. Since then they’ve discovered that they are one of only a handful of couples in the UK where both partners have MS. Here they share their story and explain how they’ve found that mindfulness can help them deal with their symptoms and support each other.
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.
When I was first diagnosed, the most frustrating thing was that I could no longer wear high heels. I was also worried I may no longer be able to drive my lovely classic car. Fortunately I was still ok to drive but the heels went to the back of the wardrobe.
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.
In the May issue of Open Door we covered pregnancy and MS. In this issue we look at some of the questions mums with MS ask about childbirth and caring for a newborn baby.
"I probably go to the match more now than I did before I had MS. And I enjoy it even more too!”
Everyone has good days and bad days but no mood lasts for ever. In Graham’s book, Feel Good, he looks at techniques for improving your mood and coping with whatever comes your way.
This study looked at how often people reported their relapses and what effect their relapses had on their health, work and relationships.
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.
Living with MS can generate lots of questions.
Being diagnosed generates the first batch.
Today is the start of World Continence Week 2014, the annual global campaign to raise awareness about incontinence issues.
Andy Porter from Chester has run the Great North Run five times in aid of the MS Trust, raising more than £5,700 to help people with MS. He reflects back on his fond memories of the world’s greatest half marathon.
We’re already getting excited about our next Secret Art Show with over 600 fantastic pieces of art to tempt you. Here Katy Dynes, one of our regular contributors, tells us why she supports the Secret Art Show.
Today is World MS Day, the only global awareness raising campaign for MS. Every year, people with MS and MS organisations around the world come together to share information about MS and to raise awareness on how it affects the lives of more than two million people around the world.
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.
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.
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
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.
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.
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.
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.
Rod McLaren is a writer and artist who was diagnosed with MS last year. Ahead of this year’s MS Trust Secret Art Show, Rod considers the challenges of depicting an ‘invisible disease’.
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!
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.
MS is most often diagnosed between the ages of 20 and 40, when many people may be thinking of having a family. In this article Janice from the MS Trust information team explains what you might have to think about if you have MS and you’re considering having a baby.
Deputy Headteacher Ed Godfrey took part in the 2014 London Marathon and raised £2,000 to support the work of the MS Trust. He was also inspired to write a poem for a school assembly, where he shares the real experience of running a marathon!
MS Trust Fundraising Officer Donna Barton accompanied a group of daring supporters taking part in a sponsored zip slide over the River Tyne on Saturday. Despite her fear of heights, Donna conquered the challenge and she tells us all about it below.
Gemma Berryman was diagnosed with MS when she was just 16 years old. Six years on, she has decided not to let her condition stop her following her dreams and she hopes to inspire other young people with MS by sharing her story here.
The voting has closed, the nominations have been counted and we can now announce that the winners of our My MS Super Team awards 2014 are Lesley Catterall and Denise Middleton, MS specialists based in Milton Keynes, and theWessex MS Therapy Centre in Warminster.
John Nicholson took part in the first ever RideLondon-Surrey 100 event last year. John shares his top tips for anyone considering taking part cycling events.
Reports of preliminary findings from a study due to be presented at the American Academy of Neurology meeting in April suggests that the contraceptive pill may be a risk factor for developing MS.
At the MS Trust we believe that everyone with MS should have access to an MS specialist nurse. We believe that MS specialist nurses are the best people to help you manage the whole range of health issues around MS.
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.
- Our GEMSS programme helps safeguard the role of an MS nurse at Northumbria NHS Trust
- The programme enters its second phase with ten new teams from around the UK
Jill Lovell has lived with MS for over 30 years and has been involved in the work of the MS Trust since the early days. Here she looks back on some of the big changes of the last 21 years.
Nicki Ward-Abel has been an MS nurse since 1997. Here she remembers how the MS Trust helped transform MS nurse training for the benefit of everyone affected by MS.
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.
Over the last 10 years Anne Thompson, whose son has MS, has been one of the MS Trust’s most dedicated fundraisers. All in all she’s raised almost £15,000 – that’s enough to pay for the writing and printing of our new guides to managing MS bowel and bladder problems.
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.
People with MS have a greater risk of developing thinning of the bones (osteoporosis). As there are often no symptoms, it may only be discovered when you break a bone in a minor accident. MS nurses Pauline Shaw and Debbie Quinn put together these tips for keeping your skeleton healthy and strong.
Georgina Goddard is the youngest member of our 2014 London Marathon team. She’s also the youngest of all the women running this year! Here she tells us why she chose to run for the MS Trust.
I wish I could give a simple answer to this question but I can’t. Strictly speaking, the answer is “No, it’s not inherited” but it isn’t quite that simple. This is the way the science goes.
The statistics for being in any kind of employment if you are disabled are grim. The government knows this and has decided, rather late in the day, to accompany its plan of reducing the benefits bill for all disabled people with some ideas to improve opportunities for getting into and staying in, work.
- What counts as disability in MS?
- How should we discuss the possibility of disability, especially with people who are newly diagnosed?
- Is “disability” the right word to use?
These are difficult questions and I find my thoughts going round in circles.
Bowel problems are common in MS but they can be difficult to talk about, so people don’t always share positive experiences.
We’d really like your help – if you’ve found ways of managing bowel problems that have really worked for you, we’d like to share them more widely in a publication we are working on.
Here at the MS Trust we’re currently working on information designed to help people with MS manage their day-to-day symptoms. The first booklets in the series will look at common bladder or bowel problems and suggest practical ways you can work together with your health professionals to deal with them simply and effectively.
For the next issue of our newsletter, Open Door, we’re going to be focusing on MS in the family. MS is typically diagnosed when people are in their twenties and thirties – that is, when many people are thinking about settling down and starting families.
With a glittering career as a chef, restaurant owner and lecturer, Jonathan Reen was in the prime of his life. Then, at the age of 46, he was diagnosed with primary progressive MS. For six months, as his symptoms got worse, he had to give up the work he loved. But now, after a period of readjustment, he’s set up Urban Chefs, a new business offering cooking lessons to people in their own homes. Here he explains how his lifelong passion for food has kept him going through the ups and downs.
Telling your nearest and dearest that you’ve just been diagnosed with MS can be tough. People’s reactions will vary from being stunned into a very long silence to wanting to wrap you in cotton wool and do everything for you.
Explaining MS to people can be really difficult at the best of times. Explaining MS to people when you are newly diagnosed is even harder.
We spoke to Steve and Cat, who trekked Kilimajaro in 2008, for their advice on preparing for the challenge
Kenny Smith, one of our most loyal supporters, is currently busy training and fundraising in preparation for his Kilimanjaro trek in October 2013. Here he shares some of his training tips.
This was my second year taking part in the MS Trust’s cycle race at Goodwood and I knocked 20 mins off my time – 2hrs 15mins to beat next year then! I support the event for several reasons and it has been great fun to attend with my family and friends. My younger brother suffers with secondary progressive MS so I like to try and do something for an MS charity each year.
Rachel Coffey-Brittain has raised more than £1,100 for the MS Trust by taking part in a sponsored skydive as part of our Jump in June campaign. As our skydiving month draws to a close, Rachel tells us about her experience and how her own MS diagnosis led her to try something new.
Diane Evans on the inappropriate and unthinking ways that some people talk to a person with multiple sclerosis and why it’s best to stop, look and listen before holding forth on MS
Fate tapped me on the shoulder in a room at the National Gallery in London’s Trafalgar Square.
It was the room where the Titians are, and, even if it sounds like Pseuds Corner in Private Eye, I was analyzing Titian’s late masterpiece “Diana and Actaon”.
Although Friday is the end of the working week, MS Awareness Week continues right through to Sunday 5 May – and Bold In Blue events will continue right through the month and beyond. So there is still plenty of time to to get involved and make a difference!
We’re very grateful to our patrons Jackie and Laurence Llewelyn-Bowen who appeared on ITV’s Lorraine show this morning, talking about MS Awareness Week. Both Jackie and Laurence’s mothers were diagnosed with MS, so they have a real understanding of the day-to-day reality of the condition.
I'd always wanted to do a triathlon, but being diagnosed with MS makes you wonder, is it something I can do? It made me question many things about my life and what the future has in store.
People with MS often experience strange sensations in the skin. They can be really hard to describe and feel downright weird.
What is it like to have fatigue (it is really awful) and how can we explain fatigue to others who have never experienced it? (almost impossible)
An MS Nurse from Sheffield who is in training for a sponsored cycle from London to Paris, has been nominated for our Super Nurse Award. This award recognises nurses who make a real difference for people with multiple sclerosis.
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.
Many people are intensely interested in what is happening in MS research. On Saturday, I was lucky enough to go to a Research Day held by Barts and The London School of Medicine and Dentistry, with UCL Partners, to hear what research they are doing and what it might mean for people with MS. This research group includes some of the top researchers in MS in the UK and they are keen to get people involved. The audience were mostly people with MS, their friends and family.
Why multiple sclerosis is classed as a life long condition and not as a terminal illness.
This is a guest Blog from Steve Woodward about how to tackle the snowy weather.
The MS Trust has an email alert which highlights research in MS published in the preceding week. How do we choose what to include? And are we getting it right?
A team in Surrey set up a psychology service offering CBT and MBCT, approaches that research has shown canhelp people adapt to and cope with living with MS. A psychologist, an MS nurse and a neuropsychologist describe these two approaches and include some of the comments made by clients who took part.
Neuropathic or nerve pain is an invisible but debilitating symptom of multiple sclerosis. A pain consultant writes about how this can be managed
The thing we were always keen to achieve with Gallop is that it should be different to the video material already out there for MSers. If shift.ms were to make a film then it we wanted to bring something different to the table that would resonate with our community and raise awareness of the challenges of the early days/years of living with MS.
Are you healthy? Pretty much? Imagine you’re standing, there, wherever you are just now – living room, office, street – and someone runs over and gives you a shove. Of course, you’re shocked. Sure, your arm might hurt a bit where they pushed you. But basically, you’re OK. Your feet are firmly planted on solid ground.
But it’s different for me and other like me: people with dreadful, crippling fatigue caused by a long term illness such as MS, CFS/ME, lupus, cancer etc.
Having a family member diagnosed with any long-term medical condition, not just multiple sclerosis, can be difficult.
Even though most people with MS don’t come from a family or lifestyle as high profile as the Osbournes, there are aspects of Jack Osbourne’s diagnosis that will be familiar to many.
Professor Helen Tremlett, looks at epidemiology (a study of disease in people) and the natural history of MS
In my day to day work I spend a lot of time of Facebook and Twitter, I post news articles and pick up on questions people might have for the MS Trust. I notice a lot of people (including myself) get very confused about drugs that are in development for MS. You see a news item about something like Sativex getting a licence, which will excite a lot of people thinking this entitles them to be able to have the treatment, but when they try to get it, they get turned down as the drug is not yet approved by the NHS.
Recent years have seen much interest in the role of diet to help people with MS with problems such as eating difficulties, weight loss and constipation. It is now accepted that diet also has a preventative role to play, minimising risk for conditions secondary to disability, such as obesity and heart disease, and helping to promote general health and well-being. Dietitian Anne Payne looks at some of the issues.
An interesting conversation started on Twitter. How do disabled folks date? The big question was about how to appeal to a potential partner. Kevin Ward sheds some light on the options.
After disclosing my MS in a pretty unabashed fashion in a national broadsheet (The Independent) last November I thought I was done with ‘coming out’ about my disease. Then this summer a BBC researcher got in touch about a series for Radio 4 and wondered whether I’d be interested in telling my story for their series.
Intrathecal baclofen (ITB) is an invasive treatment for spasticity and spasms. It used to be thought of as a last resort but more recently both health professionals and people with MS are realising it can help to keep people mobile and well without the side effects often experienced by oral medications. Dr Val Stevenson discusses the treatment and Carmel Mackey, who uses a baclofen pump, talks about how it has affected her life
Mindfulness involves learning to bring our full attention to our experience moment by moment in a kind and non-judgemental way so that we can be aware of what is really happening in our bodies, our minds and emotions and our environment. Vanessa Hope considers how the approach might help people with MS.
The Information Standard was devised by the Department of Health to allow people to judge what information is accurate, based on good evidence, up-to-date and unbiased? MS Trust publications and website pages carry this mark.
Dr George Gveric writes about the work of the UK Multiple Sclerosis Tissue Bank, which was set up to fulfil wishes of those who wanted to help MS research by donating brain and spinal cord tissue, and to provide a resource for scientists investigating various aspects of MS
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.
Report of research exploring experiences of supporting a family member with progressive MS and the transition to respite or long-stay care.
Stress is a common and sometimes unavoidable part of life, but it may be possible to control stress by changing the situation in order to limit the stressful elements or by learning to change how you react to stressful events. Psychologist Dr Gail Kinman looks at causes of stress and ways to manage it.
My story is all too familiar, six years ago I was happily married with one little girl and another baby girl due any day. Then I was diagnosed with something called MS.
A diagnosis of MS may affect how you feel about yourself and how you relate to your partner. Catherine Allen of Relate discusses ways of maintaining a fulfilling intimacy within the relationship
At last, after all the months of preparation we finally met all of our fellow trekkers at Heathrow, together with Sally and Charlotte from Skyline and the doctors on the trek - Graham and Marc - and set off on the first leg of our journey to New York's JFK airport.
Physiotherapist Lesley Furnell from Revive MS Support writes about how using horseriding to create movement can be helpful for people with multiple sclerosis.