As part of World MS Day 2018 on 30 May, Healthcare Fieldwork are recruiting people living with MS who use either a RebiSmart or Betaconnect to take part in market research. The Cambridgeshire based company are in the early stages of developing a new medical device for people to administer medication to help manage their MS. Their aim is to make all new devices safer and easier to use.
Participants will take part in an hour long interview - either at their viewing facility in Sawston, Cambridge, at home, or in suitable local venue - and will receive £80 for their time. No medication will be involved.
If you are interested in taking part please email Nicola at Healthcare Fieldwork or call 01223 855066.
If you want to take part in this year’s Prudential RideLondon-Surrey on behalf of MS-UK, you will need to sign up by next Tuesday 22 May.
The event on 29 July, which takes riders one hundred miles through the closed streets of London and into the suburbs of Surrey, promises to be an unforgettable experience for anyone lucky enough to be sat behind the handlebars!
If you would like to book your place, contact Jenny Poulter via email or calling 01206226500.
Last month, Prof Dawn Langdon wrote a post about a research study her group are carrying out, looking at how some of the ‘invisible symptoms’ of multiple sclerosis (difficulties with attention, concentration and memory) impact employment for people with MS. The study uses a new computer task (non-immersive virtual reality) which simulates an office environment.
The study has been up and running for a few weeks now and it’s been great to see that so many people with MS have been interested and keen to take part. I personally have been rather touched by the willingness of people with to participate. The study is ongoing, there is still time to take part.
One unexpected outcome is having people from our healthy control group tell us that they have learnt more about MS through completing questionnaires about employment and MS symptoms. We’ve also presented the study design to other Trainee Clinical Psychologists who equally felt that they had learnt more about MS. Perhaps in addition to finding out more about the relationship between our complex thinking skills and employment in MS, we can also raise a little bit more awareness about what people with MS experience.
We have not finished recruiting and are still looking for people with relapsing remitting multiple sclerosis to take part, so please get in touch if you are in the London area and are interested in participating. The study should take no more than two hours and involves doing the computer task, quizzes and puzzles and filling in questionnaires about employment, mood and coping.
For further details, please contact Laura Clemens, Trainee Clinical Psychologist, via email or by calling 07707 207922.
Since 2013, Chris has managed to complete 100 marathons in aid of MS-UK, racking up over 2,500 miles! What is the secret to Chris' success? We spoke to him to find out...
I ran the Virgin Money London marathon in 2013 and 2014, the London to Brighton 100km (63 miles) challenge, the 15 marathons challenge in 2015, and the 30 marathons challenge in 2017. My 100th marathon, at Betteshanger Country Park, was also in celebration of MS-UK!
When my wife Jennie was diagnosed with MS in 2011 we turned to MS-UK for help. They were brilliant. They gave Jennie access to the help and support she needed at the time and ever since. I decided to do something to support the brilliant work they do for people living with MS. Now, seeing the centre grow and the facilities develop, it feels great to have played a part.
I have run several navigational races and normally get lost which adds to the fun! During the London to Brighton challenge in 2014, a fellow runner was following my head torch to help get over a stile but missed the jump and fell over in style!
I found it easy to raise money the first time around as the 100 marathon challenge is a massive commitment that everyone is eager to see you complete. In the years that followed I have found events such as quiz and music nights really worked well. I hosted a fundraising penalty shootout which worked well too.
For my next fundraising challenge I will be taking on a 100 mile run in Dover in 2019. As 63 miles is the furthest distance I have ever run, I feel like this will be my biggest challenge yet! If you would like to donate you can visit my JustGiving page!
On 30 May, under the banner #BringingUsCloser, the global World MS Day campaign is putting multiple sclerosis (MS) research underneath the spotlight. The aim is to unite those involved in research - whether it be scientists or doctors, students or volunteers - and get them talking.
Throughout the month we'll be celebrating by talking about complementary therapies, and what better way to get to the heart of the subject than to speak to those who've sampled these therapies first hand? Whether you've experienced a positive change due to APS therapy or you have a story to share about using mindfulness to manage MS, we want to hear from you!
For one day only, our very own Sarah-Jane will be taking a break from editing our New Pathways magazine to take over our social media. If you have any questions about complementary therapies, MS research, or even the magazine itself, then make sure to put a note in your diary.
Introductions can be awkward. There are no rules to meeting someone new. Do you shake hands? Do you go in for a hug? What if you go in for a hug and they open up for a handshake and you end up doing some kind of weird, welcome dance that is neither one nor the other? Then you have to smile and laugh and pretend that the last few seconds never happened, making sure to maintain as little meaningful eye contact as possible. My palms are clammy just thinking about it.
That’s why digital introductions are so great. You can grab a keyboard and mouse and dive straight in.
My name is Callum Winterford and I’m the new Marketing Officer at MS-UK. I’ll be the charity’s new face on Facebook and twit on Twitter, spending time sharing news stories and blog posts, responding to your questions, and engaging with our amazing community. I will also be taking over the reins of the MS-UK blog, so if you fancy writing a few words for us you can drop me an email at firstname.lastname@example.org.
I’m really looking forward to being a part of the MS-UK family and getting to know our supporters. Here’s hoping that 2018 is the purplest year yet!
Around 1 in 600 people live with multiple sclerosis (MS). The symptoms vary greatly from person to person and can be unpredictable. Remap is a charity that helps people with MS and other disabilities remain more independent or do things that bring them joy and improve their lives.
Essex Central Group of Remap have helped many people such as Keith from Boreham. Keith was first diagnosed with MS aged 24 and then an enthusiastic PE teacher. Now 18 years later and having lost much of his leg strength, Keith uses a Motability converted car, scooter and crutches and stays remarkably independent working 5 days a week in teaching and enjoying family and social life. But MS was causing day-to-day compromises to his quality of life.
Keith first heard of Remap a year ago, and since then he and Remap volunteer Martin have worked together to identify and resolve some of these compromises.
Crutches when not in use seem unable to stay put, often ending up on the floor - very frustrating to their user. Martin used tiny yet powerful neodymium magnets mounted in Keith’s home and school office and fitted a steel disc to each crutch. Keith simply places his crutches so the magnets attracts the discs and they are held firmly. When he needs them again, a quick tug on each crutch releases the magnetic force and they are ready to go.
Similarly, Keith needs to take his crutches when using his scooter, especially round school. Not easy to balance on his lap and carry a bag. Martin used special roller clips mounted on scooter seat and furniture feet protectors acting as supports for the crutch feet. So now Keith carries his crutches ‘hands free’.
At Keith’s house the steep drop outside the patio doors made going outside very difficult to negotiate. Having worked out that 9 cm was the greatest step height Keith can comfortably manage, Martin built a set of 3 steps each 9 cm that allows Keith to access his garden.
Keith says “Remap adaptations undoubtedly make my day-to-day life much easier with a positive effect on my mindset. Small tweaks do make a big difference!”
Remap will put their minds and expertise to anything, however large or small, and welcome direct requests from those needing help or from parents, carers and health professionals. If you live in central Essex, you can contact Remap by calling Peter Livingstone on 01621 855354 or emailing email@example.com. Remap will visit you to work through the best solution, all work is free although donations are always welcome, and their website is www.remap.info.
Don't live in Essex? Remap are national, so you can still get in touch about what's available near you. Visit the national Remap website at www.remap.org.uk or call 01732 760209.
Every year we run our annual 'Getting to know you' survey, asking you to tell us a bit about yourself.
We do this so that we can make sure we are always providing services that really meet your needs, and so that we ensure we are reaching as many different people as possible that want multiple sclerosis information (MS) or support.
In the survey we'll be asking questions all about you - from how old you are to what MS-UK services you may have used in the past. Everything is completely anonymous, and we won't be asking you for any contact details at all.
You can take the survey online up until 5pm today - thank you for your help!
MS Awareness Week 2018 is drawing to a close – thank you so much for all your support!
Over the past few days our supporters have been making their voices heard and spreading the word of our newest national service, MS-UK Counselling.
We at MS-UK would like to thank everyone who championed our message that it’s ‘good to talk’ by sharing our posts on Facebook and Twitter, reading our blog, and opening up about life with multiple sclerosis (MS).
With your help, counsellors like Jonathan hope to be able to reach out to as many people across the UK affected by MS.
With temperatures topping a sweltering 24C, over 100 MS-UK runners managed to complete the 26.2 mile course in front of a bumper turnout. Then it was back to the QEII building in Westminster for a well-deserved massage, courtesy of volunteer physiotherapy students from the University of Essex, and a celebratory lunch with friends and family.
We at MS-UK would like to thank everyone who ran for us, their sponsors, and all our volunteers who make this event happen.
Chris Bradshaw and his dad John, otherwise known as ‘Team Bradshaw’, spoke to us about their own Virgin Money London Marathon 2018 experience running as Father and Son...
Chris: The answer is simple; I wanted to run for my father-in-law Mick Denne who has had multiple sclerosis (MS) since he was 28 and is now confined to a wheelchair.
John: I supported Chris in the Virgin Money London Marathon 2017 and I was so inspired by all the charities that I was moved to volunteer and run for MS-UK in 2018. At the tender age of 61, and having never run a marathon before, I knew I would have to start from scratch, training and gaining injuries just like all the others on the incredible marathon journey.
Chris: The support MS-UK provide for Mick and other MS sufferers is second to none and spurred me on to run the race in both 2017 and 2018.
John: The first time I met with MS-UK was in 2017 and it was like joining a new family - a family that would support me throughout my journey. I was now a member of Team Purple
We would both like to wish every member of Team Purple who ran on Sunday 22 April, including and all the staff and volunteers at MS-UK, a big thank you for an amazing day and a family memory we will never forget.
The ballot for the Virgin Money London Marathon 2019 on Sunday 29 April is now open!
Now I'm generally a glass half full kind of girl. I try to stay pretty positive. Having a chronic condition like multiple sclerosis can challenge that outlook somewhat, but I do my best. There are many things that MS stops me from doing, but it does occasionally open doors for me...literally in some cases! So here are a few positives to having MS.
I have the 'magic' blue badge. This allows me to park on double yellow lines for up to 3 hours! I know! Double yellow lines! When friends sometimes give me a lift into town and I show them where to park they often can't believe it. It is very handy. Not least because I can't walk very far so parking near where I need to be is hugely helpful. Once people realise where I can park they are keen to offer me a lift again (and I'm not complaining!) And it's free too.
This is very useful! Attractions and venues often offer a free carer ticket with proof of disability. On a trip to Madame Tussaud's this was particularly good as it was 35 quid to get in! However, my dad did 'earn' his free ticket having to help me negotiate the crowds and limited space on my mobility scooter. It still amazes me how I can sometimes appear to be nearly invisible when I'm using my scooter!
Again a handy one for busy London attractions. On both the London Eye and Madame Tussaud's there was fast track admission for me and my party as the number of people on wheels is limited and they need to arrange ramps and lifts. Even though I'm sat down it can still be energy sapping to be queuing, so it's great to be able to save my energy for the fun stuff! We even had use of our own personal lift and got to go in the VIP entrance to one of the exhibits! Theme parks often offer similar schemes.
We recently had a good experience at the O2 Academy in Leeds too. Early admission to the venue to limit queuing and get a decent unreserved seat in the balcony. It's always worth asking the question.
On a day to day level, you have to learn to prioritise what is important. If you only have a limited physical capacity then you learn what to focus that on and what not to waste your time on. Yes my condition does restrict what I can do (no more tap dancing for me!) and that can be very frustrating, but there is much that I can still do with some extra planning. And if that means the pots don't get washed til the next morning, the house isn't tidy or our clothes are a little creased, does it really matter?! I don't think so. There are more important things in life than housework!
Now don't get me wrong. I do very much wish I didn't have MS and that I could do the things I used to do. However, I am pretty content with my lot. I don't strive for the flash car, the big house or the exotic holiday. I am grateful for the roof over my head, loving family and friends and for when I have a 'better' day. I don't claim to have it completely sussed and I still have times of immense frustration, but I have generally learnt to manage my expectations and seek pleasure from the simpler things in life.
More than two million people worldwide live with MS, of which 2-3 times more are women than men, and the condition is the leading cause of neurological disability among young adults. So what is their prognosis?
'We don’t really know what an individual’s prognosis will be when we first diagnose the disease,' relates Dr. Adi Vaknin, Senior Neurologist at Hadassah Hospital Ein Kerem. 'That is because there is so much heterogeneity in outcomes.'
While 15% - 20% of MS patients do very well, 50% - 70% need strong medicines to live a quality life. It is this uncertainty that has led Dr. Vaknin to start a biobank to study clinical outcomes for newly diagnosed patients. By identifying a set of proteins (biomarkers) within an individual’s peripheral blood, Dr. Vaknin and her research team have been able to predict, for example, a patient’s response to interferon, a common treatment for MS.
The past 15 years have seen the development of some very effective MS medications. Currently, Dr. Vaknin reports, there are 10 medications available, but their effectiveness varies from person to person. 'There is also a limited time window to start treatment. If you miss that window, some of the medicines are not very effective.' she says. There are, however, 2 new medications on the market specifically designed to treat progressive MS.
One common thread in MS is the degeneration of myelin, the sheath that protects the nerve fibres. Dr. Vaknin is researching the ability of certain proteins, found in the fluid surrounding the brain, to renew damaged myelin. Being able to rebuild myelin in MS patients is only in the research stage, although she estimates that 'it will happen in the next five years.'
In the meantime, what advice does Dr. Vaknin have for those who are living with MS? She recommends 2,000 units per day of Vitamin D, particularly found to be effective in preventing the occurrence of the disease in any offspring. Dr. Vaknin also suggests exercise, a healthy diet and no smoking. She adds living a less stressful life to the list, but acknowledges that this 'is not so easy to do.'
Download MS-UK’s Disease Modifying Therapies Choices leaflet for more information about all available MS drugs.
We at MS-UK are inclined to agree. This year, inspired by the recent launch of our MS-UK Counselling service and MS Awareness Week 2018, we're praising the power of talk. We believe that the simple act of opening up to someone who'll listen can have a hugely beneficial impact on a person's wellbeing and quality of life.
We sat down with MS-UK counsellor Jonathan who told us what he finds most rewarding about being able to lend an ear to those in the MS community.
Multiple sclerosis (MS) is a physical condition of the central nervous system where a process of demyelination can create a range of physical changes in the individual. However, these changes have cognitive and emotional repercussions which can influence relationships with the self and others.
If someone has become accustomed to leading a busy independent life, living with MS can be a frustrating experience. Changes that are made as a result of circumstances rather than choice are harder to accept and there can be a helplessness about not being able to overcome them. Perhaps there is a sense of loss of the old self and anger at the new self, especially when the MS is progressive and therefore irreversible.
There is also a sense that MS can be all-encompassing and all-defining. The question is whether MS is a condition that the individual has or whether it is synonymous with their identity. If they see themselves as their MS, then how they relate to themselves is likely to be different and more difficult than it was before.
Even where there is a separation between the individual and their MS, it is possible that other people might see just their MS. If there are visible physical changes, such as difficulty walking and the use of mobility aids, these might draw attention away from the individual and focus instead on the MS. This can lead to frustrations for the individual who wants to live life beyond their MS. Family and friends might have a tendency to be overprotective to compensate for their own helplessness in not being able to change their loved one’s condition. Over engaging in the individual’s everyday needs, trying to convince them that they should give up work or suggestions that they make other changes, can feel stifling.
Changes to our internal world can influence our perception of the external world and subsequent relationships within it. If we are struggling to understand changes within ourselves, it is likely that others may also not understand these changes. The loss of independence means that there is either going to be a change of lifestyle or a greater dependence on others.
Often, where there are sacrifices to independence, those close to us can assume roles outside of the given normal. A partner, for example, might also turn into a carer. These dual roles present challenges that may compromise the original relationship. Where a partner has to assume largely a caring role, then there can sometimes be little room left for other aspects of the relationship.
The individual with MS might also want to disown their emotions and have a ‘beat it’ attitude towards their condition. Emotions that are brewing but not acknowledged might be channelled through anger towards others. Using this projection as a defence mechanism might help the individual cope with the uncertainty of their MS, and the uncomfortable and difficult feelings that it presents.
Call 01206 226500, or visit our MS-UK Counselling page.
We at MS-UK believe that giving people the opportunity to open up and talk about life with MS is just as valuable as any physical support. The simple act of listening to people’s worries and concerns – no matter how big or small they might believe them to be – can have a hugely positive impact on both mental wellbeing and quality of life.
Since launching the pilot of our counselling service in October 2017, our counsellors have reached out to over 150 people affected by multiple sclerosis (MS). But our aim is to lend an ear to even more. Over this week the vital work of the counselling team will be taking centre stage. We want to raise awareness of the service for those who need it in the MS community across the UK, discuss the many benefits of counselling, and help smash the stigma that may still surround mental health.
And you can get involved too! We’ve put together a list of five different ways you can make your voice heard during MS Awareness Week and help us spread the word of MS-UK...
1. Engage with MS-UK on social media
2. Share your own counselling experiences
There’s no shame in seeking out counselling services – 1 in 4 adults in the UK are affected by mental health issues after all – but some people are still afraid to talk. Share your own counselling stories with us using the hashtag #MSAwarenessWeek and you might inspire someone else to do the same.
3. Share info about MS-UK Counselling with your MS nurse
Does your MS nurse know about the MS-UK Counselling service? Why not talk to them and see if it’s something they might consider referring to in the future. You can also request some MS-UK Counselling leaflets by emailing our team at firstname.lastname@example.org
4. Have a chat over a cup of tea
There’s nothing better than a bit of banter over a cup of tea and Victoria sponge! Why not celebrate MS Awareness Week by getting together with friends and talking about multiple sclerosis? After all, it’s good to talk!
5. Download our MS Awareness Week resources
You can show your support for MS Awareness Week and jazz up your Facebook and Twitter profiles at the same time by downloading our MS Awareness Week resources! Check out our blog and follow the instructions to get your hands on a brand new banner.