Because we can. That’s why we run…for those that can’t. Multiple sclerosis (MS) has had a great impact on both our families. Fran’s cousin has suffered very badly for over 30 years but was only diagnosed 8 years ago, and is now effectively immobile. It’s heartbreaking to see her this way. My mum was diagnosed in 2016. We are still coming to terms with her reducing mobility; as each month passes that little bit more is taken away from her. My parents sold their lovely home last summer, which they so dearly loved, and have moved into a new home much more suitable to her needs, and without stairs! My cousin, at 38, was also diagnosed at the same time. So we took the decision to do something special and to raise funds towards helping out those close to our hearts, and many others, inflicted by this horrible disease.
We always say we’d do one. And kept saying it for years and years. Now, well past our prime and in our naughty forties, the marathon word finally became reality. No more excuses; it was time to make some serious cash for an MS charity. Fran had already secretly entered both of us into the Virgin Money London Marathon 2017 ballot, and the first I knew about it was when ‘a lucky you’ package came through the post congratulating me on my place. First time of asking as well! So with my place confirmed, MS-UK kindly gave a Gold Bond place to Fran with the plan being to run together and raise money to help those with MS. We did all sorts to raise funds including charity bucket collections, bake-offs, sweep stakes and organising quiz nights. We had fantastic support from family and friends via donations to our charity page, and as we requested, many gave a donation in lieu of our birthday and Christmas presents. Our son even asked for the same - top lad!
Training was ‘interesting’ and certainly much more time consuming and hard going than we ever predicted. The MS-UK Marathon Facebook page was so useful for tips and encouragement. It was inspiring to see how others were tackling the same challenges, supporting and encouraging each other daily. It was also, oddly enough, quite comforting to see that others found it hard going too…we weren’t alone!
The Big Day
For those of you that have already run it, you will already know the crowds are just amazing; the shouts of constant support really hits you. Literally every mile is packed with people spurring you on. You certainly won’t need those motivating iPod beats that accompanied you on your training routes, and besides, you won’t be able to hear it! The buzz and the relief you get from crossing that line makes all that hard work worth it. The time doesn’t matter, it really doesn’t. Who cares? The achievement; that’s what counts! Ride that wave, and you may even find you go faster than you planned. Fran managed a brilliant ‘Good for Age Time’, which meant…
…automatic entry next year! Wouldn’t waste that now. So despite saying we’d only run one, we are now doing it together all over again in 2018, and again for this wonderful charity. However, one massive difference stands out this time round: the weather. We had it great training up to and on the day for the London marathon in 2017; this time round it has been so pants!!! But that’ll make this years that little bit more special.
Another? Best ask us after we cross that line. Personally, I fancy a sponsored pub crawl!
You can find out more and sponsor this amazing couple on their fundraising page. Good luck guys!
Most people with MS recognise the expertise of their doctors and nurses, but somehow feel that there doesn’t seem to be enough time to cover all the things that matter to them and sometimes important things get missed. A group of people with MS and healthcare professionals are working together to improve clinic visits.
The group is called MS in the 21st Century. Many countries are represented and we learn from each other. We meet up a few times a year. We work to improve MS health care by understanding each other’s priorities and modelling partnership between people with MS and health professionals.
We have recently published a paper in a scientific journal which includes authors who have MS and also authors who are health professionals. This is a ground breaking project. The authors have discussed the priorities they have in an MS clinic visit and agreed a list of unmet needs from the viewpoints of both people with MS and health professionals. We have developed the paper jointly. As well as highlighting our different perspectives, we have also made practical recommendations. Our aim is to bridge the gaps between what people with MS and health professionals expect and provide.
We hope that the publication of this paper will be a key step towards ensuring that MS care addresses the expectations, priorities and needs of people with MS. It is vital that we work together to support people with MS to be fully engaged in managing their own condition. The paper emphasises the perspective of people with MS and how essential their involvement is in high-quality MS care.
From my own work as a neuropsychologist, I am particularly concerned to increase understanding of the psychological impact of MS, including cognition, mental health and wellbeing. We need to increase awareness of how these impacts can be recognised and successfully addressed.
Birgit Bauer, another author and a person with MS says, ‘As a person with MS, I cannot overstate the significance of this publication. I am hopeful patients everywhere and their healthcare teams will recognise the need for better communication and partnership with the ultimate goal of more effective and personalised care.’
"Unmet needs, burden of treatment, and patient engagement in multiple sclerosis: a combined perspective from the MS in the 21st Century Steering Group" is published in the peer reviewed journal, Multiple Sclerosis and Related Disorders (MSARD), and is freely available online now. DOI: 10.1016/j.msard.2017.11.013
If you are a person with MS, or are close to someone who has MS, and you are interested to help Professor Dawn Langdon’s team in their work on psychological aspects of MS, please email firstname.lastname@example.org.
I moved to London in 2016 and I wanted to get involved with and volunteer for multiple sclerosis (MS) charities.
I was diagnosed with MS in 2013 and I wanted to do something positive. I knew the Virgin Money London Marathon was around the corner, I wanted to be involved with the event. I contacted MS-UK and they were more than happy to take me on as a volunteer, I assisted the runners to make their way to the post-race reception.
Since then I have been asked to volunteer at a couple of other events, cheering on the participants for events such as the Royal Parks Half and RideLondon.
The MS-UK team are great and very welcoming, it gives me a chance to do something positive and meet new people.
Now in 2018, I have signed up to run for them in the Virgin Money London Marathon, I was even asked to do a little talk about my marathon experiences.
I would highly recommend joining their volunteer team!
This time last year I was getting ready for my first ‘Virtuosity in aid of MS-UK’ gig, which took place on 11 June 2017. It was a small but appreciative crowd that came along to enjoy a night of jazz at the Colchester Arts Centre, and this year I am planning on hosting a similar event, this time pulling in some blues favourites.
As a client of MS-UK, I know the good that the charity does to support people like me living with multiple sclerosis. I know the power of music to unite people and do good. I was a musician myself, so the worst effect of having MS is that I can no longer play any instruments. This is hard to accept, but I am determined to channel it into something positive and to keep my love of music alive. That’s where the idea for ‘Virtuosity’ came from.
The choice of musicians for this Virtuosity event was based on getting an international artist supported by a major local band and soloist so that the local acts would attract bums on seats for the main feature.
Geoff Achison and the Souldiggers just happened to be on tour in the UK at Easter and I know of them because of a Facebook link from Sam Kelly (the drummer of the Souldiggers). Sam is a professional session drummer and plays at West London jam sessions (when not on tour himself), where I used to go to play bass guitar when working as a software contractor there - until MS took away the control of my hands!
The genre was chosen by Geoff’s style of souly/blues/roots music. ‘It is blues Jim - but not as you may know it!’ - is a comment from Geoff’s web site which sums it up perfectly. I hope this will make it much more popular with the audience than pure jazz but still add that special touch created when playing excellent original material with such talented session musicians.
The support artists - of which there are many excellent ones in this part of the UK - were chosen from my past experience of playing blues based music around Essex. Tim Aves and Wolfpack are legends locally and the addition of the incredibly talented Martin McNeill on vocals, slide guitar and harmonica completes the line-up.
I have been overwhelmed with the support I’ve received from the local community. Colchester Arts Centre has once again hosted the event, and media students from the Colchester Institute are even coming along to record and edit the performance. I’m hoping it’s a brilliant night for everyone involved.
There are still tickets available for the gig, which is happening this Saturday 31 March...you can buy them online from the Colchester Arts Centre website. I hope to see you there!
My team mate Paul Reynolds and I decided to compete in this year’s Devizes to Westminster International Canoe Race to raise awareness and funds for two charities, one of which is MS-UK. We are team Forget Me Not! We both have friends and family living with multiple sclerosis (MS), so we have seen first-hand the challenges it can bring to someone’s life and that is why we decided to set our very own challenge. We will be paddling 125 miles in a Canadian Canoe or C2, while portaging 77 times over the Easter weekend, from Devizes in Wiltshire to Westminster Bridge in London. It seemed like the perfect challenge to help us raise money for and awareness of MS.
The Devizes to Westminster International Canoe Race has been held annually over the Easter weekend since 1948 and this year is its 70th anniversary.
The first 52 miles are along the Kennet and Avon Canal to Reading, followed by 55 miles along the River Thames to Teddington. The final 17 mile section is on the tidal portion of the Thames. The race is a severe test of skill, physical and mental stamina and planning, with the unpredictable British weather adding a further challenge.
We’ve been doing lots of training and I will say that rolling an open C2 into the freezing River Thames as part of our capsize drill, when you’re nice and warm wearing your multiple layers, does take your breath away!
Our target is to raise £10,000, so if you would like to donate to our efforts please visit our Team Forget me Not for MS-UK fundraising page.
Hi, my name is Matt. I’m 23 years old, I live in Marlborough, Wiltshire and I am working for the year as a Teaching Assistant and Sports Coach at St Francis Prep school, Pewsey, before I head back to the University of Gloucestershire in September to complete a ‘PGCE in Primary Education’.
I originally started my fundraising for MS charities back when I was just 17 years old by doing the Reading Half Marathon. Then I decided to really try all I could to make a difference to the lives of people who live with multiple sclerosis and pushed myself to get a place on behalf of MS-UK to run in the 2014 Virgin Money London Marathon.
When I found out that I was able to run for MS-UK I was absolutely overwhelmed with excitement and pride; as I knew even then what great work MS-UK did and the difference they made to those around the UK suffering with both RR and PPMS.
Although I was undeniably nervous at the task I had set myself and challenge I had ahead of me, I knew that compared to the struggle that those suffering from MS go through day-in, day-out, I now had an opportunity to do what I could to help.
The main reason that I have such a strong interest and passion for trying to help those who suffer from MS is because it is a disease that personally affected my family.
‘Ten years ago my mum, Lorraine, was diagnosed was Primary Progressive MS. However, where in the depths of such a horrible revelation it would be easy for a person to bow down to a disease and to think that their race had been run, my mum decided to stand strong and fight PPMS head on.’
My mum is a true inspiration for me and my family, and is constantly looking for a cure or new research that could help her win this fight once and for all. Whether its researching non-biased information and advice on how to deal with Primary Progressive MS; using a hyperbaric oxygen chamber to aid in recovery; or just this year making a trip over to Serbia to ‘SwissMedica Clinic’ to undergo stem cell treatment as the next step in her fight to recovery.
‘Ten years on and my mum is still fighting.’
Having seen first-hand the struggle that those suffering from PPMS go through, I am inspired every single day by my mum and strive to do whatever I can to help in her and the thousands of others in her situation to beat this disease.
‘The reason that I continue to fundraise for MS-UK is because I know first-hand the difference that their support can make to those living with MS, and whilst much progress has been made in combating the disease, there is still a way to go.’
A real highlight in my fundraising career, which showed just how generous people can be to one another, was during my third year of university. I was the University of Gloucestershire 1st XI Men’s Hockey Captain as well as the ‘Charity and Community Engagement Officer’. I decided that we could use our last league hockey match of the season as an opportunity to raise money for a cause we held dear, as well as leaving a legacy behind to future years of fundraising and charity work throughout the university.
And so I got in touch with Swansea University and pitched the idea. I was overwhelmed by the response from them and their supporters as well as other clubs at our university that came to watch the game; people who I didn’t know, who had now found this common ground with of ‘wanting to make a difference to people’s lives’. And so we managed to raises around £500 that was then split between MS-UK and Meningitis Trust Foundation on the day.
‘It really proved to me that people who different walks of life can come together a make a positive difference.’
So, what is my latest challenge? Well, I had hoped it would be the Bath Half Marathon this February…however, the weather had other ideas! It was such a shame that the event was cancelled, but I really wanted to earn the generous donations on my fundraising page, so I organised a 25k run at Marlborough Fitness and Performance Centre (MFPC), my local gym.
On 11 March I finished the run in 1hour 56mins which I was very pleased with and EVEN more pleasingly I managed to smash my target of raising £500 and so far have raised £1,198!!!!!
Thank you to every single person who has sponsored me, you have helped me make a real difference supporting MS-UK!
‘Doing a skydive has always been the top of my bucket list, so when I finally built up the nerve, doing it for charity really was a no brainer. Being able to have this amazing experience and raise money for a great cause…how amazing!
‘I knew straight away I wanted the money to go to a multiple sclerosis (MS) charity and after doing some research MS-UK really stood out to me.
‘My Gramps suffered with MS for a long time and my only memories of him are in a wheelchair but he always had a smile on his face. The care he received was always great so I am so pleased to be able to contribute to help other people.
‘I am so overwhelmed by how much I have raised so far and am desperate to reach £1,000 by the time it comes to my jump! I’m excited about it now but when it comes down to it I think I might have to be pushed out of the plane!!
We are really pleased to say Laura has smashed her £1,000 target, but you can still donate on her JustGiving page today!
Your donations help MS-UK support even more people affected by multiple sclerosisto really make the most of today and live life to the full. Thank you!
The Beast from the East has arrived! I’m recovering from a relapse (MS for sh&t!) where my mobility has been challenged, I’ve fallen several times (last time at the cinema whilst moving to let someone pass, think I deserve an Oscar for my performance!) and experiencing tons of fatigue (if I got paid to sleep, I’d be rich) so my writing is on the back burner.
I was inspired to write about how the weather affects those like me. It’s been on my mind. I have thought how reduced energy levels and mobility doesn’t wash with this weather, how limited I am but more importantly how I have to think differently and be more prepared.
The weather presents many challenges. If you flick on the TV, there are shots of the level of snow, schools closed, difficulty travelling, travel disruption and forecasts for how long we are to expect this harsh winter weather. And it doesn’t help with a storm on the way. Many other countries experience snow. They are prepared. Ours grinds to a halt, although in its defence, this harsh weather is the worst I’ve seen for a while. Little man loves the white stuff. So here are my tips for handling bad weather for those in my boat, or anyone really.
You’ll probably stay in at home. For little man, I stock up on craft kits, board games, films for indoor fun ( I can recommend Peppa’s Cold Winter Day and Peanuts movie for little man and it doesn’t drive me nuts) and books. Reading to little man is a great time filler. Ask others to buy children’s magazines if you’ve not got any in. They usually have stories, colouring and sticker fun.
When travelling, I make sure I have food, drink, toilet stuff (she wee/incontinence pads, travel potty, toilet roll, baby wipes, carrier bag to put things in, gross but true!) things to entertain little man, warm clothes and a blanket. We’ve been putting a little man’s blanket on the radiator to place on him during car journeys.
My mobility is bad and I’ve fallen a few times. The safest option is staying at home but it isn’t always viable. Slippy snow and ice isn’t great for anyone but when you have fallen and use a walking stick (doesn’t work well in snow!) this weather is super scary. I wear shoes I know that can help and am buying shoe grips.
Don’t put pressure on yourself
It’s OK to feel like you can’t be bothered. But little man is so excited. He’s seen snow before but not on this scale. I close my eyes and little man wakes me by shouting “kick a ball” or “go outside Mummy”. My husband says he’ll stick me on a sledge! (I’m thinking about weight restrictions!) It’s heart breaking when you have little energy to lift your bum off the sofa, let alone play in the snow. Give yourself a break, if you can. I’m saving energy for the weekend as my husband says he’ll be my chaperone. I’ve realised that asking for help is not a sign of weakness – so family and friends have had fun in the snow with little man, giving me a chance to recharge. I think they like it!
Protect your mind
Asking for help helps you to rest but there is the realisation that you can’t play in the snow like yesteryear. Emotions come to a head. Grief. Anger. Frustration. Envy. Social media has a lot to answer for that. Don’t get me wrong it’s lovely to see what others are doing on their snowy days but it’s a reminder that you have limited mobility. I’ve cried a lot over the last few days because I want to be the one to play in the snow with little man. I will go out at the weekend with my husband around. In the interim, try not to be alone, hook up with others whether it’s friends who can come to you (I organised a play date today), speaking to social media contacts ( I asked my local MS Society group for best shoe grips recommendations) and plan for brighter days ( I’m thinking of summer holidays).
Be more hygge
In the interim, snuggle down, grab a blanket, hot chocolate and biscuits may not be great for the waist line but I’m still scoffing and watch films. Be like a Dane until the bad weather goes away.
Stay safe everyone! I’d love to know your tips?
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March sees the first day of spring, but in the UK it can often still feel like winter! The dark, cold months at the beginning of the year can have an impact on our energy levels, immune system and cognitive function, so the start of spring is the perfect time to shake off the winter with a nutrient spring clean.
Dr Carrie Ruxton, from the Health and Food Supplements Information Service (HSIS), says: “We can’t magic up more sunlight in the UK but there are ways we can adapt our diets to get our health back on track for the spring and summer.
My five tips are;
HSIS (the Health and Food Supplements Information Service) is a communication service providing accurate and balanced information on vitamins, minerals and other food supplements to the media and to health professionals working in the field of diet and nutrition.
Multiple sclerosis and diet and nutrition
Find out more about diet and nutrition in our Choices leaflet on our website.
In her new guest blog Chloe Metson talks of dealing with depression...
People often ask how I cope with having MS, and truth be told, it’s rarely the MS that is the problem. Of course, living with relapsing remitting MS can be extremely tough, what with it’s up and downs, but no, the thing I find hardest about living with MS is the depression.
MS and depression go hand in hand for a lot of patients. Whether it is caused from living with a highly stressful situation, or actually physically caused by the MS itself, for me it’s undoubtedly the most difficult thing to cope with. It consumes me, and I become a shadow of my former self. Usually happy-go-lucky, this change is particularly hard for family and friends.
If you’re lucky enough to have never experienced depression, let me try and explain what it feels like.
Depression is darkness and fear that is targeting you as a person, and as far as you’re concerned, no-one else. It becomes sort of a cloak that others can’t penetrate and you feel it protects you from others. It completely numbs you in such a way that the only emotions you are capable to feeling are the horrible ones, and the only thing that alleviates it is sleep when you can get a break from the aggression going on in your head.
I’ve been at that point where all hope is lost, because it takes over and consumes you, and it’s the hardest thing I have ever dealt with. It felt so tempting to take the option to give up on things completely, because it was so utterly exhausting having to battle it. But I fought on and came through the other side.
I’ve been living with MS and depression for 16 years now. I believe I’m over the worst of it as I have no trouble in focusing on the future and the positives of my life, thank goodness. MS throws up it’s challenges, but at least I feel like I can cope with them now. But how did I reach this point? Firstly I learnt to be kind to myself. I took the time to rest if I could, and did nice things for myself, even if they were only small. I stopped beating myself up over negative thoughts. Depression is an illness and it deserves the respect of one. If you had a broken leg you wouldn’t be reckless and run around on it, so I learnt to respect my mind and give it the space it deserves. I tried to focus on the positives and the little sparks of happiness in life. Most importantly I’ve been trying to talk about it, and accept help whenever I can, however hard that may be.
There is such a stigma in our society towards mental illness. Perhaps if we were less unsympathetic and ignorant towards it, it would give a sufferer more breathing space and the encouragement to find the strength to battle it and allow their true selves to ignite again. Depression can be fought, and you can win the war. I’m living proof that however bad things may seem, if you are patient, there can always be light at the end of the tunnel.
If you need to talk to someone please contact our Helpline either on 0800 783 0518, or via our Live Web Chat service.