Next week will mark MS Awareness Week 2019. This year we’re very excited to be working alongside the MS Trust and the National MS Therapy Centres to raise awareness of the benefits of exercise.
We have developed a free booklet all about exercise which includes some seated exercises to help you get started. We hope you find this useful and it includes first-hand quotes from other people who have been in your position - people who can truly understand and empathise with your feelings about exercise.
The MS-UK Helpline team
Way back in 2016 MS-UK hosted a team from the School of Sport Rehabilitation and Exercise Sciences from the University of Essex here at our headquarters.
The team were running a trial testing the use of an Xbox game specifically designed to support people living with multiple sclerosis (MS). Since then, they have been working hard to continue exploring possibilities in this area, and yesterday I had the privilege of being invited to the MS Olympix at the University of Essex.
The day included taking part in three different games that could be played standing up or sitting down.
Sarah, who was first diagnosed with relapsing-remitting MS in 2007, attended the event...
‘After hearing about the day at a Josephs Court social coffee morning, it sounded really interesting. It is really good fun and some of the games – especially the ones that involve lifting my feet up – really helps my balance and coordination. It’s like playing the Wii at home but more fun!’
Sarah added, ‘the system comes from a background of rehabilitation, so I’d love to see it developed so people like me, living with MS, can use it at home’.
A big thank you to the team for inviting me to join in and we will keep everyone posted on future studies in exergaming!
Laura May, Communications Manager
My cousin, Kevin was diagnosed with primary progressive multiple sclerosis (MS) in 2006. Kev was more like an older brother to me, he was someone to look up to and get into mischief with. Being two years older he always looked out for me and I got to wear his hand-me-down clothes - luckily I wasn’t much of a girly girl!
We were all shocked by his diagnosis; his initial complaint of optic neuritis hadn’t prepared us for what was to come. As a nurse I was aware of MS but more familiar with the relapse remitting form. His deterioration in health was rapid and devastating, for Kev and for all who loved him. Despite the many challenges he faced however, he never lost his sense of humour. He was truly a funny, humble and very loveable man.
Kev passed away last year, two days after his 46th birthday. I wanted to do something meaningful to help make sense of everything Kev went through, to remember him in a positive way and to help other families affected by MS. I feel very lucky to have the opportunity to run the London Marathon in his memory and I am looking forward to raising as much money as I possibly can for MS-UK.
I have two young daughters so when it came to fundraising I quickly realised that any fundraising activities were most likely going to involve them. Luckily they are involved in several clubs which have provided great links for raffles and donations.
My biggest fundraising event was a Purple Unicorn party! I had an idea to organise a children’s party and charge admission to raise money. Having organised parties for my own children on numerous occasions this felt like a safe, familiar and fun option. I contacted a party and events company, which I had used previously and had a long chat with the manager who was simply amazing! She suggested the purple unicorn theme as they already had a purple unicorn mascot (plus, who doesn’t love a purple unicorn?) she suggested using the “WeGotTickets” platform and she offered to do the party entertainment and advertising free of charge!
We set a date over the school holidays and I was able to book a function room for a discounted price as I mentioned the event was for charity. I organised a hot dog and candy floss machine, balloons for room decoration and glitter face painting which I paid for myself.
The WeGotTickets website was so easy to use, I decided on a ticket price of £10 per child with one adult going free per paying child. I advertised the event on Facebook and through my daughter’s school/nursery and the party company promoted it on Facebook, Instagram, and Twitter, plus they emailed the event details to their full client list. I managed to sell 40 tickets so raised £400 from ticket sales, the money was automatically credited to my bank account a week after the event.
In addition I organised a raffle, sold unicorn cupcakes, sweet cones and unicorn headbands. I held a guess the number of sweets in a jar competition and charged £1 donation for face painting. My final total raised was £656!
It wasn’t too difficult or time consuming to organise, I was very lucky to have such an amazing party company on board and they took a lot of the organisation and stress off my shoulders. Everyone thoroughly enjoyed the party, including me!
I am not a natural marathon runner; if my husband had to describe me in one word it would be ‘clumsy’! My journey to the Virgin Money London Marathon start line has been tough at times. I like to think Kev has been with me each step of the way, during good runs and bad runs. I know that the marathon will be an emotional day and I hope there will be plenty of tissues at the finish line!
If you would like to donate to Stephanie’s cause, visit her JustGiving page.
It was a beautiful day at the Colchester Half Marathon 2019 (24 March), the sun was shining and there was not a cloud in the sky!
MS-UK had over 60 runners pounding the streets of Colchester, including an amazing duo who both wore and ran in a tyre!
Clare Thompson and her running buddy Dave, who ran the race while carrying car tyres, really went to town on decorating their accessories in aid of MS-UK. Clare said, ‘Some years ago my wonderful sister was diagnosed with multiple sclerosis. Since then all the family have been so grateful to the work MS-UK do and we have done everything we can to help raise money for this positive and hugely supportive charity’.
It was also great to see some of our Virgin Money London Marathon runners using the event as a training session with just five weeks to go! So far #TeamPurple have raised £4,000 collectively – Go #TeamPurple!
Thank you to our 130 wonderful volunteers! These types of events just cannot happen without your commitment. You all pitched in to help and support MS-UK in any way you could. You lined the course acting as event stewards and keeping the runners safe; handed out water, bananas, medals and goody bags; directed traffic and helped people park their cars, and our volunteer photographers took some amazing shots of everyone enjoying the day. We just can’t thank you enough.
See the amazing photos from this event in our Facebook photo album today!
MS-UK is here for anyone affected by multiple sclerosis (MS), to empower them to live healthier and happier lives by improving the understanding of MS and providing support where it is needed most.
Volunteers are paramount in our success at any event MS-UK attends. If you’ve been inspired and you would like to get involved and offer your help, please get in touch with Jenny on 01206 226500.
In January 2016 I had a very frightening experience when my eyesight in one eye deteriorated quite quickly to the extent that I wasn't able to continue my work as a dentist. Over the next year and numerous tests I was no further forward and my eye made some recovery. Following a second episode with my other eye in 2017 I had further scans and a lumbar puncture which finally led to the diagnosis of RRMS or relapsing remitting multiple sclerosis.
I started to learn about treatments, being a medic I was sure I would follow the disease modifying therapies (DMTs) or daily injections of immunosuppressants, but I was encouraged to try another approach. My own GP put me in touch with a friend of hers who had been managing his own MS through diet and exercise, Alan Caldwell. Alan was a great inspiration to me and when I first met him he had just successfully completed the Virgin Money London Marathon running for MS-UK. This was exactly what I needed to hear at this time, I was in shock with an MS diagnosis and scared for the future. As we know no one can yet predict the outcome of your MS and indeed, it affects everyone differently, so to know that Alan was doing so well following the Best Bet Diet, an exercise regime and supplements meant I was going to look at all this first.
I embarked on the Best Bet Diet which I thought would be so difficult at first, particularly cutting out all dairy and gluten but I did it and haven’t looked back. My neurology team have also been supportive of my choices which again is encouraging.
During all the uncertainty with my health and before I had received an MS diagnosis I decided to start running. I joined local Five Star Active group based in Auchterarder and puffed and panted my way through 2 minute runs!! I was a complete beginner and whilst an outdoorsy type I had never run before. I remember the elation I felt when eventually running one dark Friday night we realised we had run for 12 minutes non-stop!!
From there I ran a 5k then a 10k. With news in December 2017 that I may be facing MS I decided to sign up for a Half Marathon as I was terrified if I didn't do it then it may never happen. So in May 2018 a month after my confirmed diagnosis I proudly completed Loch Leven Half in 2 hrs 17 minutes.
During the rest of 2018 I tried to keep my miles up and my fitness level as I started to come to terms with having this chronic disease. I was learning (and still am) when to push my body, and when to rest, how to fuel and which foods keep me healthy.
I had dark days and towards the end of 2018 my GP suggested I needed some counselling which I have received both privately and from MS-UK. The services MS-UK provide have been a source of great help for me so I am therefore delighted to be able to raise funds for MS-UK.
I was dubious about entering the Virgin Money London Marathon as I was concerned it may be too much for my MS but I have gone from strength to strength over the last year, I don't know what the future holds, none of us do, but I run and keep as healthy as possible and stay in the moment as much as possible.
In January several of my running club buddies were starting their training for the London Marathon, we have nine from our club heading south for the run, and I thought if I’m going to do it, it’s now or never. I sent a message to Jenny at MS-UK to find out if there was a chance my waiting list place would come up and after a very excitable phone call, she offered me a place.
If I had a doubt about the marathon it was dispelled that day with my overwhelming excitement about it and also how delighted my friends, family and running buddies were too.
The training is so far on track, we have a wonderful coach who has put a great programme together for me. She knows about my MS and together we monitor it, she insists on two days rest after my long run and I never run consecutive days. Having other running buddies makes it easier to motivate yourself and the MS-UK runners have also been great, we interact in a Facebook group and follow each other on Strava.
I have some fundraising events planned but most of my target has been met from my initial post on Facebook sharing my story and my JustGiving page. I was overwhelmed by the amount of support I received. Many people did not know what I was going through and the messages I received when I finally told the world gave me a huge boost.
I am excited for London and delighted to be part of Team Purple, see you at the finish!!
Find out all about fundraising and becoming part of #TeamPurple on our website today!
There’s nothing quite like the festival atmosphere of the Virgin Money London Marathon. Runners train for months on end, put themselves through gruelling regimes that test the limits of their bodies, all to make their mark on one of the world’s most iconic races. Every year people come in their droves to show their support to these brave marathon men and women, among them our own #TeamPurple cheer squad who call and clap and holler our runners towards the finish line!
On Sunday 28 April 2019, the Virgin Money London Marathon enters its 39th year with news of a very special milestone. When the event rolls around, £1 billion (that’s nine whole zeroes!) will have been raised for good causes since the first event in 1981!
To celebrate, the Virgin Money London Marathon are launching the #ThanksaBillion campaign to recognise the achievements of everyone who has raised funds for charity.
Hugh Brasher, Event Director of the Virgin Money London Marathon, said: ‘The London Marathon has set a world record for fundraising for an annual one day event every year for the past 12 years, with an incredible £63.7 million raised from the 2018 event. That brought the total raised since 1981 to more than £955 million and on Sunday 28 April 2019, in the 39th London Marathon, we will break the £1,000,000,000 mark.
‘This is a phenomenal achievement and part of what makes the London Marathon unique. No other mass participation event comes anywhere near this kind of fundraising. We would like to thank every runner, supporter, donor, charity, volunteer, sponsor, spectator, our staff and everyone else who has contributed to this wonderful total.’
Want to be join the Virgin Money London Marathon party? Become part of our #TeamPurple volunteer family by contacting our fundraising team.
My name is Laura and I am delighted to have been given a spot in the London Marathon in aid of MS-UK. I decided to run for MS-UK to raise awareness and funds for all those that are affected by multiple sclerosis (MS), including myself.
Since being diagnosed earlier this year, it has really motivated me to challenge myself and I thought that the London Marathon was the perfect way to do this. I must admit, the thought of raising a minimum of £2,000 was very daunting at first however with the help of my family and friends, I was able to come up with some great ideas in order to raise as much money for the charity as possible.
Even though I still have plenty of time before the marathon, I am the type of person who cannot relax until I am meeting targets or seeing results so I wanted to begin my fundraising as soon as possible so that I had less pressure on myself close to the run and so that I had enough time to enjoy every minute of raising money and also training.
I have recently hosted a coffee morning at my house which initially I thought would hopefully raise about £300. I got together with my family and friends who all pulled together to create a raffle, lucky dip, a treasure hunt and not forgetting the most important part...making cakes!
I managed to create some leaflets which I posted through neighbors doors and spread the word to as many people as possible.
When the day came, I was astonished with the amount of people who attended to support me and help me raise donations. It was a very enjoyable and successful day which left me feeling very humbled by everyones generosity.
I managed to raise an amazing £1,200 with donations still flooding in even after the event!
It has left me feeling very excited to come up with even more fundraising ideas and I am so pleased that I have been able to raise that amount of money just a few months after I was given my sport with the MS-UK team.
You can find out more about fundraising in aid of MS-UK by getting in touch with our team today using our online form!
‘Our sister and cousin, Nicola, 48 year old mother of three, was diagnosed with multiple sclerosis (MS) in 2017.
‘Obviously such a diagnosis came as a shock to us all. From the beginning the support she has received from MS-UK has been tremendous. It gave her a forum to discuss her fears and engage with people who also have MS. In turn, it continues to give her strength and courage and is empowering her to live her life to the fullest.
‘Through Nicola we heard about the MS-UK sponsored places at the Royal Parks Half Marathon and as runners, it was an obvious way for us to give back, do an activity that we love, make a difference...all in all, a win-win situation.
‘Out the outset, as busy people, we wanted to keep our fundraising efforts simple to achieve our target of £800.
‘We canvassed family for their suggestions on how best to raise the money and the consensus was very much in favour of fundraising activities rather than just donations. This enabled us to bring our family and friends together and the desire to have some fun along the way!
‘We agreed our two events would be a garden tea party and a quiz to make the most of the lovely summer we had this year. Both activities exceeded our expectations – you can see we raised an amazing amount on our fundraising page!
‘The key challenge for us was to ensure that our guests at both events went away feeling they had an enjoyable experience and the £10 fee was good value. Feedback from both events exceeded our expectations, with suggestions we should set up our own afternoon tea business and turn the quiz into an annual event.
‘We smashed our target and raised approximately £1,200, which enabled us to spend the latter two months focusing on training for the race.
‘Both of us came away from this experience feeling a sense of pride in achieving some personal physical targets (we both set a new personal best) and in our own small way we have made a difference.
‘So what’s next? We are delighted to be volunteer stewards for the upcoming Colchester Half Marathon and looking to engage as many family members. Maybe we will see you there!
Karen and Maxine
‘After missing the chance to run the Virgin Money London Marathon through the ballot, I decided that for 2019 I would fundraise for a charity close to my heart, MS-UK. I'm pushing hard, taking on multiple challenges and races between now and the marathon. So far, fundraising is going ok.
‘My Dad was diagnosed with MS when I was a child. I still remember the day he sat me down and told me. I had no idea how bad MS was or how it was going to change our lives and yet it still tore me apart.
‘Sitting here now typing this still breaks my heart and brings a tear to my eye.
‘For the past 20+ years, I've seen MS take my father away from me. At first, it was only really fatigue that was noticeable and a few days where he wasn't great on his legs.
‘As time went on, he lost the ability to drive and eventually couldn't even walk or feed himself.
‘MS has also damaged his brain, wiping out his short term memory and his ability to talk. This has been the biggest impact on me, not being able to speak to him, ask him questions and all the things a son should be able to ask his father.
‘I regret not making the most of the last good years with him while I still had the chance.
My Mum cares for my Dad 24/7 which really takes its toll on her, she's stubborn though and does everything she can for him.
I chose MS-UK and the London Marathon to show my support for my family and to raise as many funds for such a supportive MS charity that gets much of its funding through the London Marathon charity places.’
You can find out more and make a donation on Gavin's JustGiving page.
This weekend our amazing #TeamPurple runners will be taking on the challenge of the Royal Parks Half Marathon - good luck!
The event kicks off at 9am on Sunday 14 October and is set in four of London's Royal Parks: Hyde Park, The Green Park, St James's Park and Kensington Gardens. It is the perfect autumnal tour of central London’s most exquisite outdoor spaces, and we can't wait to cheer everyone on!
If you can't make the event but want to stay updated, you can follow @MSUK6 on Twitter and enjoy the action in real time!
Good luck from all of us here at MS-UK, your efforts mean we can support people affected by multiple sclerosis to really make the most of each day - thank you!