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
Mandy Bunn climbed Kilimanjaro and raised a huge amount of money for MS-UK
I decided I wanted to do something big for my 50th birthday in January 2019. I wanted to see how far I could push myself both mentally and physically whilst raising money for a great cause. My partner, who has multiple sclerosis, uses MS-UK’s wellness centre Josephs Court in Essex regularly. I booked to climb Mount Kilimanjaro through Discovery Adventure. Located in Tanzania and standing at 5,895 meters above sea level, Mount Kilimanjaro is the tallest freestanding mountain in the world. It has always been on my bucket list and my father inspired me to do it!
The climb would take four and a half days, plus one and a half days to descent. The steep unpredictable terrain coupled with the altitude would certainly be the challenge I was looking for and very much a change from my day job. After roping in my friend Sue to join me I began fundraising for MS-UK. It is a national charity that is close to my heart and does great work. It is dedicated to empowering people with multiple sclerosis to make the most of today, and live life to the full.
After flying from Heathrow to Nairobi and then catching an internal flight to Kilimanjaro airport, we finally arrived at our hotel ready for the start of our adventure. After meeting with the commander Helen from Discover Adventure and the other group members we set off from Machame Gate at 10am, which is already at an elevation of 1,800 metres.
At this point we were all full of enthusiasm for the next seven hours of walking which lay ahead. We set off through the rainforest, the terrain was incredibly steep and therefore we had to go very slowly.
We carried four litres of water each and every day which we were advised to drink throughout the day in order to prevent altitude sickness – as you can imagine, there were toilet breaks aplenty! With an elevation of 2,835 metres, we arrived at Machame Camp at 5pm for some hot food and an early night.
The next day we were woken at 5.30am, the temperature had dropped to -5 degrees and I found myself trying to get dressed in my sleeping bag!
We started walking and spent six hours walking up boulders – the rainforest was beginning to end, the trees had disappeared and we started to walk on a path through ferns before we arrived above the clouds at Shira Cave Camp – with an elevation of 3,750 meters above sea level.
The porters were absolute troopers in carrying our kit along with their own and endeavoured to keep our spirits high by singing local songs. Unfortunately, the first member of our group dropped out due to altitude sickness. We enjoyed another cooked meal and another early night.
We were woken up at 5.30am again after a disturbed night’s sleep – although I was sleeping, the sleep quality wasn’t good.
Sue put the group through the usual morning warm up session which was entertainment in itself, more so for the locals!
Today was going to be a big test on altitude – we were climbing up as high as 4,600 metres above sea level to Lava Tour before dropping down to 3,900 meters to sleep. The reason we climb high and sleep low is purely to adapt the change in oxygen levels.
The terrain was “Mars-like”, very rocky and unsteady under foot. I really enjoyed that day and was still feeling good, however some of the group were showing the first signs of altitude sickness and really struggling.
After being woken up at the unearthly hour of 4.45am we started off by climbing the Barraco Wall, which was huge. It took two hours to climb up it before spending the rest of the day walking up and down hills in very hot weather. We had lunch at 10.30am and arrived at Base Camp at 4pm which stands at 4,900 meters above sea level. Unfortunately that day, two other team members left the trip, one pulled out, but the other was advised by the doctor he couldn’t continue. He had high-altitude pulmonary edema which is a life-threatening condition where fluid was on his lungs, so to continue the trip would have been deadly.
After six hours of terrible sleep, we were woken at 11pm to start the summit. I was given porridge (which is more like gruel). Just as we were about to go, another team member dropped out. Head torches on we started walking in absolute darkness, uphill and very slowly.
During the seven-hour uphill walk, people were being very sick, suffering from dizziness and becoming delusional, luckily for me, the only thing that remained was the slight upset stomach which I had on day two. The lack of air was hard, and everything became a big effort and I was really struggling with the cold.
We arrived at Stella Point just as the sun rose, but we still had 45 minutes to get to Uhuru Peak which at the summit stands 5,985 metres above sea level. As we walked to the peak, we were surrounded by other zombie-like walkers – some were being carried either to the peak or back down the mountain, and people were still vomiting, but I made it!
The overall relief of making it to Uhuru Peak gave me a second wind and after some photographs, I quickly got myself back down to base camp. The downhill walk was a killer on the feet. When we got back to basecamp, we had a quick lunchbreak and then another two hour walk to Millennium Camp (just because we hadn’t walked enough that day!) for a well-deserved sleep.
I was absolutely exhausted to the point I couldn’t unzip my bag to get my sleeping bag out. Everything seemed to require so much energy, which I just didn’t have. I just fell in the tent!
More force feeding and the final Kilimanjaro sing song and dance with the 50 strong crew who had supported and looked after us all the way. It was so infectious we were all singing and dancing in our exhausted state, it so lifted the mood.
Overall, my trip was varied with huge ups and downs and lots of laughter and camaraderie. This is undoubtedly up there with my best and most rewarding challenges. I’ll always a grateful to be able to have had the experience.
So thanks Pops for planting the seed!
What’s next you might ask? Well watch this space…
Always dream big and chase those goals because you never know when you will not have the luxury to be able to do it again.
I am extremely grateful for my family’s support and the generosity of everyone who has donated. There is still time to sponsor me and if you would like to, please click here.
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!
My name is John Williams and I’ve been asked to write a blog because of the way I’m trying to raise a little money for MS-UK. I’ve never done anything like this before so I’ll apologise in advance if I waffle on too much.
First, a little about me.
I’m a lifelong strength athlete who was diagnosed with multiple sclerosis (MS) in the summer of 2018.
I’ve trained for and competed in strength sports for most of my life - 45 years this year (I’m 55 at the moment). My first Olympic Lifting (the type of weightlifting they have at the Olympics) competition was in November 1974 and I went on to be a National Champion by the age of 16.
At the end of 1979 I competed in my first powerlifting competition, which is much more reliant on brute strength. Powerlifting is the squat, bench press and deadlift. A change is as good as rest so I had a go - the next Olympics in 1984 seemed so far away. I had every intention of going back to weightlifting.
I went on to be a multi British, European and World Champion across four weight classes and broke several World Records in the World Drug Free Powerlifting Federation. My last World title was in Russia in 2003, after which my body needed a rest but my need for endorphins runs deep so I switched back to weightlifting instead.
In 2004 I was British Masters (over 40) champion. I followed this up with a third place at the Welsh Open and first in the Welsh Masters. The next few years saw a number of operations, some of which were to repair the damage caused by years of long heavy training sessions and one or two to upgrade internal fixation I’d had put in years before following a motorcycle accident.
I’ve always been the sort of person who loves a challenge, even more so if someone has told me I wouldn’t be able to do it, so in 2009 I started the long road to the 2013 Masters Games. However, it was not to be and in 2012 I completely ruptured my right biceps at the shoulder and either ruptured or partially ruptured all four parts of my right rotator cuff (muscles in the shoulder). As far as recovery was concerned it was by far the most difficult injury/operation I’d had.
By the summer of 2014 I was back on the powerlifting platform representing Wales in the Four Nations Championships. My first competitive outing in a long time and I managed to break three British Masters Records, one of which had stood since 2000. During this time I even entered a strongman contest, a bucket list thing. I knew I had no chance of winning, the next oldest person was just over half my age but I managed to place top 3 in one event and actually won another. I was pleased I didn’t actually come last overall.
It was at this time that I began to notice it was taking longer to recover from workouts and my muscles ached far more than they should have. At first I put this down to 40 odd years of heavy training. I was still competing once, maybe twice a year and broke all the Welsh Masters Records in two weight classes and as I write I hold several open records across two weight classes as well.
My ability to train hard and recover was slowly but surely decreasing and by the beginning of 2018 I seemed to be constantly sore and was sustaining one injury after another – time for a visit to the doctors and a string of visits to the hospital.
Once I got my diagnosis of multiple sclerosis it was a bit of a relief to be honest. It could have been something far worse and at least I could still go to the gym, albeit training very differently.
I’ve always tried to put something back into the sport I’ve enjoyed for so many years, promoting contests, refereeing, coaching and I currently edit the website for the Welsh Strength Association so once I’d settled into a training routine my thoughts turned to trying to use what I could do to raise a little money for MS and the only thing I could think of was lifting weights.
So, that brings us to what I’m doing. Phase one of my goal is to total 600kg over the three lifts (powerlifting) and to set Welsh Masters Records in each lift at the Welsh Cup on 03 March 2019. At the time of writing this I’m on course to it but as you can imagine it will depend on having enough good days to make progress, I am incredibly stubborn and driven though!
I picked MS UK because it offers support and is hands on in its approach to helping - you can see where the money goes!
I’ve opened a donation page for MS-UK on Facebook.
Phase two of my goal will be more difficult – my plan is to return once again to Olympic lifting and compete in the Welsh Masters in November 2019 and hopefully raise a little more money.
If you’ve been inspired by John get in touch with Lucy to order your fundraising welcome pack today! Just email Lucy or call on 01206 226500.
If you feel ready to get going you can set up a Facebook fundraiser today!
'I’ve had a wonderful two months since joining Sportability. I feel that my life is beginning to start again with my MS no longer being a brick in my pocket!'
That quote came out quite naturally in a casual conversation with Mandy, at one of our sporting events. As a former journalist it resonated with me because of its utter simplicity and total authenticity. I was a professional writer and yet I could never have created, or even imagined, such a complete and vibrant description that in just a couple of word encapsulates what Mandy obviously felt as the restraining, the weighing down, effect of multiple sclerosis (MS).
Inspired by this we have recently been gathering simple profiles from various people who enjoy our events and activities. These are unscripted self-written comments, devoid of PR frippery and spin, but chock full of sincerity and an earthy originality. The results are truly revealing.
How about this as a powerful message from Roger, a 65 year old living in the Midlands. 'With MS there are two ways you can go, either switch off and wait for a cure or you can find a different way of living your life. Like a river finding a new course. Before my MS I was working 80 hours a week and doing very little else. Since my diagnosis, I have travelled more, had more fantastic experiences, a lot of them with Sportability, certainly more than I ever would have had without my illness.'
Or the frank, honest, open-ness of Jen from East Anglia. 'Prior to suffering with MS, I had always been an outgoing, confident, professional individual. However, I became a very different person as my symptoms took hold, robbing me of all of this, as well as my identity. I found myself experiencing the very unfamiliar feeling of vulnerability, having a total lack of confidence and self-worth. My world became a very small place.'
But she goes on to reveal something of an MS metamorphosis. 'Then I was introduced to Sportability and wow, I haven't looked back! This enabled me to experience a variety of activities, such as gliding, quad-biking and sailing. It's a wonderful feeling to be in an environment where you feel safe, where you are accepted as you are and where people focus on what you can do, and not what you can't. I come away from a Sportability day with a big smile and feeling emotionally energized. My confidence has grown as I realise that there is an abundance of things out there that I can in fact do!'
They are only words, but how meaningful and heartfelt they are. And what insights and, dare I say it, inspiration, they evoke. It is the things that people say, like this, that make us do the things we do.
David Heard, Chief Executive of Sportability
Photo: David Heard and Trish Deykin. At the recent 2018 Sunday Times Sportswomen of the Year Awards Trish received The Helen Rollason Award for Inspiration. She is the current Triathlon European Champion, and has been for last two years. She is also a former World Champion.
I came out of a meeting in mid-January and had a text message from my good friend and Tysabri buddy’s husband, Alister... ‘Are you up for this?’ he said, sending a link to the Race to the King event, a 53 mile trail ultra-marathon.
I’d been running for about 8 months and had a few 10k and a half marathon runs under my belt, including the Brighton Marathon. I thought about it, albeit briefly, and replied ‘You know what? Yes! This sounds fun, happy to do it in a day too’. There was an option to do it over two days, but that was far too sensible…
And then I kind of forgot about it. I ramped up my training for Brighton and managed it in 4hr 30m. It was tougher than I’d hoped but I didn’t stick to my race plan and went too fast too soon. Alister assured me that a marathon was far harder than anything else I’d do… I was doubtful.
I signed up for a walking event, which the organiser agreed I could run if I was fully self-sufficient. So I ran 45km of trails on my 32nd birthday. Running offroad was a real eye opener. It took far longer than I expected but was really enjoyable and, as the only runner in a walking event, I won!
Alister was following a 12-week training program, but I was struggling. With a full time job, three dogs, multiple sclerosis (MS) and awful time management skills, I wasn’t getting the miles in. Seven weeks before the ultra, Alister and I hadn’t even run together – how were we going to manage 53 miles in each other’s company? I was starting to worry. As if he read my mind, Alister invited me to join him on a 13.1 training run around town. It went well but there was work to do. Not long after that, I managed to start using the program. It meant some early mornings and late nights, but soon I was racking up 25-40 miles per week, and Alister and I were running every Sunday together, exploring the South Downs between Chichester and Eastbourne.
At this point we discussed fundraising. We should raise some money, but who for? I volunteered that I would like to raise money for MS-UK, and Alister could join me or choose another charity if he wanted to. I explained that the MS-UK website and chat rooms had been beneficial for me post diagnosis, and I’d like to support them. He was keen to join me, and the race begun!
Both of us are fortunate to have very supportive families, friendship groups and colleagues, and our JustGiving pages started seeing a lot of visitors. Whilst my close colleagues are aware that I have MS, it’s not common knowledge, and as I’m field based, I often don’t see people for months. Whilst my email was nonspecific, my JustGiving page was honest and held nothing back, which felt liberating. The email went to the entire business, and I let out a deep breath. Within minutes my inbox was full of kind, generous and supportive messages, some from people I knew reasonably well, and others who I’d only met once. It felt amazing.
Alister and I went on to raise around £1,700 each and proudly wore our MS-UK running vests as we took on the ultra-marathon on 23 June 2018. We set off from Slindon at 8.15am and ran (yes, we were still running) across the finish line in Winchester at just gone 10.30pm. It was an amazing experience and I genuinely enjoyed every minute of it. Our time was a little slower than hoped, but we had a headtorch malfunction, and both agreed we need to coordinate our toilet stops better in future. And yes, there is a ‘future’, Alister and I have only managed a few Parkruns together since but will be tackling at least one ultra-marathon in 2019 and aspire to complete a 100 mile ultra at some point.
I absolutely loved the mini mudder, it was great. I loved doing this for the charity MS-UK, because my Grandpa has MS, and it was FUN! On the day I was very nervous. I saw the adults doing it. We went to the course and I got ready.
I was running as fast as I could. The first challenge was to get through the rope. We had to squeeze! We had the tunnels they were very slippery. Next we had the monkey swing, it was like the monkey bars, but our hands slipped. That was the hardest! Then we had to run really fast up a thing like a hill. We had the running and jumping in the MUD! I swam in it. That was the most fun challenge.
SUDDENLY I saw there was another challenge! I was so tired. We had to climb under the rope. We had to do the leopard crawl.
I DID TEN LAPS OF THE COURSE!
I felt good for raising lots of money and I enjoyed telling people about MS-UK.
Mini Mudder is a 1 mile obstacle course mud run designed specifically for adventure-seeking kids. The course gives kids the chance to work as a team, get muddy, and experience the thrill of adventure. Rocco did this amazing challenge and raised over £100 in aid of MS-UK - every penny helps us to support even more people affected by mutliple sclerosis, so thank you Rocco!
With both of us having parents who are sufferers of multiple sclerosis (MS), we both believed it would be important to try and raise money to help them as best we can. At first, we looked at participating in a triathlon, but on second thought believed we should do something more extravagant, and so turned to the idea of a skydive. We knew this would put us both outside our comfort zones and looked forward to the challenge. We collected donations for around three months prior to the jump, both setting a target of £500, with an overall goal of £1,000.
As you can imagine, at first both of us made a lot of money but after a while the donations began to dry up. Therefore, we took to advertising our JustGiving page on social media, sending it to friends and family. We also asked around our schools for donations, which contributed significantly. Our jump took place on 03 November at Hinton Skydiving Centre in Brackley.
Family and friends came along to support which was a big confidence boost due to a high level of nerves. We had our briefing, met our tandem jumpers, and set off on the fifteen-minute journey up to 13,000 ft. The journey up was the worst part because it came into perspective just how high we were jumping from. On the way up, we took in the view of Silverstone racetrack and had one final briefing before the long fall back to ground. Alex jumped first, and Dan went second.
Both of us thoroughly enjoyed the experience and both genuinely believed it was the best of our lives. The feeling of falling is very hard to explain, but it's an amazing sensation like no other that fills you with high levels of adrenaline and excitement. We would thoroughly recommend a skydive to anyone thinking about doing one, the experience is so unique, and you will not regret it.
Overall, we are delighted to say to that both met out targets and ended with a total of £1,497. Once again, we would like to thank MS-UK for their unconditional support and we hope our money goes to a good cause.
Dan Wood and Alex Greene
Congratulations to all the businesses across Essex who celebrated their fundraising success at our 925 Challenge awards night on 22 November! Thanks to their hard work and dedication, they managed to raise an astounding £16,700 for people affected by multiple sclerosis (MS)!
Back in September, MS-UK officially launched our first ever 925 Challenge. Nine teams of local companies were handed countdown clocks and tasked with raising £925 before the timer ticked down to the end of 9 weeks, 2 days, and 5 hours.
The challengers - comprised of teams from NatWest, Charles Derby Financial Services, Team Pivotal, Ellisons Solicitors, OPM Response, Whitehall Electrical, White Hart, Push Energy and Direct Solutions - fought to be the first to reach the fundraising target by bringing the workplace together and getting creative.
As each team grappled to get the upper hand, the fundraising events became more and more innovative. We saw a 'dawn to dusk' golf day, a Swimathon, video game characters tackling an obstacle course, a car wash, a race night, and so much more!
The ideas were so good that once the clocks stopped we struggled to pick our final award winners!
After some tough deliberation we came to our decisions. The awards for ‘most money raised’ and the ‘team spirit award’ were scooped by the White Hart pub in West Bergholt who raised an incredible £6,000 by involving the community in their fundraising efforts.
Other awards went to Ellisons Solicitors for their quirky ‘Wacky Hat Wednesday’ event, OPM Response for their outstandingly fun fundraising films, and Direct Solutions for their innovative ‘Display for MS-UK’ initiative. As well as great team work, MS-UK recognised some individuals who went above and beyond during the challenge including 6 year old Shara Stevens who individually raised £300 and swam over a mile during local business networking group Team Pivotal’s Swimathon.
Collectively teams in our first corporate challenge raised a wonderful £16,700, which smashed our target of £10,000. We are delighted with the energy and enthusiasm all teams have shown for the challenge bringing colleagues, clients and customers together to raise both awareness and much needed funds for MS-UK.
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!