Hi, my name is Emma and I am the Community Fundraiser here at MS-UK, a role that I grow to love more every day!
My former long-term working life was in sales and management, and more recently I have been volunteering as an Age UK Befriender and an NHS Volunteer Responder and Vaccination Steward, the main purpose being to provide community support by calling the many people across the UK living in isolation, and who have little or no contact with the outside world within these recent difficult times. Lending a friendly voice and listening ear can make a big difference to the lives of those who are dealing with loneliness.
The rewarding nature of this experience has led to my career change to the charity sector, which I find thoroughly fulfilling and rewarding. At MS-UK I am truly privileged to deal with such wonderful supporters, fundraisers and volunteers who go out of their way to do such amazing things to enable us to provide our vital services.
You can contact me on email@example.com and I am really looking forward to hearing from you!
Alessandra from Mogrify shares how they created a running team to support MS-UK
It’s a sunny summer afternoon in June 2021, and I’m wrapping up a meeting with my colleague Rodrigo. He tells me that he’ll soon be going for his evening run, and I tell him that I haven’t been running in ages. Why not? – he asks me. Busy life, little time, and perhaps lack of motivation, I reply – the last time I trained for something was 10 years ago, when I ran a half marathon for the Multiple Sclerosis Society. That’s interesting, he says – I’m really keen to do something to support people living with multiple sclerosis (MS). That’s it. We decide then and there that we’re going to do something for MS-UK, and we start looking for a running event at which we could raise some money for a cause close to both of our hearts.
A week later we catch up again. The event is chosen and we’re thinking about how to make the most of the fundraising campaign. How about involving our colleagues through our social club, Mogrify Social Committee (MoSo)? – says Rodrigo. What a brilliant idea! Let’s go for it! – I reply. And that’s the way it all started. The initiative has a great uptake: MoSo organizes the fundraising website (and makes a donation – thanks MoSo!), the T-shirt delivery and coordinates weekly training. We’re a group of 13 (nearly 20% of the company!) and we make a video to promote our initiative. We even have a name, Los Pinatas, and a mascot! Everybody is very excited about the run which is approaching fast.
Early on Sunday 26 September early (at least for my standards on a weekend!), we’re all in front of beautiful Ely cathedral. The weather is perfect - light breeze, overcast but no rain. We’re all fresh and raring to go. Some of us are doing the half marathon, some the 10K, everybody determined to complete their chosen task.
We made it! All hot and sweaty we cross the finishing line, thinking whether this was our personal best or just glad it’s all over!
With a sense of achievement, we sit down on the lawn with a lovely picnic offered by MoSo. We’re unmissable in our MS-UK purple T-shirts that promote awareness of multiple sclerosis and also attract the attention of the organisers, Ely Tri Club. So much so that they offer to donate the value of our tickets to our MS-UK fundraising page. We’re grateful and chuffed!
Thank you to all those who’ve supported us and MS-UK. We hope that our contribution positively impacts the lives of our family members, friends and people we don’t personally know who live with MS.
Undoubtedly you have positively impacted our lives, inspiring and motivating us to pull us together for a great cause.
Jane Taylor recounts the day her husband Gilby reached new heights
As we all know, multiple sclerosis (MS) is, at best, unpredictable. So, you can imagine when we first dreamt up the idea of my husband, Gilby, who has primary progressive MS, going to the top of Belstone Tor on Dartmoor – it all sounded exactly that – just a dream.
We are very lucky to live in beautiful Dartmoor, Devon, and we can see Belstone Tor from our bedroom window. Gilby sits and looks at it every day and ponders what the view might be like from the top, never thinking he would see it as he uses a wheelchair to get about. Gilby has an all-terrain mobility scooter which gets us tantalizingly close, for example to the local Nine Maidens Stone Circle. From there we sit and have a coffee, looking in awe at that magnificent tor rising above us. However, at 479 metres high, it is out of bounds even for the hardiest mobility scooter.
But neither of us had realised just how awesome North Dartmoor Search and Rescue Team (NDSR) are. We spoke to them via the local pub landlord and they jumped at the chance to help! Their plan was to get Gilby to the top using both a Land Rover and a stretcher. The tor is challenging, with plenty of granite boulders hampering the route up – this was going to be no mean feat.
Plans were made for the assent by the NDSR Team. We had to sort out a few medical issues to make it possible – the team also provided a doctor for the day. That just left us leading up to the day to hope that, firstly, the weather was going to be kind, also that Gilby was going to be well enough, and, finally, that the team were not called elsewhere – not too much then!
We need not have worried. As the day dawned, glorious sunshine spilled over the top of the tor to wake us up from our fitful sleep. We looked out the window and said “today we are going up there.” And what a day it was! So many people from the village and beyond came to support us, both in person and on live stream. It was a day filled with laughter and love, and it was so inspiring as the NDSR Team reached the top after their exhausting climb and everyone cheered.
Reaching the summit
The view was magnificent. As we got there Gilby was so excited – he went that extra bit and asked the NDSR Team to stand him up, in order that, as he put it, he had his own two feet on the top of that tor. There was not a dry eye in the house! A couple of villagers set up a bar at the top and we all had a glass of bubbly. The occasion was capped off by the NDSR Team then carefully carrying Gilby to a granite rock to sit with me so we could cuddle up together to take in the view – awesome! It was the first time in 12 years we have sat on a rock together, and it was a wonderful reminder of our hill walking days of old.
A good cause
As a thank you to the team we set up a Just Giving page to which family and friends gave generously. Then our local BBC radio wanted an interview, which enabled us to promote the page further, together with local papers. At time of writing, we are delighted that due to the wonderful generosity of everyone – the page has raised £5,000 for the NDSR Team, which is fantastic – a small thank you for a big ask!
MS steals so much from us – both MSers and our families. Every day can be a challenge and an achievement in itself. Then days come along when you can amaze yourself and do something you thought was lost. It made us realise we must not stop dreaming. If we keep positive and look for solutions, things do happen. We have both felt we’ve remained on the top of that tor since – on top of the world! Our biggest thanks to NDSR Team for making dreams come true – you are awesome!
This article was published in the latest issue of New Pathways magazine. To subscribe to the magazine click here
On 25 September, it's International Ataxia Awareness Day. Dr Gretchen Hawley has written this piece to help you understand what ataxia is and some recommended exercises that you can do if you live with this condition.
Ataxia is described as a lack of muscle control and coordination of movements due to damage to the spinal cord and/or cerebellum, the part of our brain that controls balance. One of the most obvious ways ataxia presents in people who have multiple sclerosis (MS) is walking with an unsteady or staggered gait. This may mean that you have a widened stance, irregular foot placement, and abnormal distance between each step. Fortunately, there are many therapies and strategies that can be beneficial to improving ataxic gait.
Physiotherapy exercises can help improve and maintain function/movement. General guidelines, when performing exercises, are to incorporate motor control exercises. For example, practicing standing up without falling backwards or coordinating arm and leg movements while taking a single step. Additionally, balance and aerobic training can help improve motor control as well as fight fatigue. You can find several ataxia exercises here. Exercises should generally be performed for at least 20 minutes, 4 days a week, if your body can tolerate it. Remember that quality is more important than quantity.
General guidelines for exercising as well as moving around your home or community with ataxia are:
- Do one task at a time. Avoid multitasking.
- Make sure you’re stable after standing and before you take a step.
- Focus on quality of movement rather than speed.
Neurologic music therapy (NMT) and rhythmic auditory stimulation (RAS) have also been found to be effective therapies for ataxia. NMT is the culmination of music therapy, neurology, and brain sciences and is classified into 20 scientific and evidenced-based music interventions. The techniques are applied using music and rhythm to directly affect cognitive and physical function. RAS is considered to be a type of NMT and is defined as a therapeutic application of pulsed rhythmic or musical stimulation in order to improve gait or gait related aspects of movement. These treatments have been found to be effective in facilitating the prediction of motor timing and gait rhythm, ultimately resulting in improved foot placement and less staggered gait.
Finally, implementing “modified independence” during your day-to-day activities can be an effective way to improve coordination as well as safety. This means using a mobility aid, such as a cane, walker/rollator, trekking pole(s), etc. Using any of these aids can result in the ability to accomplish your tasks, such as walking around your home, climbing stairs, performing chores, but while ensuring maximum safety. Personally, I enjoy having my clients use a rollator while practicing walking so they can focus on foot placement and leg coordination, rather than additionally having to focus on balance. There’s no need to focus on everything all at once. Modify at first to allow your brain to focus on fewer components. Then, as you get stronger and improve your coordination, you may be able to take the mobility aid away.
If you'd like to learn more about MS-specific exercise, you can attend our monthly information sessions with Dr Gretchen Hawley. Find out more and sign up to our next session here.
On Monday 20 September, there's two introductory sessions to our mindfulness courses. Our nine-week course is hosted by Phil Startin and here you can find out a little bit more about him and how mindfulness can benefit people living with MS.
I’m excited to be leading the Mindfulness Based Stress Reduction (MBSR) course for MS-UK. For me, it draws on three important and consuming parts of my life – my own meditation practice, teaching the MBSR course to the general population and to people with multiple sclerosis (MS), and living myself with Primary Progressive Multiple Sclerosis for over 14 years. I’ve been practising mindfulness meditation for over a decade now, and have gone from being really quite sceptical of it ('hippy tree-hugging' was my view of meditation before I started), to it being an important part of my life and a really positive contribution to my health and well-being, which is why I started teaching mindfulness.
So, what’s helped change my view of mindfulness? Well, there is now considerable medical evidence of the benefits of mindfulness in alleviating stress and anxiety, and that stress and worry can contribute to exacerbation of MS symptoms, relapses, progression of the condition, and perhaps even to the on-set of the condition itself. I know that mediating makes me feel better and has helped me deal with some of the huge changes in my life since diagnosis, and if it can help improve the trajectory of this degenerative condition I have then, fantastic!
Mindfulness has also helped me deal with some of the symptoms of MS. I think regardless of when you were diagnosed and where you are on your MS journey, typically those of us with MS need to deal with the unpredictability of the course of the condition in terms of disease activity and relapses, as well as progression. But we also have to deal with the wide-ranging uncertainty around future physical and cognitive levels, with the associated impact that these will have on many aspects of our life – dealing with loss of function and the impact this has on our hobbies and careers, and how it affects our relationships – with our partners and family, and our friends. This includes too our relationship with ourselves and who we are, our personal values and goals, and our relationship with the condition itself. Pain and spasticity can also arise and have a significant impact on day-to-day life.
Symptoms vary widely from person to person and all these changes can be frequent and dramatic at one extreme, or almost imperceptible at the other, but living with changing 'norms' is often part of the MS lived experience. I’ve personally found mindfulness helps me deal with the consequences of living with this condition, and recent research indicates mindfulness can improve the “quality of life” of those with MS, enabling us to live better with many of the MS symptoms.
I started my MBSR teacher training at Bangor University over six years ago now, and am still supervised by a member of the staff there. For this MS-UK MBSR course, we have made some modifications to the standard MBSR course to make it even more relevant and helpful to those of us with MS, including a whole new session on lifestyle changes.
To take part in the free mindfulness introductory session, please contact firstname.lastname@example.org.
To be honest with you, the past eight years that I have run the London Marathon, New York Marathon, a few 10k's and swam the Serpentine (let’s not talk about that one!), I have never had a problem raising money for the wonderful charity that is MS-UK.
I am in the very fortunate position to work for Slimming World and have very large groups, therefore raising money was never an issue. I would simply set up a MS-UK table with my sponsorship forms and tins and with over 500 people walking through my doors on a weekly basis… the money always rolled in.
However, this year is very different and without being negative, fundraising has been difficult. I think people are unaware that the marathon is October, they always expect it to be in April. And for me, numbers of members at work have dropped dramatically as we worked virtually for over a year, and potential members don’t know we are back open.
Even though I have managed to raise some money, it’s not at the level I have before, and it’s really bothering me. I’ve realised that I’ve got to look at other ways of trying to get that so much needed cash for MS-UK.
A few things have worked for me. I’m not very good on social media but have started to put all my runs on my Facebook page and talking about how I’ve got to run a certain mileage and taking photos along the route and then posting them. I’ve always found that if it’s raining (which it always seems to do just as I’m going out for my run) and I take a picture of me wet, and someone will always send me some money whilst they are laughing!
I am trying to talk about it all the time and boring people stupid. I even had an estate agent over the afternoon I wrote this blog, and when he saw my medals, ‘Aha!’ I thought ... ‘An opportunity here!’. It worked, £20 in the bag!
Also, when I’ve been posting my JustGiving page, I have been adding how MS-UK really struggled through the pandemic and how they had to sell their building in order to keep the charity going, pulling on their heart strings… but sadly the truth. Another £50 in the pot.
I wish I could offer more helpful tips. But one thing I do know (though not something you should rely on), that on the two weeks up to the marathon people start to come forward a little bit more to donate, especially if you keep reminding them how far you had run that week. Also, the day after the marathon when you limp into work in your slippers, they feel so sorry for you they have no option but to hand you money!
Good luck and happy running.
Ever forget where you’ve put your keys? Struggle to find the word that’s on the tip of your tongue? Can’t concentrate? You’re not alone. Thinking and memory problems affect more than half of all people with MS and can have a big impact on your day-to-day life. The MS Trust website offers an interactive web zone to provide everyday tips and tricks to help lift the ‘cog fog’.
‘Cognition’ is the general word that covers all aspects of thinking. It includes memory, concentration, and planning. The MS Trust have developed Staying Smart for people who want to learn more about how MS affects their cognition and to take action to reduce the impact that these problems have on everyday life.
Cognition difficulties generally fall into one of six categories, so Staying Smart focusses on those to help you quickly navigate to the information you need. You can work out which type of thinking is tricky for you, and select one of the everyday problems you experience, this will take you directly to the expert advice, hints and tips you can use yourself.
The most important feature of Staying Smart is you! It gives you the opportunity to learn from other people with MS facing similar issues. On each of the six key information pages, we encourage you to add any ideas and hacks which have made all the difference to you. It might be just the thing that someone else needs to help them.
To take a look at Staying Smart to both give and get advice take a look at the MS Trust's website: www.mstrust.org.uk/staying-smart
The burden of fatigue
81% of people living with multiple sclerosis (MS) experience fatigue (1). In an interview study with people with MS, one woman described fatigue as, “‘it puts my body in a situation where I feel like I’m shutting down. Like I’m just stuck in concrete and can’t move” (2). This type of fatigue is different to normal tiredness and isn’t usually relieved by sleep or rest (3).
Fatigue can have a big impact on people’s lives. Research shows that fatigue in MS is associated with:
Developing treatments to help manage fatigue is important not only to alleviate the symptom but to improve overall quality of life. In collaboration with people with MS, families and healthcare professionals, the MS society has identified fatigue as a top research priority (5).
The Flexible Brain Training (FLEX) project is an online program developed by researchers at King’s College London and people with MS. FLEX is designed to help people with MS manage the impact of fatigue on their lives though a type of brain training.
What is flexible brain training and how might it help?
Evidence shows that fatigue affects areas of our brain which are involved in processing information (6). For example, you might notice when you’re fatigued it’s difficult to focus or take in new information. To get around this our brains make mental short-cuts, for example skim reading.
By continually using these short-cuts our brain gets used to following the same path and the short-cuts can become automatic. These automatic short-cuts can result in our brains becoming less flexible over time. So, rather than taking in new information and adapting to environmental cues, our brain relies on the same old paths it is used to taking.
The FLEX project is series of self-guided, online sessions over a period of 3 weeks, designed to increase brain flexibility through repeated practice.
The FLEX project will assess whether we can
We are now testing the FLEX program to see if it is helpful for people with MS.
We are recruiting people with MS who experience fatigue to take part. Participation involves
To find out more please register your interest on the study website: www.flexproject.co.uk
'I was contacted by Molly from MS-UK regarding donating a prize for their first virtual auction. We were of course delighted to donate a case of our World’s Favourite Wine Selection in order to help raise funds and support such an important charity and the vital work that they do', says Dan Farrell-Wright, director at Wickhams.
Dan continues, 'The 'World’s Favourite Wine Selection' case includes six bottles, one from each of the big beasts of the wine world including a Pinot Grigio, Cabernet Sauvignon, Sauvignon Blanc, Merlot, Chardonnay and Malbec. All of the wines in the case are great examples of their type and have been carefully selected by us. The case includes a bottle of Peculiar Mr Pat, Punto Alto Malbec, Sierra Grande Cabernet Sauvignon, One Chain 'The Googly' Chardonnay, San Antini Pinot Grigio and Whale Point Sauvignon Blanc.
Sourcing the finest Estate bottled wines, here at Wickhams online wine and spirit merchant, we curate collections from the everyday to the classics while ensuring there's something to suit all tastes. We passionately believe in stocking wines, spirits and gift sets at a range of price points, to ensure our products are accessible to all.'
'I was contacted by Molly from MS-UK to donate a prize for their first virtual auction. Experience Days provides thousands of experience gifts across the UK, from bungee jumping to spa days - so no matter what your giftee loves to do, you’ll find something for them.
We have a long history of engaging with and helping charities with auctions and events, donating our vouchers as prizes – so we were only too happy to join in! MS-UK is a cause we have followed and donated to in the past; supporting those with multiple sclerosis with a range of resources, MS-UK is an essential charity and one we are proud to support. We hope that our donation to their virtual raffle goes some way to help this worthy cause.
We wish MS-UK the best of luck with their virtual auction!'