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MS-UK Blog

Introducing Emma

Posted on: October 25 2021

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! Emma photo.jpeg

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 emma@ms-uk.org and I am really looking forward to hearing from you!

Mogrify supports MS-UK at Ely Runfest

Posted on: October 21 2021

Mogrify photo.jpgAlessandra 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.  

Thank you! 

Dreams come true

Posted on: October 18 2021

jane and Gilby on Belstone Tor NDSRT.jpgJane 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.

Planning began

WRtfpdPA chris godfrey.jpegPlans 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

Sleep tight

Posted on: October 13 2021

iStock-1182205974_1.jpgThis article is taken from the latest issue of New Pathways magazine. To subscribe click here

 

Wake up refreshed with this advice for a better sleep

We all struggle to sleep from time to time. But getting a good night’s kip is essential for everyone’s health, and especially so when you live with a chronic condition such as multiple sclerosis (MS). Try this tips for a better night’s rest.

The importance of light

Most people would agree they sleep easier in the dark. Just think how easily morning light in the summer months can cause you to wake up at 5am unable to get back to sleep. This is due to your circadian rhythm, otherwise known as your sleep-wake cycle, and it’s directly controlled by sunlight. “Your sleep-wake cycle influences your brain processes and hormone production, making or breaking your quality of rest,” says sleep expert Christine Lapp (www.sleepjunkie.com). “At night, your brain senses a lack of sunlight, triggering the production of melatonin, a sleep-inducing hormone. In the mornings when the sun rises, it tells your brain it’s time to wake up – sunlight hinders melatonin production and keeps your body energised.”

To help re-set your circadian rhythm, try and get as much early-morning sunlight (though easier said than done in the UK sometimes) as soon as you wake up. “This can include going outside for a quick stroll or merely enjoying breakfast in a sunny spot,” says Christine. “At night, keeping lights low and eliminating blue-light from your bedroom can prove powerful in helping you fall asleep faster.”

Blue light, emitted from electronic devices like smart phones, tablets and other screens, tricks your brain into thinking it’s earlier in the day, and so hinders melatonin production. And if all you wake up to is a dank sky and dark clouds, you can try faking it. “Sunlight alarms are becoming more and more popular as they simulate sunrise and sunset on a small scale. These strengthen your sleep-wake cycle and allow you to start your day a more peaceful way,” says Christine. “In more severe cases, a lightbox is required for light therapy. In these instances, it’s suggested individuals sit in front of a bright light for 30 to 40 minutes after waking up in the mornings to keep their internal clock in sync with night and day.”

No napping

When you have MS, fatigue can be very real and the need to nap is overwhelming. If you have to take a nap, try to keep it earlier in the day so that it doesn’t interfere with your nighttime rest. “Sleep specialists agree the most opportune time to squeeze in some mid-day shut-eye is around five or six hours after you wake up. However, that’s not always possible on a day-to-day basis,” says Christine. “To play it safe, always plan your naps at least five hours before bedtime. Taking a nap anytime in the five hours leading up to your bedtime can make it harder to fall, or stay, asleep.”

Ditch the drink

It is commonly believed that alcohol helps you sleep, but it actually disrupts it. “The key drawback of consuming alcohol before bed is the reduction of rapid eye movement (or REM) during sleep,” says pharmacist Carolina Goncalves from Pharmica (www.pharmica.co.uk). “REM occurs 90 into your sleep and at this stage you usually have dreams. Therefore, REM disruptions caused by alcohol consumption can lead to lower quality of sleep, leading to potential issues with drowsiness and poor concentration during the daytime.” Experts recommend you have alcohol no later than four hours before your bedtime.

Eat right

Certain foods can help send you to the land of nod. These include poultry, which contains an amino acid called tryptophan. It helps your body make the feel-good hormone serotonin, which then converts to melatonin, the hormone that makes you sleep.

Yoghurt, cheese and milk are good for calcium, which helps process the hormones that help you sleep, melatonin and tryptophan. Bananas are high in potassium which helps to keep you asleep throughout the night. They also have tryptophan and magnesium which are natural sedatives. 

Whole grains encourage insulin production that result in tryptophan activity in the brain. They also have magnesium which is said to help you stay asleep. When magnesium levels are too low, you are more likely to wake up during the night.

Avoiding caffeine in the afternoon can make a huge difference to your ability to fall asleep come nighttime, too.

Mattress matters

To fall asleep and stay asleep, your bedroom needs to be serene and comfortable. And comfort starts with the bed itself. “Living with MS can cause stresses and strains to the muscles and joints in your body,” says Carl Walsh, sleep specialist at Bed Guru (www.bedguru.co.uk). “One of the biggest changes you can make to support your body and ease the stress is to swap out your mattress. 

“Pocket-sprung mattresses adapt to your body shape whilst you sleep, relieving the pressure on your back and joints. Having adequate spinal support is one of the most important aspects of a comfortable night’s sleep. When your back is in a compromising position, your muscles will tighten, causing stress and pain. Pocket sprung mattresses help to reduce this stress, giving you a comfortable night’s sleep. Alternatively, try an orthopaedic or memory foam mattress.

“Similarly, place one or two pillows between your knees to reduce the pressure on your spine. If you sleep on your back, you can place a pillow under your knees to keep your back straight and comfortably supported. Or purchase a mattress topper as they provide great support, without the need to buy a new mattress. They have been specially designed to provide extra comfort and increased support for your spine,” says Carl.

Getting a good night’s sleep makes a world of difference to how you feel, and with a few tweaks, hopefully you’ll get your eight hours.

A beginner’s guide to Spoon Theory

Posted on: October 07 2021

You may be wondering what the term ‘spoon theory’ means, and in this blog we’ll explain what it is and how it is useful for people living with a long-term health condition, such as multiple sclerosis (MS) and those around them. iStock-1182205974_0.jpg

Chronic conditions can come with symptoms that include fatigue, and with MS there are two types of fatigue. Primary fatigue is caused by the demyelination that occurs in the central nervous system, slowing down the messages from the brain. Secondary fatigue can be a result of the other symptoms one may experience from MS. For example, disturbed sleep can be from bladder issues, pain or spasms, or fatigue may be a side effect of medications taken to aid MS symptoms.

Fatigue is more than the tired feeling that most people experience. Day to day tasks can be difficult to complete and is the feeling of exhaustion for extended periods of time. Lifestyle adaptations can be helpful, such as a change in diet, pre-emptive measures ahead of a particularly busy day or vitamin supplementation.

So, what is Spoon Theory? This term was reportedly introduced by Christine Miserando, who lives with lupus, and it was developed to help illustrate to the people in her life how fatigue feels for someone living with a chronic condition. The idea is that people without a chronic health condition start the day with an unlimited number of spoons, whereas someone with a health condition starts the day with a certain number of spoons.

Different activities throughout the day use up the spoons, and once the number of spoons for that day have been used, the only way to replenish them is by resting and getting good sleep. Getting ready for the day may use up as many spoons for as many tasks, for example, showering is one spoon, getting dressed is another. Or, if you wake up from a bad night’s sleep, you might begin with less spoons for the day than you might usually have.

Spoon theory helps the person living with MS understand their own pace and the tasks that they can realistically do in one day, whilst recognising that adjustments might need to be made. It also helps family and friends understand what it’s like to manage fatigue and how it impacts your daily life.

To learn more about MS and fatigue, download our latest Fatigue Choices booklet. From supplementation to tips on daily adjustments that you can make, our Helpline team has put this together for you to access it whenever you need to. Don’t forget, you can contact our helpline team free on 0800 783 0518 or via email at info@ms-uk.org.

Spinach and chickpea curry - National Curry Week!

Posted on: October 05 2021

This week, it's National Curry Week and we've got a warming, hearty curry recipe from the book, Deliciously Ella Quick & Easy: Plant-based Deliciousness by Ella Mills. Packed full of recipes to shake up your mealtimes, this selection of fuss-free ideas will inspire you every day. 

SPINACH & CHICKPEA CURRY copy.jpg
© Nassima Rothacker

Serves 4, with rice

  • 1 tablespoon coconut oil
  • 1 onion, finely chopped
  • 4 garlic cloves, finely chopped
  • 2 celery stalks, finely chopped
  • 250g spinach
  • 1 × 400g tin of coconut milk
  • a 2.5cm piece of ginger, peeled and finely chopped
  • 1 teaspoon mustard seeds
  • 1 teaspoon ground coriander
  • 1 tablespoon medium curry powder
  • 1 tablespoon ground cumin
  • 24 cherry tomatoes, sliced
  • 2 × 400g tin of chickpeas, drained and rinsed
  • ½ lemon
  • 2 tablespoons plain yoghurt (we use a pure coconut yoghurt)
  • pinch of chilli flakes (optional)
  • salt and pepper

 

1. Put the coconut oil into a large saucepan with the onion, garlic and celery, and some salt and pepper, and let them cook on a medium heat for 5–10 minutes, until the celery and onion have softened.

2. In a separate pan, wilt 100g of spinach with a splash of boiling water. Once wilted, add half the coconut milk and use a hand blender to blitz the spinach, so that it’s smooth.

3. Once the celery and onion have softened, add the ginger, mustard seeds, coriander, curry powder and cumin. Let the spices toast for a minute or so before adding the puréed spinach, cherry tomatoes, chickpeas and the rest of the coconut milk, plus a big sprinkling of salt and lots of pepper.

4. Turn the heat up so that it starts bubbling, then turn down to a simmer. Simmer for 15–20 minutes, adding the rest of the spinach for the final few minutes. Once the spinach has wilted, add a squeeze of lemon and the yoghurt plus a sprinkling of chilli flakes, if you’re using them and serve.

Feeling inspired by the London Marathon?

Posted on: October 04 2021

The marathon has been and gone for another year, and we’d like to say a huge thank you to all our runners from this year’s events! Together, you have raised £154,569. All the money raised will be used to help people affected by multiple sclerosis (MS) to live healthier and happier lives. Without our incredible fundraisers, our services wouldn’t be available to provide the support that so many people need. London Marathon 2021 - MS UK - Jon Dadds-29.png

If you’re feeling inspired by the marathon fever, why not run it yourself? It’s an incredible opportunity to complete this iconic event in London, or you can even do it virtually from a location of your choice! The ballot is open from 04-08 October or if you’ve missed the ballot, we still have spaces which are going fast. You can apply here and join #TeamPurple.

Why run for MS-UK?

As an independent charity, MS-UK relies on donations and fundraising events to provide the helpline, counselling, magazine and online activities. The MS-UK Counselling service is a one-of-a-kind opportunity for people living with MS to discuss their feelings in a safe space, with a counsellor who is specially trained to understand MS. It is the only specialist service in the UK and completely relies on donations and fundraising to fund it.

Not only will you be supporting the existing services MS-UK provides, by running and fundraising for us, you will be helping to shape the future of the charity. You will have support from us every step of your marathon journey, with our Fundraising team being there to answer any questions you have, inspire you with bonus fundraising ideas, along with regular updates to see you through up until the big day!

On marathon day, #TeamPurple are out in full force to cheer you on along the scenic route through London’s landmarks and you’ll be greeted with a post-race reception, which offers massage, food and a big well done!

Ready to sign up? Click here for the London event application form or click here for the virtual event form.  If you have any questions, please contact our Fundraising team on 01206 226500 or fundraising@ms-uk.org.

Medicinal Cannabis and MS – What you need to know

Posted on: September 28 2021

Cannabis Choices Book Front Cover.jpg

Living with multiple sclerosis (MS) is a unique experience for everyone, including the range of symptoms someone might have and or the treatments that are available to them. Medicinal cannabis is a treatment that people up and down the UK need access to, and not just those living with MS. 

It was legalised for medical purposes in 2018, but unfortunately, it’s renowned for being difficult to access. This has improved over time, and we’ll be running through some of the changes in access to medicinal cannabis, which are explained in detail in our latest edition of the Cannabis and MS Choices booklet that you can read and download for free.

Despite the government legalising medicinal cannabis, getting access to affordable private prescriptions is a hurdle for many, since getting it on the NHS is also quite tricky. The methods in which medicinal cannabis can be obtained in the UK include cannabis flowers, which would be taken via a vaporiser or tinctures administered under the tongue, similarly to high-street CBD oils. Sativex is an oral cannabis-based spray that can be accessed in the UK, with detailed information inside the Cannabis and MS Choices booklet

A new study is underway in the UK with 20,000 patients to have a further look at the benefits and clinical effects. Project Twenty21 is being led by Professor David Nutt, who also runs the organisation Drug Science, to lead studies without political or commercial influence. The study comes in response to the National Institute for Health and Care Excellence (NICE) saying that there is not enough evidence to prescribe medicinal cannabis on the NHS. iStock-1075376246.jpg

Some people living with MS may benefit from CBD products available to buy on the high street. These are made using cannabinoids and do not contain THC – the psychoactive element of cannabis – and is found in hemp. The primary use of CBD is for pain relief and is available in topical creams or as tinctures that can be put under the tongue or mixed in food and drink. 

For more detailed information on the use of medicinal cannabis and CBD for MS symptoms, download our latest edition of the MS and Cannabis Choices booklet. Don’t forget, if you have questions about MS, treatments, or need emotional support, you can contact our helpline Monday to Friday, 10am to 4pm via webchat, email info@ms-uk.org or call 0800 783 0518. 

What is Ataxia?

Posted on: September 23 2021

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. Headshot.jpg

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

Learn about mindfulness with MS-UK

Posted on: September 16 2021

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. Phil Startin - Trustee.png

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 register@ms-uk.org

 

Five reasons to join the MS-UK Supporters’ Club

Posted on: September 15 2021

We’re so excited to announce the launch of the MS-UK Supporters’ Club and we’d love to have you join! The Supporters’ Club is a way to help sustain the future of MS-UK and the services that we provide to everyone affected by multiple sclerosis (MS). Here are five reasons why you should join today!

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Easy to set up

It couldn’t be simpler to set up your monthly contribution to the MS-UK Supporters’ Club. All you need to do is fill out this form and pick your donation amount via JustGiving. It can be one of our pre-selected amounts or you can pick your own contribution. Every penny counts and goes directly towards supporting people living with MS.

Support the community

When you donate to MS-UK, you’ll be safe in the knowledge that 100% of your donation goes into supporting our services and providing them for those who need our help. A monthly contribution helps to plan the future of MS-UK, and to develop the services that the community needs so much. Whether it’s access to the helpline or the ongoing e-learning courses to support professionals and raise awareness of multiple sclerosis, your membership to the MS-UK Supporters’ Club makes all of these worthy ventures possible.

Build the future of MS-UK

MS-UK is a national, independent charity that relies on donations and fundraising to fund our counselling, helpline and online services. Without this, we wouldn’t be able to offer the support needed. By regularly donating, you’ll be having a direct impact on the progression of MS-UK and the variety of available services.

Increase availability of services

By becoming part of the MS-UK Supporters’ Club you’ll be helping us secure the availability of the services we already offer. Earlier this year, the counselling service had to stop taking referrals due to the high demand for this specialist and one-of-a-kind offering throughout the UK. One counselling session costs £50, so your membership to the MS-UK Supporters’ Club will help secure the availability of services such as this.

Contract-free

We understand that everyone is in a different financial position and that this can change. Your donation can be changed or cancelled at any time to reflect the amount that you’re able to give. Whether you donate £2 or £10 a month, we’re incredibly thankful for everyone’s donations to MS-UK and delighted to have you join #TeamPurple and the Supporters’ Club.

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When you join the MS-UK Supporters’ Club, you’ll receive a thank you letter from us, and you’ll be kept in the loop with the latest updates from the charity to see how your donation has made a difference. If you’re unable to support MS-UK financially, why not become a Community Champion or join our Virtual Insight Panel? Every single volunteer, fundraiser and donor makes a huge difference to people living with MS and others that are affected by the life-long condition.

Join #TeamPurple this International Day of Charity

Posted on: September 03 2021

To celebrate International Day of Charity on 05 September, we’ve put together a blog to let you know all the different ways that you can contribute to MS-UK and support the vital work that we do for people affected by multiple sclerosis (MS). aled and enlli.png

International Day of Charity was established by the United Nations to encourage people all around the world to help others ‘through volunteer and philanthropic activities’. To learn more about this global celebration of charities and the objective behind International Day of Charity, click here.

There’s several different ways that you can support MS-UK, and we’d love to have you involved in any way that you can and become a part of #TeamPurple. Our fundraising events are a great way to achieve something amazing for a good cause whilst creating memories that last a lifetime.

From the Virgin Money London Marathon, the Three Peaks Challenge, National Skydive Day and everything in between, all of our fundraisers’ efforts are hugely appreciated and make an enormous difference. If you’d like to learn more about how you can fundraise for MS-UK click here, or contact our Fundraising team today who will support you every step of the way!

If you choose to donate to MS-UK, there’s a variety of ways that you can do this. As an independent charity, we do not receive any government funding and rely on donations. By donating, you’ll be directly supporting people with MS to live happier and healthier lives and help improve our services. From our Helpline to the specialised MS counselling that MS-UK offers, and our huge range of online activities, there’s something for anyone who needs support.

Join our Supporters’ Club! purple-coin-logo.png

We’re so excited to launch our brand-new Supporters’ Club! It’s a wonderful way to support MS-UK and ensure that anyone affected by MS can access the help that they need today, tomorrow and in the future. A small monthly donation can make a huge difference. From as little as £5 a month, you can help someone’s mental and physical health, helping them to live a happier and healthier life.

To find out more and set up your membership to the MS-UK Supporters’ Club, click here.

Make a single donation

If you’d like to make a single donation to help maintain MS-UK’s services, you can do so by clicking here. Just £5 can fund a chair yoga session for one hour to help support someone’s mental and physical wellbeing.

Donate at no extra cost!

That’s right, you can donate to MS-UK at no extra cost to yourself. Pick MS-UK as your charity of choice on Amazon Smile or on Give As You Live. MS-UK receives donations every time you make qualifying purchases

Text donation

It’s really easy to donate via text to MS-UK, and it’s a convenient way donate on a one-off basis. Choose to give £5, £10 or £20 and you will be billed by your network provider. Find out more about how you can do this by clicking here.

Leave a legacy

Including a donation in your will to MS-UK can be a great way to ensure that future generations who live with MS get the support they need. To learn more about this, click here to access our downloadable information pack.

Win cash prizes! MAS PRIZES v3_RGB_MAR.png

By playing in the Make a Smile Lottery, you could win weekly cash prizes, all whilst supporting MS-UK and the people who need us most. You can set up a direct debit to take part each week or play as and when you like for just £1. Find out how you can get involved here.

If you’re unable to make a financial contribution to MS-UK but you would still like to be involved, there’s lots of different things you can do. Our Community Champions do important work within their local areas to raise funds by distributing donation pots. If you’re pressed for time on a regular basis, this is a wonderful way to support MS-UK.

Our events are back! Come and support #TeamPurple and become a part of the family by attending events. For more information on this, you can contact our Fundraising team today.

Without our fundraisers and volunteers, we couldn’t provide the services that we do at MS-UK. We appreciate every single one of our #TeamPurple family and the contribution that all of you have made to MS-UK. Thank you!

Meet Suzy, one of our #TeamPurple fundraisers

Posted on: September 02 2021

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. Susy Cohen blog photo .jpg

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.

Staying Smart

Posted on: September 01 2021

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’. iStock-1133898111.jpg

‘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

MS and fatigue - can training the brain help?

Posted on: August 31 2021

Finding treatments to help people with MS manage fatigue and the impact it has on their life

Authors Dr Alicia Hughes & Dominic Murrell

 

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:

  • poorer quality of life (4, 6)
  • increased depression (4, 6)
  • increased anxiety (4, 6)
  • poor cognition (4, 6)
  • poor sleep quality (4, 6)

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

  1. change how the brain deals with or processes information and
  2. whether training the brain in more flexible processing is helpful for people with fatigue.

Get involved

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

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To find out more please register your interest on the study website: www.flexproject.co.uk Picture2.png Picture3.png

Click here for reference list