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Thank you to our #TeamPurple runners who took part in the Great North Run!

Posted on: September 09 2019

Photos of MS-UK runners at the Great North RunHi everyone,

On Sunday I had the privilege of cheering on our amazing #TeamPurple runners at the Simplyhealth Great North Run!

The weather was warm (if a little windy!) as I joined crowds of well over 200,000 people lining the route of the run, right from Newcastle to South Shields. Over the whole weekend around 58,000 people took part in events, from the 5k run through to the Great Tees 10k, but I was there to support the amazing runners taking on the Great North Run in aid of MS-UK.

This was the first year I have travelled North to support #TeamPurple at the Great North Run and I was amazed at the dedication and energy of our runners. It was a brilliant atmosphere and I would like to say a big thank you to everyone who wore our purple running vests with pride.

Photos of runners at Great North Run at end of the raceEvery penny raised from this event helps us support even more people across the whole of the UK who may be living with multiple sclerosis (MS). One service we offer is being able to listen to people’s worries and concerns through the MS-UK Helpline and offer lots of information and support at times when it is really needed. Our amazing fundraisers make this possible.

The date for next year is already out – 13 September 2020 – so if you want to join #TeamPurple please get in touch with me to register your interest. I would love to be cheering you across the finish line at this unforgettable event next year!

Best wishes,

Jenny

Events Fundraiser, MS-UK

MSer Jan Clarke-Taplin gears up for this year’s Great North Run

Posted on: September 06 2019

DSC_0128.jpgHaving been diagnosed with multiple sclerosis (MS) in April 2018 I was scared and uncertain of my future. Faced with having to take daily meds and wondering if I was going to be able to walk soon let alone run, I decided to explore treatment options for MS.

With the support of my medical team, I embarked on the Best Bet diet, increased my exercise and started on several supplements. This routine has not only kept me in remission and healthy but I feel it has made me stronger. Post diagnosis I ran two half marathons in 2018 and then was lucky enough to join #TeamPurple in London and completed the London Marathon in April 2019 just one year after diagnosis. I ran for MS-UK because they have helped me with counselling and coming to terms with my MS diagnosis. Running for #TeamPurple also kept inspiring me, as I met so many runners who also have MS and keep going!

Running has become my medicine, I have learned when to push, when to rest and how to fuel my body and I am incredibly grateful to be able to remain mobile and strong. I don’t know if I will always stay like this and I would say I battle with my mental health too to stay positive and focussed. Being a part of #TeamPurple for MS-UK gives me focus and I am so proud to wear my purple running t-shirt with the MS-UK logo on. I feel I am giving back to a charity that has supported me through some tough times.

I was delighted and so excited to be offered a place on this year’s Great North Run team, the first time MS-UK has had a presence at the event. I also managed to recruit two friends Mollie and Beki, Beki who is running her first half marathon too! We are all super excited, our team of eight will meet up for the first time at the event (hopefully) and get a team photo. It is a first for all of us, so watch this space and see our post-race photo. Of course, raising funds for MS-UK is what it’s all about and on the eve of the race we have smashed our team target and we could not be happier! If you would like to donate, visit www.justgiving.com/fundraising/Janet-Taplin2.

Baseline testing day on the MS-STAT2 trial

Posted on: September 06 2019

Cathy Howard 2_0.pngMSer Cathy Howard updates us on the next stage of the statins trial

I was up with the lark again and even earlier than my last appointment! I got to UCL Queens Square Institute of Neurology almost an hour early, but I’d much rather be early than late.

A lovely nurse called Sarah took us through to the same area we were in last time and got me my second coffee of the day. She also gave me a Baseline worksheet with questions about how my MS currently affects me physically and mentally.

Dr Nevin John explained the day’s process, went through reams of paperwork with me and I signed five more informed consent forms for sub-studies. Don’t think of the trees!

Then the tests began. The Dr who administered those was very thorough and put me through a battery of sight, memory and manual dexterity tests, as well as a comprehensive neurological test. Records were taken after each part of each test.

I completed another walking test with a mobile phone with the MSteps app attached to my arm.

I had six lots of blood taken by another lovely nurse and a cannula inserted for contrast dye to be given part way through the lengthy MRI scan. I have some anxiety issues with MRIs so my GP kindly prescribed me diazepam as a sedative.

The last part of my day was 45 minutes of MRI scans. I estimate I had about 15 separate scans of varying durations. I was asked if I’d like some music whilst in the scanner, and I thought – well, I was an 80s teenager, so Madonna would be perfect. Although I couldn’t hear a lot of it whilst the bangs, clicks and dings were going on, when there were quieter periods, I was Vogueing (in my head) and being a strutting Material Girl! The technician who completed the scans will let me have a copy of the scan at my next appointment. Yay! It means I’ll be able to discuss it with my neurologist Dr Giles Elrington next time I see him. I haven’t had an MRI since my diagnosis, so I’m quite excited about that.

I was given my statin/placebo with a diary to keep updated. One tablet a night for a month. My next appointment is on 24 September. Bring it on!

Guest blog: Lydia from the MS Trust tells us about the new neurological toolkit

Posted on: August 29 2019

Image of doctors clipboard with penA new toolkit has been developed to help local health groups improve services for people living with progressive neurological conditions in England. The MS Trust was one of seven charities involved in developing the new guidance.

Lydia, communications officer at the MS Trust, explains more in this guest blog...

Healthcare services have been failing people with neurological conditions like multiple sclerosis (MS) for far too long. That’s a fact. The number of people living with neurological conditions in England is rising and will continue to increase. But, for a number of years now, neurology has not been a national priority for the NHS. Research shows that those living with progressive neurological conditions are experiencing delays in diagnosis and treatment, fragmented and uncoordinated services, limited availability of neuro-specialist rehab and reablement and a lack of psycho–social support. 

This inequality is simply not fair.

The NHS RightCare Toolkit for Progressive Neurological Conditions has been developed to help change that and ensure people living with brain and nerve conditions like MS, Parkinson’s and Motor Neurone Disease (MND) get the care and support they need and deserve.

Seven charities (MS Trust, MS Society, Parkinson’s UK, MND Association, Sue Ryder, MSA Trust and PSP Association) joined forces with NHS experts to produce the toolkit. The hope is that Clinical Commissioning Groups (CCGs)  will take full advantage of this unique opportunity; that they will use the practical, clear and innovative guidance the toolkit provides to tackle some of the big challenges people with these conditions face and ultimately improve healthcare services for this group, now and in the future.

If implemented in the right way, the numbers speak for themselves: up to 2,500 emergency admissions to hospital a year could be avoided for patients with these conditions as a result, with up to £10 million freed up to fund improved services.

So what does this mean for people with MS? The toolkit outlines four priorities that need addressing in MS care: improving the efficiency of disease modifying drug management, better use of data and technology to free up the valuable time of MS specialists, holistic support for people with advanced MS, and more MS specialists from different areas working together to provide joined-up care.

MS health professionals do an incredible job with the resources at their disposal and we know that many services are already delivering high quality care - the toolkit has real-life examples of best practice from across the country. But we want to help all areas reach the same high standard and make this best practice a reality for all. We will work closely with the other charities involved to support efforts to see the toolkit implemented effectively, with the shared aim of improving care for everyone living with a progressive neurological condition in England.

You can download the full NHS RightCare Progressive Neurological Conditions Toolkit from the NHS England website...

Visit the NHS England website

This blog is from the MS Trust...

This blog has kindly been written by the MS Trust. To find out more about them visit the MS Trust website or if you’re living with MS and would like to share your experiences of healthcare, please get in touch with the MS Trust at comms@mstrust.org.uk.

Fundraiser of the Month: 'I was so inspired'

Posted on: August 23 2019

Photo of Martin cycling at the eventIn this guest blog our August Fundraiser of the Month, Martin Crowe, tells us why he and his friend Gary Beck took on the capital at this year's Prudential RideLondon-Surrey 100...

Earlier this month, Gary Beck and I did the Prudential RideLondon-Surrey 100 event. My wife Diana is Head of Services for MS-UK and I went with her as a volunteer supporter at the Virgin Money London Marathon in April. I was so inspired by the experience that I wanted to do something myself. I didn't think I had a marathon in me but when I heard that I could support the charity with a 100 mile bike ride I signed up immediately. I work with Gary and when I told him I'd signed up he said he'd do it too!

Photo of Martin and GaryThe most interesting thing about all the training (and there was lots of training!) was that you get to see all sorts of things on a bike that you don't see from a car. I've nearly run over dozens of pheasants, seen stoats and weasels, a buzzard that nested at one of my stopping places, foxes and deer and I've even seen a snake for the first ever time in this country. I can also guarantee that potholes are worse on a bike than they are in a car!

Gary was responsible for a lot of the fundraising and he managed to twist the arms of a lot of people at his golf club. I have to say a big thank you to the Colne Valley Golf Club Swindle Members who raised over £250 between them. I also have to thank my employer, Gallagher, which has a charity commitment to double anything it's people raise. Thanks Gallagher! That's my main tip - a lot of companies will match any funds raised by their employees so it's always a good idea to ask. 

Perhaps the funniest thing to share is that I've broken my vow never to wear Lycra. I can't say I'll be rushing to buy any more Lycra gear but it did the job on the day.

I thoroughly enjoyed this event. I enjoy cycling but I've never done anything like 100 miles before. The only thing I'd really say is that if you fancy doing something like this but aren't sure if you can do it then have faith, you'll be surprised at what you can do.

Visit Martin's fundraising page to read more

Feeling inspired?

We have places in #TeamPurple for the Prudential RideLondon-Surrey 100 2020! A lasting legacy of the 2012 London Olympic and Paralympic Games, this event sees more than 25,000 cyclists take on 100 miles from Queen Elizabeth Olympic Park, through the city and onto Surrey's stunning country roads and the Surrey Hills before the brilliant finish on The Mall in central London. Could you be one of them? Every penny you raise will help MS-UK support even more people affected by multiple sclerosis (MS). 

Find out more about RideLondon

"I’m taking part in the MS-STAT2 trial, follow my journey"

Posted on: August 22 2019

Cathy Howard 2.pngHi, I’m Cathy Howard, I’m 51 and have secondary progressive multiple sclerosis (MS). I was originally diagnosed with relapsing remitting MS in 1998 at the age of 30 and I later took ill-health retirement from work in early 2015.

I use two sticks to walk short distances, or a wheelchair or scooter if I’m going out. I applied for the Simvastatin trial as I was conscious that apart from some fundraising for MS Society and MS-UK over the years, I’ve never really done a great deal for others with multiple sclerosis (MS).

The MS-STAT2 trial is a double-blind study, which means that I don’t know whether I’ll be taking Simvastatin or a placebo, and neither do the Drs who administer and regulate it. To be honest, although it would be a bonus to me if I took the drug and it worked, I’ll be happy just participating. I will be sharing my experience of participating in the trial through regular blog posts on the MS-UK blog, so watch this space!

Today is my screening day appointment (19 August 2019). I got up ridiculously early because my husband John was stressed about us getting the train with booked assistance for me in my wheelchair. Bleary-eyed we head out to the station. I was eager for my first coffee of the day.

The train was on time and we got to UCL Queen Square Institute of Neurology in London about 45 minutes early. Dr Tom Williams, MS Clinical Research Fellow, came to meet us and escorted us through the rabbit warren of corridors to the trial room. Here I had my second cup of coffee and I’m started to feel awake.

Tom introduced Dr Nevin John, MS Medical Clinical Research Fellow, who is also part of the study. Nevin advised me about the trial, what to expect and possible side effects of statins. He asked me questions, completed forms based on my replies, and requested for me initial consent forms. There is so much paperwork and record-keeping involved!

I then had a basic physical examination, including blood pressure and blood oxygen levels, and my heart and breathing listened too. My height and weight were checked and I had various vials of blood taken for testing.

I also agreed to take part in a brain oxygen study and mSteps smartphone analysis. I was wired up to the brain oxygen study machine and computer and baseline readings were taken. Then I had three separate minutes to say as many words as I can that start with a selected letter. Not as easy as you may think! From the problems I had, I expect I’ve got very little oxygen reaching my brain!

An app is being developed to accurately record walking distance and speed etc. I had a mobile phone with the app on it strapped to my arm and was asked to walk short distances. This also served for the walking part of the MS-STAT2 screening process.

All in all, it was a very interesting appointment. I was completely exhausted by the time I got home but felt like I’d actually done something productive and I’m smiling as I write this! This is it for now, but I’ll update you all on the next part of my journey very soon!

Guest blog: 9 anti-inflammatory foods

Posted on: August 20 2019

Photo of Sharon PeckMultiple sclerosis is an inflammatory condition. Here MSer and Nutrition Scientist Sharon Peck highlights just some foods that could help reduce inflammation...  

Inflammation is essential to our survival. It’s our first line of defence against the outside world. It attracts cells of the immune system to the site of danger to destroy pathogens and helps heal injury. As a short-lived response it performs excellently as protector and healer. 

In multiple sclerosis (MS) inflammation is ongoing (chronic), with the myelin covering being attached by neurons wrongly identified as pathogens. The immune system attacks pathogens with oxidation. The oxidative damage causes further inflammation.

An unhealthy gut microbiome can be a source of inflammation. Boston researchers found MSer’s microbiome linked to ongoing inflammation. Luckily the microbiome is easily changed with food choices that nourish the microbiome.

Foods described below can have anti-inflammatory effects, either directly helping to resolve inflammation/oxidative stress, or indirectly by feeding our microbiome so anti-inflammatory microbes crowd out pro-inflammatory ones. 

Champion foods (both direct and indirect effect)

1. Vegetables

Particularly rich dark, leafy greens contain polyphenols and antioxidants, which can directly reduce inflammation. Vegetable’s high fibre content feeds the microbiome. A small Italian trial found a high vegetable diet reduced inflammation, improved gut microbiome and helping to improve overall health.

2. Fruits

Especially deeply coloured berries, which are potent antioxidants that can reduce inflammation. They also provide food for the microbiome, helping to keep your gut healthy. Try and make sure you are getting your 5-a-day, and aim for 10 if you can, after the NHS recently reported that 10 portions of fruit and vegetables is even better for us.

Direct anti-inflammatory/antioxidant

3. Oily fish 

Mackerel, salmon and sardines are all sources of essential fatty acids (EFAs) omega-3s, which UK researcher found increased anti-inflammatory bacteria in the microbiome and may help directly resolve inflammation.

4. Nuts

These are a source of required omega-6 EFA, which can be inflammatory in excess. Walnuts have a balance of omega-6 and omega-3, and research has shown they promote anti-inflammatory microbes. Research found that walnut oil reduced inflammation in a mouse model of MS.

5. Seeds

Another great source of EFAs. Some seeds, such as flax and chia seeds have a high anti-inflammatory omega-3 content.

6. Extra-virgin olive oil 

Extra-virgin olive oil is a source of antioxidant vitamin E and anti-inflammatory polyphenols. A review of multiple trials indicated that this oil could improve inflammatory disease symptoms. 

7. Ginger

Ginger has well known anti-inflammatory properties. An Iranian researcher indicated it may reduce inflammation in mice with experimental autoimmune encephalomyelitis (EAE).

8. Turmeric

It’s been in the news a lot recently and is now well known for its anti-inflammatory properties, but it has poor absorption. Consume it with healthy fats and black pepper to improve the absorption.

Indirect effect via the microbiota

9. Legumes and wholegrains

Another good source of fibre which has been found to benefit gut microbiota.

Out of the above list seven constitute the Mediterranean diet. Interestingly, the Mediterranean diet is very similar to the high vegetable diet used in the Italian study mentioned in point one. It showed an anti-inflammatory effect in MSers and reduced disability. The anti-inflammatory Mediterranean diet is being looked at by a variety of experts and particularly for people with MS. 

About Sharon

Sharon was diagnosed with multiple sclerosis in 2007 and prompted a career change to nutrition with the goal of empowering people to take positive steps toward feeling better. Sharon aims to share her nutritional knowledge, the latest nutritional and lifestyle research and expertise from healthcare professionals. Visit Sharon’s website for more information about her and her latest articles.

Want to read more like this?

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Guest blog: Preparing for your first open water swim

Posted on: August 15 2019

Photo of Laura MayToday's guest blog is from Laura May, our Communications Manager, who is taking on the Swim Serpentine this Autumn with #TeamPurple. This is Laura's first ever open water swim, so here she shares some of her 'newbie swimmer' top tips...

Last year I went along to the Swim Serpentine to cheer on our amazing supporters as they took part - I was blown away. The festival atmosphere and the fantastic efforts of all the swimmers really inspired me. 

As a rule, I'm not one for sporting activities. Last time I did some fundraising for MS-UK I sat in a bath of baked beans - it didn't exactly need high levels of fitness! But that was some years ago and I felt it was time for a new challenge so I decided to take on the Swim Serpentine this year. As I work at MS-UK, I know that every penny makes a real difference to people affected by multiple sclerosis (MS). I also get to meet people affected by this condition in lots of different ways and I am always so in awe of people who live life to the full with MS. It feels great to give something back by fundraising, but also it feels great personally to take on something new. 

However, it's not all plain sailing when you take the plunge, so here are my top tips for new open water swimmers...

  • Accessorise, accessorise, accessorise. You need a swimming hat, ear plugs and goggles to get you started. I actually went and got some prescription goggles from my opticians which are excellent. If you struggle with the cold, swimming gloves and socks are a must. When you go for your first open water swim, remember to take flip flops too...the drive home for me with soggy trainers was not pleasant!
  • Don't just stick to the pool. It's really important to try swimming in the open water before the big event arrives. I found it so different swimming outside, with tides and wind and rain all round you. It's actually lovely being out in the open air, but more importantly it will prepare you for the big day when all sorts of nice creatures and plants will be touching you!
  • Photo of legsMake sure your wetsuit fits. I learnt this the hard way by purchasing a wet suit a size bigger that I needed. It meant I was really chaffed on the back of my legs when it bunched up - check out the photo to see just how bad it was!
  • Ask other people to encourage you. I found it really hard to get motivated to actually go out and swim. But I spoke with the MS-UK fundraising team who said 'you can do it' and who gave me a massive cheer the day after I swam my first one mile in open water. My partner keeps suggesting I go for a swim and it helps me motivate myself to leave the comfort of my sofa. My friends and family and colleagues all keep pushing me as the event draws ever closer and I feel excited to go out swimming because I know I'm raising so much for MS-UK
  • Listen to the experts. MS-UK have been brilliant at directing swimmers to local coaches, open water venues and top tips. At first I was reluctant to be told 'how to swim' but I have now learnt that all the advice is worth listening to and you can take what you need and leave what you don't

There are so many more tips that other swimmers could share, but here's my top five. For everyone taking on the Swim Serpentine this year, good luck and I will see you there.

Just keep swimming!

Laura 

Visit Laura's fundraising page to read her whole story

Last two places left in the Swim Serpentine!

Posted on: August 07 2019

Photo of swimming man at Swim Serpentine 2019Hi everyone,

We have just two spots left in #TeamPurple for this year's amazing Swim Serpentine event - do you fancy taking the plunge?

On Saturday 21 September the annual Swim Serpentine will be held at Hyde Park in London. It’s a one-day open water swimming festival where many swimmers will take part and raise money for charities - and you could take on the challenge for MS-UK!

Not only is it the same location as the open water swimming competition that was held in the London 2012 Olympics, there is an array of amenities that will help the brave swimmers through the two mile swim. These include a dunk zone, heated changing rooms, hot tubs and a pontoon start and finish.

With over 6,000 people diving into the challenge last year, we can only expect more success in 2019.

To register, just complete our online application form or give me a call on 01206 226500 to have a chat. You can also email me if you like, I'm always here to help.

Until September, just keep swimming!

Best wishes,

Jenny

Events Fundraiser, MS-UK

Apply today!

Daughter 10 takes on triathlon

Posted on: August 06 2019

Lizzie Selby.jpgMummy hasn’t been very well recently, and she has had lots of symptoms like the ones people with multiple sclerosis (MS) get. After she found out more about MS, Mummy thought it would be a nice idea for me to fundraise, and we chose to fundraise for MS-UK.

I took part in the UK Kids Fun Triathlon York on Saturday 13 July. First, I had to swim 75 meters (three lengths of the pool), then I cycled 3km and finally, I ran 1,400 meters. This was the first triathlon I’ve ever done and it was lots of fun. I trained as hard as I could for it and everyone was so proud of me when I had finished. Mummy was with me on the day and she helped me a lot in the transition area.

Lizzie Selby raised £260 for MS-UK and every single penny will go towards helping those affected by MS. If you would like to do something to support MS-UK, then get in touch with Lucy today! Simply email Lucy@ms-uk.org or call 01206 226500.

Well done #TeamPurple!

Posted on: August 05 2019

DSC01199.jpgYesterday 40 cyclists took on the Prudential RideLondon in support of MS-UK. It was a great day and the sun was certainly shining!

Most of our team members were new to the event and everyone loved taking on the infamous Box and Leith hills as they made their way along the course.

Commenting on his experience of taking part in this year’s race, Jonathan Pike said, ‘Riding the ‘Pru 100’ was one of the best experiences of my life. It was challenging but rewarding in equal measure. I am happy with finishing it incident-free but even more happy to have broken my personal fundraising target for such a great cause.’

Henry Phillips who also participated said, ‘Working with MS-UK has been an absolute pleasure from the moment we signed up. The MS-UK team make the experience a lot of fun by regularly catching up with us while training and also creating a community feel with other #TeamPurple participants. And to cap it all off the ride went amazingly well and we managed to smash our fundraising target in the process!’

MS-UK Community Fundraiser Lucy headed up the cheer point at mile 99.5, with the support of some of our brilliant volunteers. All of them were amazingly energetic the whole day, supporting every rider that came past including of course #TeamPurple and making it a memorable experience for all who took part.

Sarah Russell, a volunteer, said, ‘It was such a great experience. A fantastic opportunity to be loud and proud for #TeamPurple and the rest of the cyclists.’

MS-UK Events Fundraiser Jenny said, ‘I would like to say a huge thank you to all the team for their hard work in training for and completing this challenge. The team has so far raised over £14,000. MS-UK is here for anyone affected by multiple sclerosis, to empower them to live healthier and happier lives by improving the understanding of MS and providing support where it is needed most. The funds raised from this event will go a long way in helping MS-UK to achieve this.’

Has this event inspired you to dust off your bike and go for a ride? The date for next year’s Prudential RideLondon-Surrey 100 will shortly be announced, so do get in touch with Jenny to register your interest. Simply email jenny@ms-uk.org or call 01206 226500.

Guest blog: 'It’s all for a great cause...'

Posted on: August 02 2019

Photo of David with his Dad
Dad and me

In this guest blog, David lets us know why he and his partner Anne-Marie are taking on the challenge of the Prudential RideLondon-Surrey 100 this weekend, and the incredible journey they have been on to get to this point...

I made a promise to my dad twenty years ago that one day I would do a charity event and raise money for multiple sclerosis (MS). My dad is 83 and had relapsing-remitting MS for 40 years and I have seen first-hand how this disease not only affects the person but also the family. 

So, after twenty years of procrastinating, my partner Anne-Marie and I decided to finally hold true to my word. I was already in the RideLondon-100 so we looked at MS charities for Anne-Marie. Thankfully we spoke to Jenny at MS-UK who was enthusiastic and welcoming and that sealed our decision.

I know a lot of people use charity places as a way of getting into an event they wanted to do anyway but if there was one bit of advice I could ever give someone, it would be to pick a charity that means something to you.

For all those rainy days you don’t feel like training, for all the times your bum hurts (even with a litre of chamois cream slapped over it), for all those times you are halfway up a steep hill wondering why you aren’t slouched on the couch chowing down on popcorn, knowing why you are putting yourself through this makes such a difference to your resolve and dedication.

Training went well until one sunny May afternoon, I had a collision with a car whilst out cycling. The end result was a road closure, ambulance, two police cars, a suspected broken leg, injured back and hand, stitches in the chin and my bike was written off.

Subsequent x-rays and MRIs to my hand and leg miraculously showed nothing broken. By sheer chance, the angle of my knee prevented a far more serious long term knee injury occurring so I feel incredibly lucky.

Nevertheless, I was told I would be on crutches for up to 10 weeks and that all cycle events would be out until September. 

This was devasting for both myself and Anne-Marie.

To put this into perspective, Anne-Marie is not a confident cyclist. She has never ridden on her own so the thought of her cycling 100 miles solo scared her to death. 

She continued to train on an indoor bike in the gym but only for an hour at a time which wouldn’t be enough to get her in shape for a 100 mile ride outside.

She also suffered far more than me after my accident. My damage was physical but Anne-Marie’s was mental. From a lack of sleep due to nightmares leaving her exhausted, from having to be my carer for five weeks leaving little time for the bike, to seeing her partner in almost constant pain, her confidence plummeted.

But this is where choosing a charity that means something to you is so important. Despite all her fears, she knew she wouldn’t pull out. It was too important a promise to go back on.

Anne-Marie after the Tour of Cambridge (first solo ride).jpg
Anne-Marie after the Tour of Cambridge (first solo ride)

After a few weeks of mental turmoil, she made a last-minute decision to try the Tour of Cambridge on her own. A massive feat for her and one I am so proud of her for.

In the meantime, I had been rehabbing for up to two hours a day. I developed a huge admiration for people like my dad who, because of their MS, have to ‘rehab’ every day just to keep mobile and functioning. 

I remember the first day I managed to do a full revolution of a pedal stroke in the gym. It took me 10 minutes to get my leg over the top of the pedal stroke and it felt amazing. Within a week I managed five minutes on an indoor bike. A week later I double that time to 10 minutes and a week later I tried 20 minutes. Each time I felt exhausted and despite the Physio telling me there was no way I would get to the start line of the RideLondon, the prospect of being there with all the other MS-UK riders really made me want to give it a shot.

Despite everyone telling me not to overdo it, I cautiously overdid it and increased my longest ride from 20 miles to 25 to 35 to 53 to 70 miles on subsequent sessions with Anne-Marie always by my side.

At the end of each ride, I felt exhausted and would fall asleep in a sweaty mess.

So here we are today. My max longest ride will have been 70 miles. I don’t feel ready for the event, my hand still hurts but I’ll give it a jolly good bash. I can honestly say if it wasn’t for the importance of the charity, I wouldn’t have tried anyway near as hard on the rehab. Anne-Marie would have certainly dropped out of the event too but she feels a connection to the charity through me and my family. 

Both of us on our first sportive ride since the accident.jpg
Both of us on our first sportive ride since the accident

Seeing the effort families put in to helping their loved ones, seeing the effort those suffering from MS put into daily life means that you can’t help but feel motivated and inspired to put that little bit more into your own daily life.

For those who are reading this who are doing the event, I look forward to seeing you on the start line. I also look forward to seeing you (hopefully) at the finish line.

It’s all for a great cause and the journey has been unexpectedly up and down but also an amazing growing experience for both of us.

Good luck everyone and go #TeamPurple!

David Bint and Anne–Marie Cannon

Visit Anne-Marie's fundraising page

Self-esteem and MS - Part 3

Posted on: August 01 2019

Louise Willis (Headshot).jpgIn the final part of our self-esteem trilogy, MS-UK Counsellor Louise Willis offers some more empowering tips for good mental health...

Try mindfulness

Mindfulness is a bit of a buzzword and that is for good reason. With practice, mindfulness can change the way our brains work and instill a sense of calm. Far from its roots in traditional Buddhist practice, mindfulness of today is about taking your focus out from the past which we can’t change and the future which is yet to happen and putting it firmly in the present. This can be done in a number of ways from focusing on the body to the external senses.

Forgive others and ourselves

Holding on to grudges and past hurts has been likened to ‘putting your hand into a fire but expecting it to burn the other person’. It might feel like the right thing to do, but what does it really accomplish? Forgiveness is surprisingly seldom about the other person but about the feelings and beliefs that we carry with us from the precipitating event. Forgiveness is a private decision and it is not necessary to tell the other person that we have forgiven them. Of course, forgiveness of the self is just as important, as feelings of shame can be overwhelming, we are human after all and everyone makes mistakes.

Use positive affirmations

It’s easy to fall into a rut of negative talk, but by changing the wording it can have a transformative effect on how we feel about ourselves. Remember that coach from school or any other supportive and encouraging role model you have had the joy of spending time with? Be your own cheerleader – ‘you can do it, you are worthy and you are loveable’.

Set small goals and complete them

By setting ourselves small achievable goals throughout the week we can begin to see that we can do the things we set our minds to. Whether it is finishing that book, learning to crochet, phoning an old friend or putting time aside for self-care, it shows ourselves and others that we care for and value ourselves.

Keep a gratefulness journal

Log three things you are grateful for every other day, they don’t have to be big things. A smile from the lady in the newsagents, a bird on the windowsill or simply an hour of your favourite TV show. By feeling and acknowledging the small moments in our life that we often take for granted, we can start to build a more accurate model of what our life is really like rather than focusing on the negative parts.

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Missed the last two blogs? Read them today...

Read self-esteem and MS part 1

Read self-esteem and MS part 2

Guest blog: 100 kilometres with family in mind

Posted on: July 31 2019

In this guest blog, Pete Ashton, 24 from Lincoln, describes completing the Action Peak District Challenge with two of his close friends all in aid of MS-UK...

Myself and two close friends completed the Action Peak District Challenge, a run covering 100 Kilometres (62.5 miles) 2450 metres of elevation (Ben Nevis is 1,354m). The route took us through a tough and varied figure of eight loop around Peak District National Park. With none of us having attempted a challenge anywhere near this distance, we were entering completely uncharted territory. However,18 hours 17 minutes and 41 seconds after departing Bakewell showground we crossed the finish line. Out of a field of over 600 runners, 508 completed the continuous challenge, we ended up finishing 68th.Photo of Pete with his friends at the finish line

My Mum and Uncle were diagnosed over 10 years ago and over this time I have watched how horrible multiple sclerosis (MS) can be. Over that time the treatments have got much better however the unpredictably of symptoms occurring has remained. When deciding to use this challenge to fundraise my first thought was to find a charity that helps people with MS.

Before this challenge I had never ran more than 15 miles. I had no idea how to train to run over 4 times that, and working away from home made training difficult at times. Before the challenge started I knew it was going to be more of a mental battle than a physical one, to mute that little voice telling you to give up.

Having completed the first 52Km with no major problems and feeling confident we headed off after grabbing some lunch feeling really optimistic. Almost immediately after setting off I hit my biggest obstacle. At the 54Km mark whilst descending a steep hill, I started to feel a shooting pain in my left knee, which as the miles went on got worse and worse. The pain and discomfort escalated and became a gruelling mental battle to carry on and at a prolonged slower pace. Dealing with the frustration of not being able to run and watching as people we had overtaken hours ago now overtaking us was hard to take, we had out worked them and a freak injury meant they were now in front. At the time it seemed very unfair. At that point I also felt a massive burden to the other two guys who could of carried on running. However later they too came up against their own injuries which together we worked through.

This was my first time fundraising. I have learnt a lot of lessons. Everything revolves around social media, get posts out often, start fundraising well in advance, Have information for how to donate on you at all times to give people, lots of times in conversation people expressed an interest in donating but I didn’t have the link at hand to give them.

I attempted this challenge predominantly for selfish reasons – I wanted to know if I could do it, if I could raise some money for a good cause at the same time that was a bonus. However the lessons I have learnt from the experience are far more than that of physical endurance.

The key take away lesson from this experience for me was that we always have more in the tank than we think, and it is often the support given from others which allowed us to see it. Me, Louis and Ryan were able to achieve as a collective something that would of been beyond us as individuals. And I think that really underpins the importance of the work done by charities like MS-UK, because that support really does make a monumental difference in what we can all achieve.

Want to take on your own challenge?

Get in touch! Call Lucy on 01206 226500 or email Lucy today.

MS-UK volunteer wins reward for his efforts

Posted on: July 29 2019

IMG_2185.jpgLongstanding volunteer Nigel Watts has been recognised for his contribution volunteering for MS-UK.

Room to Reward, a unique charity created to give something back to those volunteers who do so much for so many, selected Nigel as the recipient of an overnight hotel stay of his choice.

Room to Reward enables registered charities to give something back to inspirational individuals with a well-earned break at no cost to themselves.

The charity partners with hotels across the UK who donate their anticipated unsold rooms to the scheme. Charities are then invited to nominate their Hidden Heroes for a one or two night, bed and breakfast, complimentary break to enjoy with a friend or loved one.

MS-UK General Manager, Sarah Wright, said: “On behalf of MS-UK I would like to thank Nigel for volunteering with us. He has volunteered in multiple departments across the charity, completed set tasks to a high standard and is always willing to help. He really has helped us make a real difference to people affected by multiple sclerosis.”

At a presentation, which took place at MS-UK’s wellness centre Josephs Court, Nigel said: “I’m surprised and pleased that an exterior body had recognised my volunteering efforts. The reward will come in useful when my wife, son and I go visiting my daughter and grandsons, as I have to stay in a hotel nearby for accessibility reasons.”