Skip to main content

MS-UK Blog

‘Running the Virgin Money London Marathon 2020 is my way of saying thank you!’

Posted on: March 06 2020

Kate C 1.jpgAs Kate Collins gears up for the Virgin Money London Marathon she shares why she is running and how she has reached her fundraising target!

‘Runnin’,’ by Naughty Boy ft. Beyoncé seems to be the soundtrack to describe my life right now! I am currently in the midst of training for the Virgin Money London Marathon 2020 and boy do my family and friends sure know it! All my daily chats now involve running-related topics such as; routes, ailments and the weather!

I started running from an early age, from runs in the park with my Dad and dog, representing the County a couple of times during secondary school for cross country, to running various amateur 10k and half marathon races. I have never been the best runner but I’ve always lived by the mantra ‘it’s the taking part that counts!’

My friends didn’t have much of interest in the sport when I was growing up and didn’t share my love of longingly watching the Virgin Money London Marathon take place wishing I was in and amongst the thousands of runners. What was once a dream is soon going to become a reality (hopefully!).

For the past three years, I have tried and failed at gaining a place for the London Marathon and swore this year would be my last time entering. I decided to try my chances at gaining a place through a charity this year and to my amazement, it worked!

As a teenager, I always said if I was ever lucky enough to run the Virgin Money London Marathon I would raise money for a multiple sclerosis (MS) charity. For over 25 years now my Mum has lived with MS. She does not allow this diagnosis to consume her life nor does she allow it to dictate what she can and cannot do. Instead, she tackles daily challenges with sheer determination and never uses her diagnosis as ‘an excuse.’ Her outlook on life is extremely positive and now, as a retired teacher, she continues to help others through volunteer work.

My Dad has been a constant rock from the time of diagnosis for my Mum and as a family, we would be lost without him. But alongside this Mum has received an unfathomable amount of support from NHS health care professionals, in particular MS nurses. Without support from these highly trained and skilled professionals, my Mum’s quality of life would not be what it is today. And so, running the Virgin Money London Marathon 2020 is my way of saying, “thank you” to all health care professionals who support and care for people living with MS.

I am currently in the 6th week of training for the marathon and it’s starting to hurt! Fortunately, I am extremely lucky to be running the marathon alongside my best friend who is also running for a charity that supports her mum. Having a training partner shares the load psychologically – if only it would also physically! The cold, stormy and dark nights and mornings do not entice us to train but we constantly keep reminding each other the reason why we are running and that’s all the determination we need.

Ironically, although training is hard, I am finding fundraising harder! Naturally, I am not an outspoken person and I try to blend into the background. This is the first time I am raising money for a charity solely on my own. At first, I completely shied away from the concept of having to ask people for money, hoping I would one day just open up my JustGiving page and there would miraculously be money donated into it without me having to ask anybody!

Initially, I just advertised my Just Giving with one post on my social media accounts (Facebook and Instagram), and I couldn’t believe how many donations came flooding in within the first couple of days. I was completely overwhelmed at how generous people were being just by adding a link to my pages but this also gave me the confidence boost needed to actually do some fundraising.

The first ‘event’ I held was a tea and coffee stall at my brother’s football team – ‘Dale Park Girls.’ This proved very popular on a very cold Saturday morning and is something I shall be doing again in the future. After that, I held a boot sale – being a complete novice I was not prepared for the early bargain hunters but once they heard I was donating all funds to MS-UK they were more generous with their offerings!

The following fundraising events I have undertaken I cannot take credit for as these have been organised by close friends and family of mine. They have all been unique in how they have helped me to raise money, from Father Christmas collecting donations for me in a café, a quiz night in a local pub and donation collecting at local pubs and clubs. Again, it is so amazing the love and support I have been given by friends and family and their wanting to help me raise money for MS-UK is incredible.

I still need to reach my target of £2,000 but I am not far off. I have a few more ideas up my sleeve such as holding a ‘colour run’ event at the school I work in and a possible football tournament. I’ll also give tea and coffee stall and a boot sale a go again – once the weather fairs up!

Never underestimate the power of social media though, for fundraising, this is the ultimate tool to connect you to people. As I am running with my friend we decided to document our training on Instagram (@sole_mate_runners). To document our journey but also connect with other runners and like-minded people. This page has only been up for a couple of weeks, however, we have both already received donations on out pages through it.

I’d like to take this opportunity to thank MS-UK for giving me a place on their team – it is the ultimate runner's prize running the Virgin Money London Marathon and it is something I am not taking for granted.  It will be an absolute honour wearing purple on the day to represent #TeamPurple and what a coincidence purple is my favourite colour! Good luck fellow runners and fundraisers!

If you would like to donate to Kate’s JustGiving page, visit www.justgiving.com/fundraising/kate-collins16.

We need your help

Posted on: March 06 2020

We’re crowdfunding to help improve the mental health of people living with multiple sclerosis (MS).

In 2017, we launched the only national telephone counselling for people with MS, and have delivered more than 2,000 sessions to more than 300 people. But with your donation, we can help even more people who are living with MS improve their mental health by providing video counselling. Our crowdfunding campaign is now live, click here to support us! https://www.avivacommunityfund.co.uk/ms-uk-counselling

Video counselling

We want to run a six-month trial of video counselling to help people with MS live happier, healthier lives. The MS community told us that while they find our telephone counselling very helpful, for some people, being able to talk to their counsellor would be even more beneficial as they would be able to maintain eye contact and read body language.

Here’s just some of the feedback we’ve had from people who have accessed our counselling service:

‘Counselling has helped me realise that it is okay to share my fears and worries with my partner. Being able to do this with you first really helped.’

This is an all-or-nothing campaign. If we don’t reach our target, we get nothing, your pledge will be refunded by Crowdfunder and this pilot will be delayed. It's a risky move but it's the best way to prove we have your support.

How else can I help?

If you've already donated (thanks!) or can't donate just now, there are other ways to support...

Tell the World 

If you love our idea please tell friends, family and anyone else you know! 

Sharing is Caring 

Every share on social media can raise around £20 so please share and help us reach our goal. A personal message will often lead to a donation!

Blog

If you write or blog we'd love it if you wrote about our project. If you have any questions do get in touch.  Please share what you write with us and tag us online – we are @MultipleSclerosisUK on Facebook, @MSUK6 on Twitter and multiplesclerosis_uk on Instagram.

How will I get an update down the line? 

Please sign up to our MS-UK fundraisers e-newsletter here

COVID-19 (coronavirus) update

Posted on: March 04 2020

We have received some calls to our helpline about the recent news of COVID-19 and concerns about the impact it may have for people with multiple sclerosis (MS).

There is limited information and advice available specifically relating to MS. If you have MS, the risk of developing the virus is the same as the general population. This risk is currently considered low in the UK.

Generally, this virus can cause more severe symptoms in people with weakened immune systems, older people, and those with long-term conditions like diabetes, cancer and chronic lung disease. Having MS does not mean your immune system is weakened.

However, some disease modifying drugs supress the immune system. These include Lemtrada, Ocrevus, Tysabri, Mavenclad and Gilenya. A side effect of these drugs is increased risk of infection.

Professor Gavin Giovannoni has written a blog post for the Barts MS blog which talks about the risk factors of these drugs in more detail. You can read more here:

https://multiple-sclerosis-research.org/2020/03/covid-19-and-dmts/

As with other health issues, such as flu, cold, bladder infection, or any other viral issues, you can have a temporary worsening of your MS symptoms. Symptoms will likely settle down once you have recovered from the infection/virus. 

Any concerns, we would suggest speaking with your MS team. As things stand it is not being recommended to stop and DMT treatment – always speak to a health professional in the first instance.

To avoid catching or spreading the virus, the advice from the NHS is as follows:

Do

  • wash your hands with soap and water often – do this for at least 20 seconds
  • always wash your hands when you get home or into work
  • use hand sanitiser gel if soap and water are not available
  • cover your mouth and nose with a tissue or your sleeve (not your hands) when you cough or sneeze
  • put used tissues in the bin straight away and wash your hands afterwards
  • try to avoid close contact with people who are unwell

Don't

  • do not touch your eyes, nose or mouth if your hands are not clean

If you would like to chat through any concerns our helpline is available Monday to Friday, 9am – 5pm. Call 0800 783 0518.

The Helpline team

The coronavirus and MS

Posted on: March 02 2020

brittany-colette--CDN2nTKfrA-unsplash.jpgThe recent outbreak of the coronavirus COVID-19 has reached the UK and the Government has advised everyone to take precautions to avoid catching and spreading the condition. 

What are the symptoms of COVID-19?

The symptoms of infection are having a cough, a high temperature, and shortness of breath which can lead to pneumonia.

Because this is a new strain of virus, experts say there is a lot we still don’t know about how it will affect people with multiple sclerosis (MS). What we do know is that if you use disease-modifying therapies, as many people with MS do, then you have a higher risk of complications from viral infections, as some DMTs change your immune system.

If you are worried, please talk to your health care practitioner who will be able to advice you on the best course of action.

Protecting against coronavirus

The World Health Organisation has provided the following advice for people to protect against COVID-19.

  • Wash your hands frequently with an alcohol-based hand rub or soap and water
  • When coughing and sneezing, cover your mouth and nose with a flexed elbow or tissue
  • Keep at least one meter distance between yourself and others, particularly those who are coughing and sneezing
  • Avoid touching eyes, nose and mouth
  • Practise food safety by using different chopping boards for raw meat and cooked foods and wash your hands between handling them

You should also avoid contact with anyone who has travelled recently to an area where the coronavirus has broken out. The World Health Organisation provides regular updates on cases around the world here https://www.who.int/emergencies/diseases/novel-coronavirus-2019/situation-reports/

In the UK, the medical advice is that if you have recently travelled from areas affected by coronavirus, or been in contact with someone who has, and developed flu like symptoms you should…

  • stay indoors and avoid contact with other people as you would with the flu
  • call NHS 111 to inform them of your symtpoms and they will advise you on what to do next

Well done to our Vitality Big Half runners!

Posted on: March 02 2020

Vitality Big Half MSUK-38.jpgYesterday, Sunday 01 March, 21 members of #TeamPurple took part in London’s Vitality Big Half Marathon. Runners gathered from all over the country to put themselves to the test and achieve their fundraising goals for MS-UK. Some even used this as a warm-up to the Virgin Money London Marathon, which will take place in April, and others did it just for fun!

The course started at London’s iconic Tower Hill and finished at the famous Cutty Sark. Once participants had successfully completed the half marathon they were invited to enjoy a festival put on by the event organisers. It boasted live music, street food and lots of fun for all of the family to enjoy.

Although there was the threat of storm Jorge the day turned out to be bright with blue skies and a brisk breeze, which definitely didn’t stop friends and family lining the course to cheer their loved ones on. Along the course, there was live music, including choirs and bands playing from different venues creating an amazing atmosphere.

Our cheer point in Rotherhithe was manged by our wonderful volunteers who shouted loud and proud for #TeamPurple. A big thank you to all of you, we just couldn’t deliver our #TeamPurple spirit without your brilliant support!

Those who have been fundraising for the event have so far raised £2,050 which is the equivalent of MS-UK being able to provide 41 counselling sessions to those affected by multiple sclerosis, so you really are making a difference. Thank you all for your amazing efforts!

We would also like to say a special thank you to Jonathan Dadds for his fantastic photography.  

Feeling inspired to take on a half marathon? MS-UK has places in two events later in the year, the Great North Run and Royal Parks Half Marathon. For more information, call Jenny on 01206 226500.

We were immensely proud to be able to use what we do for fun as an opportunity to raise money for such an important cause

Posted on: February 27 2020

Zebraphiles.JPG

The Zebraphiles first started raising money for MS-UK in 2018 thanks to our leader at the time Grace Catchpole. Her hard work and dedication to fundraising led to her deservedly being named MS-UK’s Fundraiser of the Month in February 2019.

The Zebraphiles are a university sketch comedy group, predominantly made up of medical and dental students. We write and perform sketches, songs and videos about university life, what it’s like training to work in the NHS, and anything else that makes us laugh. Each year we run our own show, perform at university events, and compete in an annual revue against other medical school comedy groups.

This year, we knew that we wanted to continue the tradition Grace had started and use our show as an opportunity to raise money for a cause close to our hearts. I contacted Lucy to let her know what we were planning to do and was overwhelmed by the support and encouragement I received. She sent us some banners that we were able to hang around the performance hall alongside information about MS-UK. We also managed to find the t-shirts Lucy sent us last year after a small search party was dispatched into the depths of the drama society’s props cupboard. With the cast working hard in rehearsals and our head of social media promoting the show around campus, preparations were well and truly underway.

On Friday 13th December, we performed our first ever two-act show to a sell-out audience! We donated £1 from each ticket and the bar staff were proudly wearing their MS-UK t-shirts, encouraging audience members to donate any spare change into the collection buckets around the hall. It was a fantastic evening for both the cast and audience!

We were immensely proud to be able to use what we do for fun as an opportunity to raise money for such an important cause.

What is restless leg syndrome?

Posted on: February 27 2020

restless.PNGThis symptom is highly prevalent among people living with multiple sclerosis 

Restless leg syndrome, also called Willis-Ekbom Disease, is described as an unpleasant or uncomfortable sensation in the legs along with an irresistible urge to move them. Symptoms can be described as aches, a feeling of pulling, itching or a sensation of bugs under the skin, tingling, tightness and electrical or jolting sensations. These symptoms commonly occur in the late afternoon or evening and tend to be more severe at night when you’re resting, such as sitting or lying in bed.

The condition can be disruptive to sleep and contribute to the overall fatigue, another common symptom that affects people with multiple sclerosis (MS).

Restless leg syndrome is thought to be highly prevalent among MS patients. One study, published in the journal PubMed revealed that among 156 MS patients, 51% met the criteria for restless leg syndrome based on neurological examination and medical interview.

What causes restless leg syndrome?

Research has identified specific genes related to restless legs syndrome, and it can run in families. According to NHS guidelines symptoms usually occur before the age of 40 in these cases.

There is also evidence to suggest restless leg syndrome is related to a problem with a part of the brain called basal ganglia, which uses a chemical (neurotransmitter) called dopamine to help control muscle activity and movement.

Dopamine and restless legs

Dopamine acts as a messenger between the brain and the nervous system to help the brain regulate and co-ordinate movement. If nerve cells become damaged, the amount of dopamine in the brain is reduced, which causes muscle spasms and involuntary movements.

Dopamine levels naturally fall towards the end of the day, which may explain why the symptoms of restless legs syndrome are often worse in the evening and during the night.

Restless leg syndrome can be a secondary condition that can occur as the result of a long term condition such as MS, but also if you have an iron deficiency. Low levels of iron in the blood can lead to a fall in dopamine, with can trigger restless legs.

In MSers restless leg syndrome can be related to abnormalities in neurotransmitters which help regulate muscle movements or the part of the central nervous system that controls automatic movements.

Treatment for restless legs

In the first instance, it is recommended that you should avoid caffeine, alcohol and nicotine, which are all thought to be triggers.

Regular daily exercise and a good sleep routine are also suggested treatments.

During a flare, you can try massaging your legs or taking a hot bath. Applying a hot or cold compress to your leg muscles, taking your mind off it by doing different activities to keep busy, such as reading or watching television. Relaxing exercises such as yoga and tai chi, or walking and stretching can also help provide relief.

Alternatively, there are a number of drugs that can be prescribed to help treat this unwanted symptom, such as Neurontin (gabapentin). This drug is used to treat neuropathic pain, a common symptom in people living with MS.

Benzodiazepines or benzodiazepine agonists, such as Valium (diazepam) and Klonopin (clonazepam) have been used with success in the past, but there is a risk that they can worsen fatigue. These particular drugs are used as a short term treatment because they can become addictive.

There are also medications that can increase dopamine in the brain, such as Requip (ropinirole) and Mirapex (pramipexole). If you are experiencing symptoms it is best to visit your GP or MS nurse who will be able to advise and treat you accordingly.

'My biggest inspiration for wanting to help MS-UK is my nephew Philip...'

Posted on: February 25 2020

Pauline Gauge.jpgC Sharp.jpg

This month, we at MS-UK are pleased to introduce our two newest Community Champions, sisters Pauline and Christine. Having witnessed the effects that multiple sclerosis (MS) has on a person and their family, Pauline and Christine have joined forces to fundraise for MS-UK without having to go out for a run!

‘With my marathon days being over, I decided to become a Community Champion for MS-UK,’ says Christine. “My sister Pauline and I have distributed the first of our collection pots around the local area, and look forward to collecting them in a few months!’ Christine was diagnosed with MS 25 years ago but considers herself very fortunate as her symptoms are ‘very mild’. No stranger to the condition, Christine has two cousins affected by MS and both her aunt and nephew (Pauline’s son) Philip passed away due to complications with MS. ‘My biggest inspiration for wanting to help MS-UK is my nephew Philip,’ she explains ‘Philip was an amazing man who, in spite of his disabilities, was determined to be as independent as possible and live life to the full. I never ever heard him moan or complain and he always made us laugh. I saw first-hand the challenges he faced after such a diagnosis and how MS-UK could be a huge support in such times.’

Pauline has also been inspired by her son Philip’s positive outlook on life, despite his MS diagnosis. ‘Phil was truly inspiring, his sense of humour and outrageous sense of fun made him a pleasure to be around,’ she says. ‘Eventually, Phil could not do anything for himself, just move his head to work the button for his computer, but he still kept his sense of humour... In spite of his disability, he didn’t want to die. One of his carers said to me that weekend that whenever we went to Phil’s, we could be having the worst day, and we would always come out smiling. We were all very proud of Phil. ‘Near the anniversary of Phil’s death each year, we hold a coffee day to raise money for MS-UK. Three years on I decided I would like to do more to help the charity. I could not commit on a regular basis, so becoming a Community Champion fits in perfectly with our lifestyle and it is great to talk to people in our local area about MS-UK.’

If you’re considering becoming a Community Champion and becoming part of the MS-UK family, get in touch with Lucy on 01206 226500 or Lucy@MS-UK.org to find out more!

  

Guest blog: “My animals help me cope with MS”

Posted on: February 20 2020

SAM_0032.JPGIn the latest issue of New Pathways, we look at the ways animals help people living with a long-term condition like MS. Here, one MSer tells us what her pets mean to her - read the rest of the article in the magazine.

“Having my animals means I have a responsibility to look after them,” explains MSer Ann Kerr. “I have to go out each and every day to them. I may not feel the same every day, but they don't know that, they need me. No matter how I feel in the morning, my animals are pleased to see me, and I always feel better for being with them. They don't comment if I'm a bit slower today, they accept me and are always pleased I'm there.

“I can, and do, spend all day with my animals, I never get bored, they are all different and all have different needs, but all of them give pleasure to me.” 

Living in Scotland, Anne says she has a determined streak that means she won’t let MS beat her. “I ignore it and get on with life,” she says. “A neurologist told me about the Ashton Embry Best Bet Diet and I’ve followed it ever since – I don’t take any medication. Having my animals keeps my mind busy and active – I still muck my horses out, and ride.”

Endurance riding

Anne took up riding as an adult, which she says is later in life than most keen riders, but was a natural and even took to endurance riding, covering vast distances on her pony, Tia. “Endurance riding is like orienteering on horseback – you are given a map and various check points and off you go.

“Tia came to me as a general riding pony, but we developed into a very good endurance riding team, doing distances of up to 50 miles at a time!”

Anne still has Tia, who has been with her around 18 years, and who she calls a “very good friend.” Also trotting around is Midge, a 37-year-old retired Shetland pony. “She came on loan from a friend to keep Tia company, and the friend has let her stay here as she is very happy with Tia,” explains Anne.

There’s also Saffie, a 10-year-old highland pony that Anne has had for four years. “She’s my youngster, a very gentle pony who follows you around like a puppy.” Saffie is the only pony Anne rides now. “I feel very safe riding her, and she adapts to whatever the rider requires. Due to mobility, I need to use a mounting block (a tall box which the rider stands on for ease in getting onto a horse) and she stands still and is very patient while I get on.

“Then there’s Bess, my 14-year-old collie-lab cross. She goes everywhere with us and again, is a very gentle girl. I’ve had her since she was tiny. I was riding Tia through a local farm when the farmer offered to show me the puppy he had left from a litter and it was love at first sight! She's never put a paw wrong since.

“Finally, I have Scoobie, a 12 year old ginger cat who came from the same farm that I got Bess from. I was then banned from going through that farm by my husband!

“They are all such good animals, so loving, well-behaved, calm and quiet, and they all come when they are called.”     

Keeping active with MS

It’s clear Anne deeply loves her animals, but they offer more than just love, they give her a purpose and something that takes her mind off of having MS. “The animals ensure that I'm active every day,” says Anne. “It might not always be the same level of activity, but I'm always active, always needed and always having to plan their wellbeing. SAM_0049.JPG

“They keep my mind active and focused because I have to plan what I'm going to be doing every day, what I'll need, for example, do I have everything the animals need in, or do I need to order feed, and so on. Physically I need to look after the stables on a daily basis, I groom ponies, I pick feet out, clear the fields, and that's just the horses – the cat and the dog also need to be looked after and exercised. There are no days off for me – not that that’s a problem!”

For those of you who didn't 'Meet the Experts', Jenny our Events Fundraiser fills you in

Posted on: February 14 2020

IMG_0368.png

If you didn’t attend the Virgin Money London Marathon ‘Meet the Experts’ event, our Events Fundraiser Jenny Poulter reveals you what you missed

On Saturday, Lucy and I went down to the Meet the Experts event organised by the Virgin Money London Marathon events team.

The day was broken into two-time slots with sessions in the morning and afternoon covering training, nutrition, fundraising and more. There was then a chance to visit the charities that had attended, have a sports massage, have your gait measured by New Balance and buy some new running gear! To see more on what was covered, visit www.virginmoneylondonmarathon.com/en-gb/event-info/meet-experts/.

It was also a great way to meet some of our #TeamPurple runners and catch up with you about your preparations for the big day.

Some of the points Lucy and I took from the talks were

Sustainability

The Virgin Money London Marathon is working really hard to become as sustainable as possible, and here are a few ways in which they are doing this.

  • Running numbers will now be printed on collection at the Virgin Money London Marathon Running Show, rather than being pre-printed
  • You will collect your post-race food at the Virgin Money London Marathon Running Show, rather than at the finish line of the race
  • Bottles on the course are 100% recyclable
  • There will be two stations of seaweed pods – Lucy and I tried one at the event and would recommend if you get the chance before the day to do the same to practice

Fundraising

  • Aim high, set your target higher and you will find it easier to reach your minimum sponsorship amount
  • It’s not just about reaching the minimum fundraising target, it's about challenging yourself to do amazing things
  • Be inspired by others around you and be proud of what you are doing
  • Get to know your charity so that you can confidently talk to people about the cause you are supporting

 

We’re hoping to get hold of the slides that were shown on the day to share with you all too. If you haven’t yet seen this video do take a look www.youtube.com/watch?v=VGBANm2xlhs – you will be part of this amazing event sharing its amazing milestone! It really will be one of the greatest days of your life!

Don’t forget we are on the end of the phone, so if you need any support from us just call us on 01206 226500.

IMG_0380.png

IMG_0373.png

“Something wasn’t right, but I kept putting it down to a bad day at work”

Posted on: February 12 2020

3_4.jpgDr James Carvell experienced a variety of symptoms that he put down to a lack of sleep or not eating well before meeting a neurologist and finally realising he has MS. 

MS-UK is based in Colchester where I grew up. It’s where I spent my school years playing sport, making lifelong friends and where I met my wife! We now live in London, where I am a doctor and we’ve recently welcomed our first baby – another life changing event!

Speaking of life changing days, my MS diagnosis came on 29 July 2016. Three years later I’m pleased to say I feel a lot more in control, but I vividly remember those early days.

Before my diagnosis, work, activity and day to day life were becoming more difficult. I was experiencing a real mix of symptoms that seemed unconnected. I had blurred vision (I thought this was because I refused to wear glasses), travel sickness (my driving?), I’d trip up whilst out running (lack of sleep following a night shift?), a heavy, painful leg (was it too much running?) and urinary problems (not sure about this one!).

Something wasn’t right, but I kept putting it down to a bad day at work or the fact I hadn’t slept well or hadn’t eaten well. I excused every symptom, yet at the same time, I couldn’t ignore them.

My diagnosis

Over those two years, I had my eyes checked by an optician, my leg checked by a physio, my heart checked by a cardiologist (my symptoms seemed to come on with exercise). I never put everything together until I met with a neurologist. After reeling off all my symptoms, everything clicked and I just knew, even before the MRI showing lesions and a lumbar puncture, which after talking with my neurologist again confirmed relapsing remitting MS.

I now have an infusion every month and yes, life has changed. But I have met some great people and sometimes its rubbish but a lot of the time it’s great and I am loving the journey! Over time it has made me realise the things that are important to me in life – my family, friends and my health.

Lifestyle changes

I have reduced external stressors by going less than full time at work, my wife Lianne has been so supportive in enabling me to do this. Sport always has and always will be hugely important to me. I keep up my cycling, swimming and gym time. Running is my biggest nemesis but I won’t give up on it! I think it is so important to talk to 

someone about how you are doing, whether friends, family, team mates, medical professionals, anyone!

Being diagnosed with MS makes you look back and think what did I do wrong? Was it that night I had too many drinks or that I hit my head playing rugby? I may never know. At some point, I stopped looking back and started looking at how I could help those in a similar situation to see that there are positives to be taken from MS, although it may not seem it at the time.

Making a difference

I wanted to do something to help people like me; those just diagnosed, scared of the future and worried whether they can carry on life as they knew it. I wanted to tell people that they can carry on. It makes you realise what is important to you and to focus on this.

So a year ago Lianne and I set up “Monkey Sox”. Monkey Sox is all about a monkey (with ginger hair, like me!) who lives with MS and wears Odd Sox! We design the socks to be odd to mirror how the body acts and feels different left to right for those living with MS. I experience most of my symptoms on my right side; right leg, right eye, right foot.

We started with a small number of socks, selling them to fundraise for the RideLondon 100 miles cycling event that coincided with my 2nd year of diagnosis. Now we’re selling Monkey Sox at markets, on our website and a few stores local to us in London. Monkey Sox is not-for-profit and we donate 50% net profits equally to 3 MS charities of which MS-UK is one, alongside the MS Society UK and MS Trust.

The future

We have exciting plans for Monkey Sox to grow and donate more and more each year to our charities! Through our Sports Sox we want to encourage an active lifestyle to improve the health of those with MS or not. You may have spotted some Monkey Sox on the streets at this year’s Colchester half marathon, London Asics 10K and Prudential RideLondon cycle. We have met many fantastic MS-UK supporters this year, many of whom are wearing Monkey Sox to train, race and relax in - thank you all!

Watch this space as we’re making a #TeamPurple sock just for MS-UK too and they will be revealed soon! 8.jpg

MS is a life-changing diagnosis, there is no denying that. But Monkey Sox has really helped me talk about MS positively, feel supported and in control. I hope that other people feel the same when they find out about Monkey Sox. Whether you are newly diagnosed, have been living with MS for years, or are the partner or friend of someone living with MS. I know that Monkey Sox makes talking about MS easier!

Lianne and I would love to meet more Monkey Sox friends, so feel free to get in touch. Find us on social media @monkeysox or visit our website www.monkeysox.org to order your socks.

I end with a huge thank you to the team and community at MS-UK. You are all fantastic, and you’ve made a big difference to me and Lianne in more ways than you know, and we know you will for years to come.

Guest Blog - 'Through my running and raising money for MS-UK I feel that I can make a difference'

Posted on: February 12 2020

A Rosenberg.pngVirgin Money London Marathon runner Alison Rosenberg shares her journey

I started running later in life, my challenge just prior to my 40th birthday was to be able to run a 5km park run without stopping! I completed a ‘walk to run’ course with Chase Life UK then proceeded to regularly take part in park runs, 10KM races and eventually a half marathon.

Early on in 2019 a very close friend was hospitalised with what was a severe acute episode, an Multiple Sclerosis (MS) diagnosis followed. My friend received this diagnosis and to be honest, none of my friends fully understood what MS meant or how it affects the individual, family and friends.

So, after three years of running I had thought about maybe taking part in a marathon but had never really had the time or motivation to commit myself to the training. I attended the Virgin Money London Marathon in 2019 as a spectator and on that day, I decided that it was my time to apply! My friend has had to deal with so much and I wanted to show my love and support by raising money for MS-UK. I mean, what better motivation is there, than to run for one of my greatest friends in the iconic London Marathon!

As soon as I was offered a place to run London, I started my fundraising. Initially my head was just full of ideas! I could barely sleep with the mix of excitement and nerves all at the same time! I found it useful to sit and write all my ideas down and to talk to friends about which ideas were the most practical and realistic.

Firstly, I set up my Just Giving page followed by my London Marathon Facebook page. Facebook has been a valuable tool for me to advertise my fundraising events and update my followers with my achievements.

Fundraising has been a challenge, but enjoyable and rewarding at the same time! Here are some of the main ideas that have helped me reach my initial target

  • Diary dates (raffle)

I sold every date of the year for £2 each, with a great 1st, 2nd and 3rd cash prize!

  • Body Shop and goodies hamper

My friend has an online Body Shop products page, she supported me with making a marvellous hamper. It had around £75 worth of products and goodies, including Pizza vouchers kindly donated by Domino’s. I attended a couple of Autumn Fayres with the hamper followed by a Body Shop party hosted by a friendA Rosenberg 4_0.png

  • Cake break

I arranged three separate cake breaks at work. I was very busy making cakes, but my work, family and friends all supported me and baked cakes too! These cakes breaks to my colleagues raised £250

  • Dog hamper raffle

I emailed and telephoned many companies to do with dogs and dog walking! I was totally blown away with the generosity of both small and large companies who donated over £500 worth of products to me. I have two Labradors myself, which only added to the excitement of the wonderful prizes on offer and I was able to share this with all my fellow dog walking friends!

  • “Guess how many sweets are in the bouquet"

A local sweet shop kindly donated a sweet bouquet worth £22. The owner of the shop counted the sweets and wrote the answer in a card for me so that nobody else knew the answer!

 

I have emailed and telephoned several companies over the last few months, asking if they would consider donating to my London Marathon fundraiser for MS-UK. Many companies have emailed back to explain that they are unable to support me due to other charitable works, however others have supported me with wonderful donations. I have been so grateful for each one of my donations, however big or small, each one has helped me push forward with my target.

At just £106 away from my £2,000 target I received a message from a local accounting company to inform me that they would like to donate the remaining money to get me to my target. I was overwhelmed and very happy to meet with one of the Directors to collect the cheque.

Since reaching target I have continued with my fundraising ideas and have received further items from larger brand companies. I am busy planning my final event which will take place in March, a craft and products sale at our local social club. I have organised for people to come and buy a table to be able to sell their products, while I will be running a Tombola and “Name the teddy” stall.

A Rosenberg 2.pngI am the type of person that likes to feel that I can be of some help, to try to make a difference. Through my running and raising money for MS-UK I feel that I can make a difference for my friend - along with many more individuals and families.

To date, I am at the 15-mile mark with my training, this is a huge personal achievement, but I know I still have a long way to go! My running friends have all signed up to the Virgin Money London Marathon as well. All 10 of us are training together and raising money for charity. My friend Rachel is running alongside me for MS-UK and is keeping very busy with her own fundraisers! We are all excited and nervous for race day, but between us we know we will make it and in the process, raise as much money for charity as possible!

If you would like to support Alison and follow her on her journey to the Virgin Money London Marathon, you can donate to her Justgiving page below

www.justgiving.com/fundraising/alison-rosenberg

Ain’t no mountain high enough

Posted on: February 10 2020

Mark Seabright.jpgMark Seabright’s challenge is to scale England’s highest mountain.

This whole thing started with a throw away comment from a colleague stating that they would like to walk the highest mountain in England, Scafell Pike, and before we knew it, we were pulling a team together and agreed that we should do the walk in aid of multiple sclerosis, as a few of us have friends who are diagnosed with the condition.

It didn’t take long for a date to be agreed and the digs booked. Then came the realisation that a few of us may need to get in some practice before the big day. The idea is to do one walk a month on varying terrain and varying lengths. This should allow each of the team to judge if they need to put in any extra training.

First attempt

The first practice walk took place on the morning of the 25 January when we decided to walk up a local landmark – The Wrekin in Shropshire. Not all ten of the team could make it due to other commitments. I have realised that I am certainly not in the great condition that I thought I was, and this walk came as quiet a surprise, with its incline beginning straight out of the car park and continuing all the way to the top. We completed the walk in 1hr 12mins, with a distance of 3.23 miles and an elevation of 778ft.

The next walk is planned for the 29 February. We have decided to do a longer distance, with less of an elevation over the hills near Church Stretton and we are hopeful that the more of the team can attend this one. We are out walking around the block in our lunch breaks and doing our own little bits of exercise when possible.

Our aim is to raise £500 for MS-UK, which we believe is a very deserving charity. MS-UK have been amazing, supplying branded t-shirts, a banner, and neck tubes along with kind encouragement and support.  

Want to support Mark and his friends? Head over to his JustGiving page http://www.justgiving.com/Julia-Preston3

If you would like to take on a challenge like Mark and his friends, please contact Lucy today on 01206 226500 or Lucy@ms-uk.org

"Running helps me beat fatigue"

Posted on: January 30 2020

JM-SM-Dubai.jpgJohn Mills tells us about his marathon motivation and how training helps him manage his MS

Here’s a quick introduction for those of you that don’t know me. My name’s John Mills and I’m going to be running the London Marathon for MS-UK this year.

I was delighted to be asked to blog on the run-up to the big race by the team at MS-UK. It’s a cause that’s very personal to me. The year 2017 was one of big changes. My wife gave birth to our beautiful daughter, I turned 30, and I was diagnosed with multiple sclerosis (MS).

In this blog, and further forthcoming ones, I will write about my journey and progress from the perspective of a runner, how my training is progressing and how my MS is in relation to this.

My motivation

I tried my hardest for over a year to ignore my diagnosis. I didn’t want MS to define who I was but, with the help of MS-UK, I have now realised that I can help define the condition instead, by raising awareness and promoting the fantastic work that MS-UK do.

Having already started fundraising, raising over £2,000 in a month, and meeting 20 or so #TeamPurple runners at a recent event means that there is now no turning back for me!

I am using the Nike Running Club (NRC) app for no other reason really than I have had it since 2013 and I know what to expect when using its training plans.

Royal Parks run

To get me off to the best start possible, I signed up for the Royal Parks Half Marathon. I am so pleased that I did. More than anything, I learnt what to expect come the 26 April 2020.

Here is what I took away from the day.

1. As silly as it sounds, 16,000 people is a lot to get across the start (and finish) line and that number will be doubled come April, which feels a little overwhelming. 

2. Headphones are not needed. You won’t need headphones come race day (for training they are a must, for me anyway) as there is so much more going on to keep you occupied other than a playlist; the sights of London, steel bands, marching bands and the incredible support. It’s amazing that someone who you have never met before shouting your name can put a smile on your face after just having ran 13 miles!

3. Try to at least roughly plan where your supporters will be beforehand as you will undoubtedly miss them, as I did, if you don’t know where they are. My first recommendation to anybody running the marathon for the first time is to try and get some race day experience so you know what to expect.  

My wife Sasha and I ran the Colchester half marathon for the MS Society back in 2016 because someone Sasha knows had been diagnosed with MS earlier that year. We raised £1,800 and, ironically, I had no idea that just a year later I’d be diagnosed myself.

Meditation

I’ve always enjoyed running, but even more so now, as for me it is a form of meditation. All I need to think about is putting one foot in front of the other – nothing else matters. You are only competing against yourself. I wanted to act now with regards to running a marathon because with MS you just don’t know if or when it will have a greater impact on your everyday life. MSUK royal parks half 2019-9.JPG

Running and, more specifically, training for the Royal Parks half marathon and now the London marathon is part of my daily routine. It may sound odd, but if I wasn’t running, fatigue would get the better of me and I would spend the rest of the day in bed.

Today is a perfect example of that. I find maintaining a routine is key and exercise forms a strong part of that. I’m told that there is science behind that, but I am by no means an expert. All I know is that it helps me.

My motivation

Training for the marathon is a great incentive for me to get out and maintain a certain level of fitness. After a run I get a sense of accomplishment and feel like I am beating MS one day at a time.

Currently I am not on any disease-modifying therapy for my MS, but I am due to start Ocrevus which works perfectly around training as it’s a six-monthly infusion. I take it as a sign that I am supposed to be running this marathon.

To sponsor John, visit his JustGiving page https://www.justgiving.com/fundraising/john-mills-msmyselfandi

“I was told to expect the worst I could imagine, and then some”

Posted on: January 27 2020

scoo.jpgWe catch up with former Gogglebox star Scott McCormick after he underwent HSCT treatment

On my second day in Hammersmith Hospital, my treatment began.

I had 1.5 litres of chemo drugs, followed by the 1.5 litre anti-thymocyte globulin (ATG) chaser. The ATG was far harder than the chemo – that much I will say. I had a lot of water retention that concerned the doctors. I was carrying 5kg more than usual, which meant I was holding five litres of excess fluid from the chemo and ATG infusions over the previous four days.

Immune system destroyed

At this point, my bloods were frequently checked. I was neutropenic [having a very low level of neutrophils, which are white blood cells that fight infection], with absolutely no immune system what so ever. This meant any everyday bug or virus now had the potential to really go to town on me.

This was not helped by the chemo and ATG making all the thin membranes in my body – from my gums to my rear exit – very thin, sore and swollen.

Preparing for HSCT

Here are some things I’d like to pass on to anyone due to undergo HSCT:

  • Get a soft toothbrush – it really helped with the aforementioned gum issues
  • Basic personal hygiene is key at this time. Even if you can’t be bothered, and are having to use a chair in the shower, you must. A good warm shower not only feels great, but it will wash the strong chemo smell from your skin
  • I'd also recommend to anyone about to undergo HSCT to get a soft, warm woolly hat, as my head was cold after I lost my hair, and I was seen wearing my pants on my head at night
  • Paying £20 for the high-speed internet to keep yourself occupied is another must. I tried to write back to every person who had taken the time to write to me during my treatment. As well as being polite, it was also self-serving by keeping me very busy for a lot of most days
  • Make sure you have a few sets of spare clothes with you (I’ll explain why in a minute). I just about got away with a set of three full changes of clothes. With retrospect, four or five or might have been wiser, but there is a washer and a dryer on the ward for all to use

I was so glad that chemo smell only lasted for a week or so. The memory of it will be with me for a long time, I think. It even put me off the deodorant I was using, as I was associating it with the smells. It was a cheap one I will never use again, as I had given this some thought before I went in for the HSCT. Everything was cheap and disposable, so I could bin it after I left hospital.sctt.jpg

Inevitable infections

At the point where I was neutropenic, I had been told by Nader, one of the brilliant nurses looking after me, that if I ever started to feel warm, I should tell someone immediately. Everyone gets a nasty infection at this stage.

So, as predicted, a couple of days after having no immunity at all, I sure enough felt warm, so I informed Nader who promptly checked my temperature and confirmed what was suspected.

He disappeared for a couple of minutes after telling me to go back to my bed. He came back with another two nurses and a tray full of strong intravenous antibiotics, and plugged them into me, with a bag being pumped into each arm simultaneously.

As this came to an end, I was asked to move off the bed, as things can become a bit soft in the bowels. As I stood, I can only describe what happened as a tap being turned on from the back end. I had no control what so ever and made a right mess.

I was told that this will happen to every person at this stage with the strong antibiotics. This made me feel a bit better, but it was so weird not having any control. I still had, before the antibiotics, some level of control of my bowels, even though my multiple sclerosis (MS) had been slowly eroding my sense of feeling and control of all things down there for some time.

So, be aware, this will be something all HSCT recipients will go through.

The treatment actually wasn't anywhere near as bad as I thought it was it going to be. Bearing in mind that the first day at Hammersmith hospital I was told to expect the worst I could imagine, and then some. I guess I can imagine some pretty dire situations, because neither the chemo nor the ATG took me there, although the ATG felt far worse than the chemo drugs.

Scott 9.JPGI was told by a friend’s wife, who knows how to put things into context for a squaddie, that chemo is like Domestos bleach to the body. That’s why they put in a peripherally inserted central catheter (PICC) line to the heart. The heavy thick artery walls are robust enough to take the chemo.

The chemo would take two to three hours to administer. The ATG took between 12 hours to 16 hours to administer the same volume of fluid. This does suggest the ATG is so very powerful, and the body can only take it slowly without it harming the individual.

My advice

If you are going to have HSCT treatment, a positive mental attitude will see you through it. You must remember you are in a country of 61 million people, and you are in one of the finest hospitals on the planet, with some of the best people, undergoing a well-rehearsed procedure. You will have passed through the strict entrance requirements to even be there in the first place. You are within reaching distance of a place where MS can no longer hurt you.

It’s worked

Fast forward six months, and I’ve had tests which have confirmed my HSCT treatment worked. I’ll try and explain this with the following analogy. I am a car, and MS is a thug that has smashed me up a bit. The thug has been taken away by the HSCT, but the car remains damaged. This is the simplest way I can explain it. The only downside is that the car might not fully repair itself, if at all. I have my fingers crossed, though. A positive mental attitude should keep me going, and I will have another MRI next October to check my MS has not returned.

For me in the short term, I will chip away to try to get strength back. I used to be a hands-on aircraft engineer, and there was nothing I couldn't do. I want it all back, and I want it yesterday.

Visit www.youtube.com/channel/UCMK3P_VOUfDtKU-JWkoeArg to follow Scott’s HSCT journey.