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.
This 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.
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!
In 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.”
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.
“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!”
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
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.
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.
Dr 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.
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.
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.
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!
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!
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.
Virgin 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
I sold every date of the year for £2 each, with a great 1st, 2nd and 3rd cash prize!
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 friend
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
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!
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.
I 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
Mark 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.
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