Mindfulness expert Anna Wille shares advice
For more information please visit www.annawille.com
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!”
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
John 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.
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.
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.
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.
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
We 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:
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.
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.
I 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.
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.
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.
Wellness coach and Director of Work.Live.Thrive Zoe Flint, discusses what you can do to boost relaxation which can help boost your immune and central nervous systems
The first thing to do is to prioritise relaxation as an essential part of your health. My experience of delivering mindfulness courses for MS-UK, has shown me that very few clients typically think of themselves first. The vast majority are far more concerned about their family and friends than their own wellbeing. Whilst this is a lovely quality, “you can’t pour from an empty cup”, as they say. In order to be there for friends and family, we must prioritise our own wellbeing. There are many practices you can try, and below are my top recommendations for beginning to develop your relaxation practice. Give each a try and see which you enjoy most, set yourself some time daily to practice (like learning a musical instrument, learning a relaxation practice takes motivation, determination and regular practice, enabling your brain to physically rewire itself and prime your mind and body to be able to habitually slip into states of relaxation).
Probably the most important and effective way to induce the relaxation response, setting time aside to breathe slowly, deeply, and extending the out breath has remarkable effects at reducing stress, anxiety and panic
Try it - Breathe in slowly, filling the lungs completely to a count of 5. Breathe out, slowly and completely, to a count of 7. Repeat until you feel a noticeable sense of relaxation. Struggling? Download ‘Breath2Relax’ at the App store.
2. Learn Mindfulness
Mindfulness is a brain training meditation practice that originated in Buddhism 2,000 years ago. There is a wealth of research into its effectiveness at reducing stress and anxiety, increasing focus, reducing pain, boosting the immune system, reducing fatigue and increasing a sense of acceptance. There are also studies specific to MS that show a decrease in symptoms.
Try it - Sit comfortably, in an upright position. The aim is to be relaxed but alert. Start by taking a few slow, deep breaths, letting go of any thoughts of worry, lamenting or busyness. Spend a few moments focusing on the sensations of breathing. Feel the air as it enters your nose; the temperature, the quality. Focus on its journey down into the lungs. The movement of the body and rib cage as you inhale and exhale. Notice the change in temperature of the breathe as you exhale. Struggling? Download the Apps ‘Calm’ or ‘Insight Timer’.
3. Progressive Muscle Relaxation
In addition to producing a feeling of calmness and relaxation, this technique helps you to notice areas of the body where tension is held and can ease headaches, muscle stiffness and bring a fresh supply of blood to important muscles.
Try it - Start with your feet and work up towards your head. Scrunch up your toes, hold, and release. Flex your feet, hold, point your toes, hold, and relax. Squeeze your calf muscles, release. Squeeze your thighs, relax. Attempt to pull your tummy button towards your back. Hold, and release. Squeeze your shoulders up to your ears, hold. Let go. Make fists with your hands, tense them tightly, hold, release. Clench your jaw, hold and relax. Sit for a few moments, absorbing the benefits of the practice. Struggling? Search ‘Progressive Muscle Relaxation’ on YouTube.
4. Visualisation Techniques
Where’s the place you find the most relaxing? A beach, a walled garden, a meadow, a lagoon? Wherever it is, you can go there in your mind.
Try it – Imagine the most relaxing place you can, using all your senses – what would you smell, hear, see and feel? Warm sun on your face, birdsong, cool, soothing water or soft grass under your feet? Let your imagination go wild and spend some time each day in your relaxing place. Struggling? Search YouTube for ‘guided relaxations’.
5. Fun and Laughter
So good for our immune systems and wellbeing in general, fun and laughter are often little prioritised in our busy lives. What makes you laugh? Can you make a list of films, podcasts, friends, activities and books that make you laugh out loud? Laughter released pain relieving endorphins and helps us bond with others.
Try it – Use your list to do something daily that you find fun and induces laughter. Struggling? Try a laughter yoga class!
As soon as I found out I had a place on #TeamPurple in the Virgin Money London Marathon 2020, I started telling everyone, and I mean everyone!
Setting up a JustGiving page makes sharing your fundraising story so easy. As soon as I had mine set up, I shared the link with friends, family, work colleagues, clients and suppliers at work, even the WhatsApp group that all the neighbours in my building are part of.
Spreading the excitement
Being passionate and truly caring about the cause you are running for is infectious. People feel it and get behind you because of it. Don’t worry about boring people, or get wrapped up in what they think about what you’re doing, as that’s not a productive use of your time and energy.
As well as donations from friends and family, I sold teams on a football scratch card. If you search ‘football scratch card’ on Amazon you can buy a pack of 10 for £3. I sold each team for £10, with £200 to go to the winner and £200 for MS-UK. I timed it to be drawn just before Christmas which I think helped get the squares sold. I’ll definitely be doing another card pre-race day.
I have also been in touch with my local community manager at Tesco to organise bag packing. I’ll be pushing for Easter weekend so that the shop will be a bit busier, and it’s not long before the race itself! I have linked up with a couple of other runners near me so that we can take this on together and have more of a presence in-store.
Running for my mum
My mum had secondary progressive multiple sclerosis. Her left leg was worst affected, making walking a daily struggle.
She would often fall in public and be left humiliated and, of course, in pain.
In September 2013, she was admitted to hospital for an unrelated skin infection. On discharge she was largely bed bound as her MS became increasingly aggressive, spurred on by a weakened immune system. A combination of all of the above led to her suffering a pulmonary embolism and passing away on 26/09/13. I don’t need to tell anyone how hard losing a parent is. I am completely and utterly lost without my mum and, even six years on, it’s as rubbish as it was then!
I was too young, selfish and naïve to take control of the situation for mum. I want to run the London 2020 Marathon in memory of her and to raise funds for MS UK to be able to help others with MS because of this. MS is misunderstood, it affects everyone differently and is completely unpredictable. I want to play my part in changing this.
My top tips
If you’re training for a big run, get started on your fundraising as soon as you can so you can smash it out of the park early and focus on training
Talk to everyone about it. It will connect you with people in a way you would never have imagined.
Use social media. I’m documenting my training on Instagram (@healthylivinglisa_). It’s an amazing tool to get chatting to other runners and widen your network even further.
Get yourself into the Facebook group and connect with other MS-UK runners. There are also a few London Marathon Facebook groups with thousands of people to chat to and get tips from.
Not everyone has this opportunity, certainly not those that are badly affected with MS, so it’s important to recognise how much of a privilege we all have to be part of #TeamPurple and what an honour it is to spread awareness and take this challenge on.
Multiple sclerosis blogger and influencer Martin Baum reflects on life with MS
There’s little doubt that much has changed since I was first diagnosed with multiple sclerosis (MS) back in the 80s. Today there’s more information, recognition and understanding but what does that really mean to any newly diagnosed young person? Well, if my journey through an illness with more twists and turns than the Hampton Court maze is anything to go by, not a lot.
What I still remember at the inception of diagnosis was how my mother, with the best of intentions, inadvertently began the process of putting my life on hold. She was always concerned about what might happen. My aunt, her sister, had MS. She was in a wheelchair which only added to the fear of an uncertain future for her son.
A negative ‘what if’ mindset was being formed and it was scary. Yet despite all her worst-case scenarios it took over thirty years for me to reach the secondary progressive stage of MS and writing this blog, has given me pause for thought all these years on.
A fundamental issue I have with MS is that it’s easy to forget what we can still ‘do’ and what we are able to achieve. The older we get the harder it can be to get on with life because sometimes MS makes simple tasks more difficult. But as far as it goes, the newly diagnosed youngster needs to be reminded that they are still essentially the same person as they were before being labelled.
There’s a line from Tashauna, a song by the Rossington Collins Band that goes ‘if you believe that you are weak, then weak you'll surely be’. A friend played me the song years ago at a time I was struggling with my diagnosis – it wasn’t the first time and it wasn’t to be the last where I felt I was out of my depth - but that lyric has stayed with me almost as long MS has.
Just because the worst-case could happen, it doesn’t necessarily mean that it will. Having MS is like climbing Mount Everest. Not everyone reaches the summit. For others who are at relapsing remitting, secondary progressive and primary progressive base camps it’s anyone’s guess how far up the mountain they’ll ascend. But until then, until you get there or if you get there, the only advice I would offer to any young person is this – it’s better to live a life, not MS.