'In 2016, I was diagnosed with progressive multiple sclerosis (MS) and decided to find out more about MS-UK’s wellness centre, Josephs Court, especially when it really began to affect my balance. I visited weekly and have found the welcoming atmosphere really helpful to me, especially with things such as discussing treatments, and getting ideas and tips for coping.
'Before my diagnosis, I played table tennis to county level as an under 17 and took qualifications to become a swimming teacher. In my youth, I even became a lifeguard with the Guildford Lifeguards. Many years later I joined a gym with my middle daughter Naomi, and we used to go several times a week.
'Alongside this, we also used to cycle to the school I was teaching in and where Naomi was also a teaching assistant. It really was downhill all the way to school, but uphill all the way back. Naomi was able to cycle all the way home, but I had to walk and push my bike for some of the way. Then in 2007, I moved to Great Totham so cycling to work was no longer an option, just an 80 mile round trip to school and back.
'After diagnosis however, my exercise regime was affected, and I didn’t think that exercise would work for me as it used to. My balance was going and I could no longer ride my bike as a result. I even tried stabilisers, but I continued falling off. Subsequently, I started going to Josephs Court and at first, I couldn’t really see the point of it. I could still walk even though my balance was shaky. However, I kept going and then soon realised just how much I needed what Josephs Court could offer and help me with.
'Following this, I ordered an adult tricycle, and was amazed when I was able to get on and ride it straight away, albeit not very far to begin with. But now two and a half years later, I’m able to ride 4.5 miles most days around my home village of Roxwell. I sometimes book myself in for a six week course of hydrotherapy. I think the feeling of being able to walk across the pool with no sticks or rollator is amazing.
'Because of what services there are for those diagnosed with MS, I can’t value exercise highly enough. I have always been competitive, so Josephs Court and tricycling gave me this challenge.'
'I was inspired to run for MS-UK by my Aunt Karen who was diagnosed with relapsing remitting multiple sclerosis (RRMS) in 2012. Despite how much of a change her diagnosis has brought to her life and the daily challenges it now presents to her, I find myself in awe with how she hasn’t let it hold her back. I was drawn to MS-UK in particular due to the great services they offer to those affected, such as the helpline, counselling service and wellness centre facility. Services like these were so valuable and essential to helping my aunt, so raising money to ensure they are provided to others who need them means a lot.
'The main challenge I faced when I found out I had a charity place last June was that I had never run before and it didn’t come very naturally to me. My main support came through joining a local running group, which has really helped me through the winter training runs and longer runs recently.
'To fundraise for MS-UK I utilised my job as a Makeup Artist in order to hold a luxury beauty raffle. I was very lucky to be gifted items after asking various colleagues for contributions to the prizes. I managed to gather together enough items for three large prizes and decided to sell tickets for £5 each. I posted about the raffle on social media, as well as my local running group’s Facebook page. I sold 109 tickets and raised a total of £545. After the success and popularity of the first raffle I’m looking to hold a second one!
'Make sure to put yourself out there, whether it be on social media or in your work place. I’ve posted regular updates of my training onto Facebook and Instagram to let people know about my progression and to let them know about why I’m running for MS-UK. Also not being afraid to reach out to local businesses or friends to see if they would be willing to donate items as prizes, if you decide to do a raffle. I was really overwhelmed by people’s generosity, so it’s always worth asking!
'I feel extremely lucky and proud to be able to run the London Marathon for my aunt and to be able to raise money for MS-UK. I’ve recently completed my longest training run (20 miles), which I never could have imagined myself doing! Knowing I’m running for such a great cause has really helped to motivate and keep me going with my training, and although I’m nervous, I can’t wait for start-line of the marathon!'
I started supporting MS-UK in 2014 when my running buddy and I decided to participate in a running challenge of three marathons in three weeks, with London being the finale of the trio. Having missed out on the ballot we were given the chance of a place with MS-UK, which was a good fit because I’ve had relapsing remitting multiple sclerosis since my late 30s. I was immediately hooked and have been fundraising for the last five years now. I’ve raised a total of £16,372.20 so far!
This year will be my fifth marathon, all of which were charity bond places with MS-UK. Each marathon has been special in its own way; two have been with my buddy Debbie Germain, one was with my husband, last year I ran with my daughter and this year I will be by myself. The trio of marathons was an epic challenge though and a very proud moment.
Without a doubt the end of the race is very special, you are treated like a superstar by the charity and they look after you as though you have just won the gold medal.
When it’s come to raising the funds for each race I’ve organised lots of different events. I have done a quiz night a few times, various raffles, I had race entries donated for me to auction, as well as a private run coaching session with Shane Benzie.
I organise a yearly Halloween and Christmas 5k night run around Greenham Common Air Base, a fantastic spectacle of lights moving around the Common in the pitch black with medals, hot soup or mulled wine at the end.
I have a Rock and Roll Bingo evening next month where you have to guess snippets of songs and cross off bingo numbers, which should be fun.
One of my more notorious fundraisers was with my buddy Debbie. We produced a Naked Runners Calendar, with 12 of our male running friends all tastefully photographed by our photographer friend, they all have appropriately placed props of course! The calendar sold for £10 and proved to be very popular.
I’d definitely encourage anyone who’s been thinking about supporting MS-UK to give them a call. They will support you just as much as you support them.
Next week will mark MS Awareness Week 2019. This year we’re very excited to be working alongside the MS Trust and the National MS Therapy Centres to raise awareness of the benefits of exercise.
We have developed a free booklet all about exercise which includes some seated exercises to help you get started. We hope you find this useful and it includes first-hand quotes from other people who have been in your position - people who can truly understand and empathise with your feelings about exercise.
The MS-UK Helpline team
Another instalment as I am taken by the train to the hallowed turf that is Hammersmith Hospital. This began with an early start at 4.45am. I know, a clock should only see this once a day. Teeth were brushed, the shower was jumped in, the beard was conditioned to an inch of its life, as it has gone really dry and coarse of late. It is feeling soft once again, albeit the purple has faded somewhat. I'll probably colour it again, but will definitely do so before the Chemo in May. Mostly so the dust pan gets to look good as it is swept up.
I am now sat on the train thinking about the need to get home in good time later today, to take the prescribed pills and the magic jab juice. I have been doing all this much closer to lunch time anyway, so I have another 6 hours, give or take before it might affect my current time scales.
As far as the side effects go, I do consider myself lucky as I am taking anti sick pills, with no sickness noted. I must say I have only been taking twice a day as opposed to the instructed three times as advised. If I had the slightest inkling of feeling sick, then I would certainly be taking them as instructed. I was told about the joint aches and pains, at the beginning too. Again this gas been kind too, don't get me wrong, if I am out pottering about town, as I was yesterday treating myself to some new jeans and a shirt. (Pandas breed more frequently than I buy new clothes by the way).
Today I am feeling aches in my left hip, my lower back and my left eye again. I assume the hip and back are from the drugs, as I was informed would be the case, by Naghma, the well informed Nurse at Hammersmith, but the left eye is blind anyway, so as long as is isn't too bad, I'll not worry about it. If it was my good right eye, then it would have my full attention and I'd pop in to hospital about it.
Peterborough hospital eye clinic have always been pretty good at squeezing me in at short notice when needed. I try not to bother them unless I am getting genuinely worried about my right eye. Either way, all the aches and pains are dealt with using paracetamol.
Well, that was close. The silence on the train woke me up...phew! God knows where I might have ended up.
Once awake, and back on my stumbley clumsy feet, I took the usual walk to the Victoria line down stairs on the far side of Kings Cross station, then get off at Oxford Circus, to get on the Central line, looking for White City. From there I get on either the No 72, or the 272 bus towards Hammersmith Hospital. All was so very smooth today in my getting here. I will say though, that I really do need to get some paracetamol. My lower back doesn't half ache. Maybe a combination of the walking a fair bit over the last few days, and my being 4 days in to the stem cell generation, and the achy bones are to be expected.
From speaking to the Nursing staff here, I am now in the prime time for the aches to be really biting down. As the day is slowly moving on, yes, I can feel those aches. Do I sound like I am whinging yet?
My bloods have been taken by Nurse Harry and they have been sent off, as I sit here wondering where I can get those paracetamol tablets, on my way home.
Ok, so I fell asleep as the bloods were sent off, and was told they'd be ready after lunch, and with the time at 10.30 now, off I trot to central London for some nice food and to kill some time. I do pass a chemist, but meh! It'll be reet.
I eventually find myself in Selfridges food hall trying to eat ramen broth, but yes my right hand is still rubbish, so I am forced to eat the long stringy noodle goodness with chopsticks using my left hand. Actually I did well, and got away with it. Now back to Hammersmith, by now I am really flagging and my back is aching a lot more than I gave it credit for. It is, every now and then, a quiet groan-worthy amount of ache. I really regret not getting some paracetamol to scoff.
Eventually I get back to Hammersmith, to be told, all my bloods are exactly where they should be, and to come back on Monday for the big stem cell removal. So I say my thank yous to everyone and make my way home, thinking I knew a sly pocket full of paracetamol wouldn't go a miss right now.
I am on the train thinking, if the aches were anything to worry about, I would have bought some. I do see the aching bones as the Body telling me it is busy generating squillions of big fat juicy stem cells for me. You see, it might be super rubbish at running and tying my shoe laces at the moment, but it can spit out stem cells to order when it needs to. Thank you Body, you ain't that bad after all. Thank you X.
My cousin, Kevin was diagnosed with primary progressive multiple sclerosis (MS) in 2006. Kev was more like an older brother to me, he was someone to look up to and get into mischief with. Being two years older he always looked out for me and I got to wear his hand-me-down clothes - luckily I wasn’t much of a girly girl!
We were all shocked by his diagnosis; his initial complaint of optic neuritis hadn’t prepared us for what was to come. As a nurse I was aware of MS but more familiar with the relapse remitting form. His deterioration in health was rapid and devastating, for Kev and for all who loved him. Despite the many challenges he faced however, he never lost his sense of humour. He was truly a funny, humble and very loveable man.
Kev passed away last year, two days after his 46th birthday. I wanted to do something meaningful to help make sense of everything Kev went through, to remember him in a positive way and to help other families affected by MS. I feel very lucky to have the opportunity to run the London Marathon in his memory and I am looking forward to raising as much money as I possibly can for MS-UK.
I have two young daughters so when it came to fundraising I quickly realised that any fundraising activities were most likely going to involve them. Luckily they are involved in several clubs which have provided great links for raffles and donations.
My biggest fundraising event was a Purple Unicorn party! I had an idea to organise a children’s party and charge admission to raise money. Having organised parties for my own children on numerous occasions this felt like a safe, familiar and fun option. I contacted a party and events company, which I had used previously and had a long chat with the manager who was simply amazing! She suggested the purple unicorn theme as they already had a purple unicorn mascot (plus, who doesn’t love a purple unicorn?) she suggested using the “WeGotTickets” platform and she offered to do the party entertainment and advertising free of charge!
We set a date over the school holidays and I was able to book a function room for a discounted price as I mentioned the event was for charity. I organised a hot dog and candy floss machine, balloons for room decoration and glitter face painting which I paid for myself.
The WeGotTickets website was so easy to use, I decided on a ticket price of £10 per child with one adult going free per paying child. I advertised the event on Facebook and through my daughter’s school/nursery and the party company promoted it on Facebook, Instagram, and Twitter, plus they emailed the event details to their full client list. I managed to sell 40 tickets so raised £400 from ticket sales, the money was automatically credited to my bank account a week after the event.
In addition I organised a raffle, sold unicorn cupcakes, sweet cones and unicorn headbands. I held a guess the number of sweets in a jar competition and charged £1 donation for face painting. My final total raised was £656!
It wasn’t too difficult or time consuming to organise, I was very lucky to have such an amazing party company on board and they took a lot of the organisation and stress off my shoulders. Everyone thoroughly enjoyed the party, including me!
I am not a natural marathon runner; if my husband had to describe me in one word it would be ‘clumsy’! My journey to the Virgin Money London Marathon start line has been tough at times. I like to think Kev has been with me each step of the way, during good runs and bad runs. I know that the marathon will be an emotional day and I hope there will be plenty of tissues at the finish line!
If you would like to donate to Stephanie’s cause, visit her JustGiving page.
Today we have launched a new video all about our plans for the next three years. At MS-UK, we want to be truly community-led and we have developed our next strategy with this in mind.
Way back in February 2018 the whole charity agreed that we wanted to involve people affected by multiple sclerosis (MS) in a meaningful way. We were really keen to make sure we didn't just tick boxes, we wanted people affected by MS to share their insights and experiences with us and help us develop a way forward that makes a difference where it's needed most.
We asked the MS community 'what is the biggest difference we could make for you today?' And you answered...through attending focus groups, joining our Virtual Insight Panel, completing surveys and sending emails, you let us know what matters to you.
So, what are our priorities for the next three years? Watch or listen to our film today to find out!
You can also read our Strategic Plan for more information.
I am very excited about planning for a healthier and happier future, a future where we can improve understanding of MS and provide the support that is needed most. Thank you so much for all of your feedback over the past year, you have made this possible,
In January 2016 I had a very frightening experience when my eyesight in one eye deteriorated quite quickly to the extent that I wasn't able to continue my work as a dentist. Over the next year and numerous tests I was no further forward and my eye made some recovery. Following a second episode with my other eye in 2017 I had further scans and a lumbar puncture which finally led to the diagnosis of RRMS or relapsing remitting multiple sclerosis.
I started to learn about treatments, being a medic I was sure I would follow the disease modifying therapies (DMTs) or daily injections of immunosuppressants, but I was encouraged to try another approach. My own GP put me in touch with a friend of hers who had been managing his own MS through diet and exercise, Alan Caldwell. Alan was a great inspiration to me and when I first met him he had just successfully completed the Virgin Money London Marathon running for MS-UK. This was exactly what I needed to hear at this time, I was in shock with an MS diagnosis and scared for the future. As we know no one can yet predict the outcome of your MS and indeed, it affects everyone differently, so to know that Alan was doing so well following the Best Bet Diet, an exercise regime and supplements meant I was going to look at all this first.
I embarked on the Best Bet Diet which I thought would be so difficult at first, particularly cutting out all dairy and gluten but I did it and haven’t looked back. My neurology team have also been supportive of my choices which again is encouraging.
During all the uncertainty with my health and before I had received an MS diagnosis I decided to start running. I joined local Five Star Active group based in Auchterarder and puffed and panted my way through 2 minute runs!! I was a complete beginner and whilst an outdoorsy type I had never run before. I remember the elation I felt when eventually running one dark Friday night we realised we had run for 12 minutes non-stop!!
From there I ran a 5k then a 10k. With news in December 2017 that I may be facing MS I decided to sign up for a Half Marathon as I was terrified if I didn't do it then it may never happen. So in May 2018 a month after my confirmed diagnosis I proudly completed Loch Leven Half in 2 hrs 17 minutes.
During the rest of 2018 I tried to keep my miles up and my fitness level as I started to come to terms with having this chronic disease. I was learning (and still am) when to push my body, and when to rest, how to fuel and which foods keep me healthy.
I had dark days and towards the end of 2018 my GP suggested I needed some counselling which I have received both privately and from MS-UK. The services MS-UK provide have been a source of great help for me so I am therefore delighted to be able to raise funds for MS-UK.
I was dubious about entering the Virgin Money London Marathon as I was concerned it may be too much for my MS but I have gone from strength to strength over the last year, I don't know what the future holds, none of us do, but I run and keep as healthy as possible and stay in the moment as much as possible.
In January several of my running club buddies were starting their training for the London Marathon, we have nine from our club heading south for the run, and I thought if I’m going to do it, it’s now or never. I sent a message to Jenny at MS-UK to find out if there was a chance my waiting list place would come up and after a very excitable phone call, she offered me a place.
If I had a doubt about the marathon it was dispelled that day with my overwhelming excitement about it and also how delighted my friends, family and running buddies were too.
The training is so far on track, we have a wonderful coach who has put a great programme together for me. She knows about my MS and together we monitor it, she insists on two days rest after my long run and I never run consecutive days. Having other running buddies makes it easier to motivate yourself and the MS-UK runners have also been great, we interact in a Facebook group and follow each other on Strava.
I have some fundraising events planned but most of my target has been met from my initial post on Facebook sharing my story and my JustGiving page. I was overwhelmed by the amount of support I received. Many people did not know what I was going through and the messages I received when I finally told the world gave me a huge boost.
I am excited for London and delighted to be part of Team Purple, see you at the finish!!
Find out all about fundraising and becoming part of #TeamPurple on our website today!
What you might not know is that Scott has been living with multiple sclerosis (MS) for 13 years and after recently seeing a worsening in his condition applied and has been accepted for Haematopoietic stem cell transplantation (HSCT) treatment in London.
Scott has had a coveted career as an aircraft engineer in the Royal Air Force and was diagnosed with MS in 2006. With an MRI scan his neurologist identified that he has significant lesions to confirm he has MS.
He tried the disease modifying therapies approach and gave beta interferons a try, but they didn’t agree with him. So he decided to take the no-drug route for 13 years before his MS became more active in recent years.
Like many people’s HSCT stories, Scott didn’t know anything about the treatment until his wife found information online. He has since been accepted for HSCT treatment in London and wants to raise awareness and share his experience exclusively with MS-UK and its followers. This is the first of a number of vlogs Scott will be sharing with us, so please do follow his journey with us.
Scott thought it was important to express that he is no way an expert and MS affects everyone differently, but hopes that sharing his story will give everyone an idea of what’s involved in the process and what to expect. Please do share your thoughts and comments with Scott via our social media pages and his own @goggle_beard.
Caution: Please be aware that some of the language used in this video may cause offence.
2016 and 2017 was a momentous time for supermarkets here in the UK; ASDA, Sainsburys, Tesco, Waitrose and Morrisons announced they had removed the stigma of people with invisible illnesses from being called out for looking ‘normal’ when using their stores.
In an act of moving with the times, when the big five supermarkets specifically addressed the issue of hidden disabilities by displaying ‘not every disability is visible’ signs in their stores, I was greatly heartened to hear about this act of awareness.
And not a moment too soon. After all, from a personal perspective having to validate my MS to complete strangers has at times been humiliating, particularly whenever I’ve found a disabled parking space.
While not exactly a burning bush moment, by raising an awareness on their premises it was a positive step against discrimination. But then again, was it really something to celebrate or was it nothing more than a misguided publicity stunt?
Despite the desperate need for a parking space hidden disability awareness sign, shamefully I later discovered it was only Sainsburys who have displayed it beneath the wheelchair logo in their parking bays. As for the others, their nod towards helping people only extends as far as their accessible toilets.
Without wishing to sound ungrateful I’m at a loss to understand why both needs were not given equal consideration but then again, I have nothing to be grateful for. None of us do. Yet given all the free PR and advertising, the cynic in me questions what kind of tokenism was deemed more acceptable by supermarket focus groups.
If ASDA, Tesco, Waitrose and Morrisons can put up signs in their store toilets raising awareness of 'hidden disabilities' that doesn’t extend to parking, they clearly have no idea what going shopping is like for some with MS, faced with fear of confrontation outside on the superstore concourse.
Never more has supermarket lip service been so opportunist. They should be shamed, not celebrated, for their penny-pinching attempt for basking in gold-plated publicity. I can only assume they chose to do this because of cost. And yet all is not lost. Redemption is at their fingertips.
On Amazon, it’s possible to buy ‘not all disabilities are visible stickers’ to give away free to customers. The cost to them is less than £2 notwithstanding discount for a bulk order.
Every little helps, as they say.
If you would like any information about accessibility or parking, please email our helpline with your questions.