I have been living with multiple sclerosis (MS) for thirty-five years. In 2014 I noticed that walking was becoming more difficult and my MS nurse recommended that I contacted Josephs Court, MS-UK’s wellness centre in Colchester, Essex. I attended twice a week to exercise and became a founding member of their Steering Group. Before I was diagnosed with MS, I exercised every weekday walking for 10-15 minutes to the office where I worked in London. At lunchtime I would occasionally go for a 30 minute walk if the weather was kind, and this felt like it was a sufficient form of exercise. However I was unfortunately diagnosed with MS, but nevertheless I continued exercising in the same way for another 13 years until I eventually changed jobs in 1996. By then I commuted to Basildon by car – therefore my exercise regime came to an end.
But now, I visit Josephs Court two mornings a week, for 2-3 hours each time, and use most of the equipment available. I’ve also increased my exercise since the arrival of the latest university students, as one of them has given me some rigorous exercises using the parallel bars.
Now I feel that doing gentle exercise gives me a feeling of “getting one over on my MS” – it isn’t going to stop me from doing something that I enjoy, and there is a social aspect too. We are all suffering with the same disease label yet we don’t talk about it, we just enjoy one another’s company. The social aspect means I now have someone else to talk to, and shows that I needed something to relieve the boredom of not working, as I spent three years applying for jobs with no luck.
Finally, I thoroughly enjoying working with the student physiotherapist Becca, as she has brought new ways of exercising to me. I also find volunteering for MS-UK therapeutic – it is another reason for existing and gives me purpose.
'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!'
Earlier this week, Scott McCormick had his stem cells harvested for HSCT treatment at Hammersmith Hospital
Meet Eros! That’s the big old chunky machine next to me, a centrifuge in essence, which will be taking my blood and spinning it. As the image below shows, the heavy red blood cells, will separate and settle at the very bottom and just above is an amber, orangey band; these are the magical stem cells, which will be decanted off for use later. The top and majority is the plasma, the main carrier of the bloods components. Fascinating stuff.
This morning, when my blood results came back from the lab, they informed me that my stem cell count was very good at 3.13 million. I went to sleep in the room as they harvested the cells. Yay, a few ZZZZs!
Due to my count being a good one, my bones have let me know they have been working hard by aching quite a bit.
Eros was a good fella and did his job so very well. I found out that there are only three of these amazing machines at Hammersmith Hospital and cancer patients get higher priority, so that’s why there is a systemic bottle neck for HSCT treatment for MS patients. Seeing and hearing this really did make me aware of how lucky I am to have made it past the selection board.
And here they are. Have a look at that bag of freaking magic! Three million plus stem cells hot off the press, well my arm.
They have been confirmed as good to go and cryogenically frozen until my call back in a few weeks’ time.
To find out more about how this part of the treatment went and how Scott is feeling now, view his latest vlog here.
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.
This isn’t my first rodeo in the foray of fundraising so I wasn’t too worried about meeting my target, however I live on a different continent to a lot of my family, friends and support network. I didn’t want to just ask for straight up donations and therefore wanted to come up with something fun and inventive to do which didn’t involve people having to be present to raise money.
This year is a big bucket list year for me (hence signing up for my first marathon!), and whilst discussing said list’s items over lunch with the guys at work (I work for the Fire Department) I mentioned that I would shave my head for the right cause. The guys like any good brothers laughed and said they would pay good money to see that!! Sooo, I took them to their word.
This seemed like that perfect cause I’d been looking for, I’d made my decision. I set a target of half my fundraising goal, having two pub quiz nights planned in a couple of months, and set out on social media and by email to state my ‘hair brained’ plan; stating that the quicker I reached my goal the quicker it all comes off. I also said that the highest single donor would get to do the shaving!
I thought it might take around 3 weeks. Well within 10 days I had exceeded my target and it was still rising. It was going to happen quick. I decided the best spot for it to take place was at the fire station. I contacted the local newspaper to see if they were interested in coming to witness and take some photos, which they did. The winning donation came from one of my fellow volunteer Royal Canadian Marine Search and Rescue crewmates (the Canadian version of RNLI). I had a little wobble on the day thinking “what the heck am I doing?!” but once I sat in that chair and the clippers started buzzing it felt right. The newspaper article was great and I actually smashed my complete fundraising goal and raised over £3,000!
Multiple sclerosis (MS) has affected my family personally. My father was diagnosed with MS around 35 years ago. Back then there was very little support, information or treatments available. He and my mum were handed a trifold pamphlet and told ‘good luck’. Things have changed immensely now with the support offered by organisations such as MS-UK. The knowledge about MS, its effects, the research and treatments have improved greatly in recent years. The difference it makes to those diagnosed and their families now is what drove me to raise funds for this important cause. My father passed away a few years ago, but I know he would be proud of what I am doing.
Shaving your head is a big deal. Most of us hold a lot of our identity in our hair. I thought I would have a moment after the fact where I would look in the mirror and have a bit of a cry. I can happily state though that it hasn’t happened. I look in the mirror and feel satisfaction. It is weird, I can’t stop rubbing my hand over the fuzz I have now or trying to habitually ‘tuck’ my non-existent hair behind my ears. I was a hair twiddler so it’s not surprising; And I chuckle to myself when my hair causes a ‘Velcro’ effect with my clothes, or the couch, or my pillow, or my hats… lol. It’s surprising how much your hair keeps you warm, so I’ve got a lot of woolly hats (called toques in Canada). It’s hard to temperature regulate without the hair, so the hats come off and on, off and on. It took me a good week or so to feel confident being in public and whipping off that hat. But now I wear the shorn look with pride.
Top tips for other fundraisers...
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.
Meet the Physiotherapy students Julian Chamberlain-Carter and Rebecca Wilson who are currently completing their placement and supporting the team at MS-UK’s wellness centre Josephs Court, Colchester. They are both studying their Masters in Physiotherapy at the University of Essex. Over the course of their two-year degree they must complete six placements made up of five-week increments. They were specially selected to partake in this new emerging role which is a first of its kind both at the University, within Essex, and with ourselves at MS-UK.
Julian was born and bred in Colchester, England, he comes from a sporting background and has completed a degree in Rugby Coaching and Performance. His own personal experience and use of physiotherapy sparked his interest and aspiration to train to become a qualified physiotherapist. He wants to use his skills to help others with the care and rehabilitation they require. Julian has a keen interest in neurorehabilitation, particularly in Parkinson’s Disease and is currently completing his thesis in this specific area.
Rebecca is from Londonderry in Northern Ireland, she comes from a similar sporting background after completing a degree in Sports Therapy. Her interest of the human body and her personal experience with physiotherapy inspired her to carry out work experience and work with a local rugby club, which further affirmed her interest in pursuing physiotherapy as a career. Rebecca has previously supported MS-UK three years in a row at the Virgin Money London Marathon providing massage for those competing for the charity. Rebecca’s interest varies from physiotherapy to paediatrics, pelvic health and neurology.
Together they are both at Josephs Court using their physiotherapy skills and knowledge to develop an emerging role for physiotherapy in the future with MS-UK. Currently they are evaluating the service provision and developing new pathways for greater exercise, health and wellbeing benefits. These new pathways include treatment for foot-drop, gait training, upper limb function and balance. Alongside the physiotherapy specific exercise, advise and education, the students are learning about the various services that the charity has to offer and will be attending social events, such as coffee mornings, while undertaking their placement.
Through the placement the students are hoping to leave their mark by providing a sustainable service that clients can make use of. Through the development of this placement both MS-UK and the University of Essex are looking to create a strong link to allow future physiotherapy students to complete placements with us at Josephs Court to further allow the current users to get the best possible services that we can provide.
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.
Hi, I'm Jodie Jeffery and I'm taking part in a race or event every month throughout 2019 to raise money for MS-UK! So far in 2019 I have taken part in Ninesprings by Night (a 5k multi-terrain night race), Hyde Park 10k and the Bath Half Marathon!
My Dad was diagnosed with multiple sclerosis (MS) about 15 years ago and he has gradually become less and less able to take part in activities with my sister and I. My Dad made me fall in love with the mountains, hiking and skiing, and it breaks my heart telling him about my trips and showing him photos because I know he misses it so much.
My Uncle actually took part in nine triathlons in the summer of 2018 to raise money for MS-UK, so I decided to push myself and raise money for this charity too, having heard how much good they do.
So my next quarter's challenges are an aquathlon, a triathlon and the Great North Swim! I'm not the fittest human and I'm pretty lazy, so motivating myself to do even half the training I should has been tough, but so far I'm pulling through alright. I'm also the world's clumsiest person. I've got a titanium ankle and I broke my foot a week before the Bath Half Marathon three years ago, so touch wood I can stay in one piece for this year's events!
I am so excited to take part in new challenges like the triathlon. I also plan to do some bake sales and a quiz to raise even further funds. I've set myself a target of £500 and I'm 33% there, so if you would like to contribute to my efforts it would be greatly appreciated, just visit my JustGiving page here.