Just like fingerprints, no two volunteers are the same. We at MS-UK should know! Over the years we've met countless, kind-hearted individuals, each one incredible in their own special way, who didn't think twice about helping us out in the office or at events. After some careful analysis, we've come up with a list of the most common types of volunteer. Where do you fit?
The Happy Clapper
You’re most at home cheering people on from the sidelines. You can clap so fast that your hands break the sound barrier, the rumble of your applause rolling in late like thunder after a flash of lightning. No one has to say ‘cheese’ to make you smile. Your enthusiasm can make runners run faster, cyclists cycle further, and skydivers dive like they’ve never dived before.
You’re a walking desk diary. Your brain is a well-oiled organisational machine that clanks and whirs through a million memories at once. You know what time people have to arrive at events, what time they have to leave, how everyone takes their cups of tea and how many paperclips are left at the event sign-in desk. With you at the helm, no one is missing the minibus home.
You are the ultimate multi-tasker with fingers in a thousand pies. When event day rolls around you can be found everywhere. One minute you’re greeting marathon runners, the next you’re dishing out fizzy drinks at the post-race party. Nobody knows how you manage to be in five places at once. There are hushed rumours that you are actually one of identical quadruplets, but you’re so useful nobody wants to find out if it is true and run the risk of you leaving for good.
You’re a calming force of nature. Your voice is a babbling brook and you’ve turned listening into an art form. When people raise money for MS-UK, they’ve usually got a reason and a great story to tell, and they want to share that story with you. Perhaps you possess the aura of a storyteller yourself? Or maybe you’re just always in the right place at the right time? Whatever the reason, by the time you’ve managed to put your feet up after a day of volunteering, you’ve got enough anecdotes swimming around your head to write a novel the size of a doorstop.
The Iron Chef
Your aim is simple… To feed everything that moves. Your pockets are always filled with sweets and your bag bulges with ham and cheese sandwiches freshly made the night before. You dish out water by the gallon, each bottle ice cold even in the hottest of summer afternoons. You can hear a stomach rumbling a mile away through a crowd. With you on the team, lunch will never be skipped.
Find out who you are! Volunteer with MS-UK today!
Sometimes I fail to do the right things for multiple sclerosis.
Now is the time to enter the booth and admit my wrongs.
Forgive me doctor for I have stumbled (Sorry, no pun intended).
I have been in conversation with a familiar person while being unable to recall their name.
There are times when I don't stretch as I should.
Sometimes I wear the same clothes two days in a row. (Figuring I haven't done anything to get them dirty.)
I get angry at MS. I yell, scream, cuss at it. I use language that would make an inmate blush.
Sometimes I don't eat as I should. Too much junk. Candy, cookies, chocolate. It makes me feel "blah" yet it continues to be crammed into my mouth.
I wall-walk when I should use my canes.
At times I feel disconnected to family, friends and those around me. And I don't know why.
Some days I am too tired to shower. Thinking..."(sniff-sniff) It can wait another day."
I try to do too much--wanting to carry my share. Which usually ends up in a fall or spilling/dropping something to make even more work.
Sometimes I get tired of the seemingly constant uphill struggle with MS.
There are times I just sit quietly with not much to say. Not as lively as I use to be... and once again, I don't know why. (But I have a two-letter guess!)
Having MS is about remaining positive but there are days I am not. Negative thoughts swirl around my melon. (I am about to swear at MS again!)
Sometimes I go into a store and forget why I am there.
Forgive me doctor as I try not to allow multiple sclerosis to consume my every moment. But it is darn difficult at times to rise above.
What do YOU have to confess?
Take a seat next to me in the booth and spill your guts.
It will make us both feel better!
By Doug Ankerman
Doug pokes fun at MS and other topics at myoddsock.com.
Keep in touch on Twitter at @myoddsock and Facebook.com/myoddsock
'My name is James Harrison. I was first diagnosed with multiple sclerosis (MS) in 2014 following on from around two years of unexplained relapses in both physical and neurological difficulties. I put the relapses down to stress as I was working my first professional job and was put under an immense amount of pressure. This work stress lead me to change my job to something much less stressful, although still unaware I had an underlying condition.
'After having a relapse where I experienced the pins and needles, I got in touch with my GP to see what was happening. I had pushed the idea of MS to back of my mind and was sure it must be something else, something much less serious. This then triggered the need for an MRI scan to determine what sort of neurological activity was happening. Not long after the MRI scan I was called for a consultation and given the diagnosis of having relapsing remitting MS.
'After the diagnosis started to sink in I was hit with an immense amount frustration, confusion, uncertainty and depression. Thankfully though, I was engaged to a very loving and caring woman, who did everything possible to keep my spirits up in the weeks that followed my diagnosis. My fiancée came with me to my first appointment with my MS nurse who discussed medication options. I decided to take Rebif Interferon as this was an injection three times a week and seemed the best option. Getting used to being on the medication was a lot to adjust to. Not being afraid of taking injections three times a week was definitely a shock to the system. The aftereffects left me groggy and also left me with an increased appetite causing me to gain weight.
After only 6 months of being on the medication, I was moved on to Copaxone due to increased liver functions. This was an injection every day and took some getting used to and the injection sights were becoming more noticeable. About a year of being on the medication I found myself feeling I had control over my condition and moved myself back into a job role that would challenge me and offer future prospects.
From there it was life as normal leading up to my 30th birthday were I was able to cross off the head line of my bucket list, a skydive, which my wife surprised me with on the morning of my birthday!
It was the most exhilarating experience of my life and I came down a changed man as I felt 'if I can do that, I can do anything'! It was even more amazing to learn afterwards, my wife and family had secretly been raising money for MS UK. In the end we managed to raise £505.00. I have always wanted to raise money for MS but never got round to doing it, so having my birthday surprise double up as a sponsorship was a great idea. I learnt afterwards that my wife had not only been raising money but also awareness of MS, especially amongst her work colleagues.
Next for me and my wife is the news that we will be parents in December. This is something I have been waiting for my whole life and couldn’t be happier.
This will be another huge change for us both and will undoubtedly lead to some very tired times as well as many happy times. However, the place I am at with my MS, I know I will be able to manage any future changes and remain positive, and similarly with my condition whatever the outcome maybe.
A Colchester man who recently revealed his diagnosis of multiple sclerosis (MS) has made history by raising the £2,000 needed to run the 2019 Virgin Money London Marathon for MS-UK in just four days, smashing the charity’s record.
Since opening up on his blog about his MS and his struggles with mental health, Tom Cutts, 26, has attracted 107 supporters to his JustGiving page and raised a stunning £2,330*, cementing his place in next year’s prestigious race in less than 96 hours.
The former Wivenhoe Town footballer was diagnosed with MS in October 2017 after feeling pain in his chest, head and stomach. Since then he has admitted to falling into depression as he struggled to come to terms with a future living with the incurable neurological condition.
Mr Cutts said: “At first I thought it [the pains] could be to do with the usual stress of work but even with medication these pains never subsided.
“Getting that diagnosis sent thoughts spiraling throughout my mind. The first once was ‘what is multiple sclerosis?’ I’d only ever heard the word one or twice in my life but never knew what it meant.
“My diagnosis has caused me to fall into depression, my anxiety levels have skyrocketed and at times so have my stress levels. Coming out of depression takes time, there’s no one-click solution.”
When asked about how he felt about raising the money in record time, he continued: “The response I have received on my sponsorship page has left me speechless.
“To hit my target in less than 96 hours and to raise over £2000 that quickly doesn’t feel real. Recording MS-UK’s quickest time to hit this mark has made me feel privileged to have so many great people in my life who have allowed me to achieve this. It has been one of the most amazing experiences I’ve ever had.
“Since announcing my diagnosis to the public on Friday evening I’ve received so many messages of support from friends and people around the world that it has been hard to manage all these conversations at once.
“As well as raising money for MS-UK, my aim is to raise awareness of both MS and mental health, which are both very personal to me.
“Sharing my experiences of MS and opening up about my depression was important to me as even though I am going through a hard time in my life and struggling inside, if I am able to help just one person then my blog is a success.
“I hope to help people realise that they are not alone with these battles in life. People keep telling me that I am inspirational but to me I’m just being myself!”
*Figures as of 13 June 2018
Sleep is so important to both physical and mental wellbeing. It helps our bodies recharge and our minds settle. For eight hours at the end of each day we leave the hustle and bustle of the outside world behind heavy eyelids and transport ourselves to the blissful land of nod. But climbing into bed and falling asleep isn't always easy, particularly if the mattress is too lumpy, or springy, or harder than concrete.
So when we were recently asked about what to look for in a mattress from the perspective of someone living with multiple sclerosis (MS), we decided to explore...
'I’m looking for some advice for my mum who's recently diagnosed and struggling. I’m trying to find the best type of mattress. Any recommendations or pointers for what I need to be looking for?'
Sleep comfort will directly affect how we sleep. There are many products to consider to help keep your mum comfortable and help with any symptomatic issues she may be having during the night.
If heat is a trigger or an issue for symptoms then there are mattresses on the market that specifically have cooling and protective surfaces. You can also buy breathable ‘toppers/pads’ to put over an existing mattress that can aid with cooling which may help.
You may also want to think about the surface of the mattress itself. Softer mattresses, especially ones made of memory foam, may not be the best choice for someone who has restricted ability to move around in bed. These types of mattresses tend to shape to the body and dip under pressure, which could potentially be an issue when trying to get out of bed for some people.
Latex foam mattresses may be worth exploring. They tend to be naturally hypoallergenic and antibacterial by their very nature. Latex foam mattresses will ‘move with your movements’ and are less likely to cause the issues that memory foam may cause.
For some people with MS their priority will be looking at options to protect the mattress due to continence issues. In these instances a good quality waterproof mattress protector is suggested.
For those that spend a lot or all of their time in bed and may be at risk of pressure sores and could need an air circulating mattress or postural support it is suggested that an assessment of need is gained via the NHS to see what is best suited to each individual.
Living Made Easy is a good, independent and impartial resource for disability specific products. They have pressure relief mattresses, elevators, bed wedges waterproof covers and much more.
Depending on whether or not your mum has any physical impairments, or the need for specialist mattresses will very much effect the choices you will be making.
Whoever dreamed up the triathlon must have really wanted to teach the body who’s boss. ‘Swimming, cycling and running for miles on end aren’t tiring enough on their own,’ this mystery exercise-o-phile must have mused. ‘Why don’t we roll the three events into one and find out how much a human can ache.’
So, for those of us who get out of breath watching darts on TV, what’s it like to take on a triathlon? Paul Hurrell takes us through his journey as he prepares to run, cycle and swim to raise money for MS-UK.
‘Five years ago, I lost my mum to multiple sclerosis (MS) at the tender age of just 65. She had been in a nursing home for 20 years. During this time my younger brother and I could have really used the help and support that MS-UK provide but weren’t really aware of them. This is probably because the year my mum had to go into a home was the year MS-UK started. It therefore seemed rather apt that if I was going to do something for charity this year it should be for MS-UK.
‘I decided that I would participate in another Triathlon. I had competed in three, two years earlier, and so decided that as the Birmingham Triathlon was the first one I ever completed I would enter again this year and have a goal of beating my previous time. I decided as I hadn’t done anything for charity for a few years I would try and raise £500 for MS-UK.
‘Now, don’t do what I did! I had a few too many drinks that night and decided that one triathlon really wasn’t demanding enough to ask my friends and family to part with their hard earned cash for. So I signed up to participate in 10 in 5 months…idiot! Anyway, this Sunday I will start my fourth and I haven’t collapsed yet, so, so far so good!
‘I have the added advantage of owning a gym. It should help with my training but, like anyone, I tend not to use what is right on my doorstep. However, what it did enable me to do was try other ways of raising money rather than just asking for donations.
‘So far, we have run two exercise competitions at a local street fair and asked for a £1 donation to MS-UK to participate. We also had a totally free day at the gym - don’t pay for your training instead make a donation. This has gone so well that we are running another local event in two weeks’ time and hope to continue trying new things for the rest of this year.
‘I have had a great time telling everyone about the superb work MS-UK do, but better than this, I have already exceeded my £500 target and am well on my way to doubling it!’
Today marks the end of Volunteers' Week 2018, and what a week it has been!
To celebrate the week we created a series of short films starring some of our fantastic supporters, like Emma...
You can watch all of the films today on our YouTube channel.
If you have been inspired by Volunteers' Week, do explore our current opportunities to get involved...whether you prefer being behind the scenes or up front cheering at a national event, we have something for you!
It’s that time again when I reveal a sneak peek at what’s inside the new issue of New Pathways magazine!
In issue 109 you will find lots of great content, from the latest news and your real life stories, to expert comment. On page 11, cognition expert Dawn Langdon talks healthcare priorities and on page 18, Professor Gavin Giovannoni and his team explain why we should all #ThinkHand when it comes to research.
In addition, Feature Writer Ian Cook celebrates his silver MS jubilee on page 38, MSer Charlie Gee updates us on the fight to make medical marijuana legal on page 27 and Dr Elphinstone discusses how chiropractic can help treat MS symptoms on page 12. There’s even a cheeky throwback to our cryptic crossword on page 45.
Also this issue, we need your help! On page 23, MS-UK CEO Amy Woolf explains how she is setting out a plan for the charity’s future, but we need your input to help shape and inform the direction we take. Why not pour yourself a cup of tea and have a read, give it some thought and then write to us? We are here for you, so we want to know what you want and need from us.
Thanks in advance and as always, enjoy reading,
New Pathways Editor
In the spirit of Volunteers' Week 2018, we're thanking every single one of our amazing volunteers! Without them we simply wouldn't be able to offer the level of support that we give to those living with multiple sclerosis. We sat down with Lauren Duckling to tell us about her volunteering experience...
What events have you volunteered at for MS-UK?
I've volunteered for the London Marathon, the Royal Parks Half Marathon, and the Colchester Half Marathon.
What is the best thing about volunteering?
I think the best thing about volunteering is meeting people who have raised money for MS-UK. Being at the finish and seeing their faces as they achieve what they set out to achieve will always be one of the best moments for me!
Why do you think other people should volunteer?
I think people should volunteer because it's a great day out, no matter what you are doing. I enjoy every minute of it.
What is the best event you’ve ever volunteered at and why?
I think the best event has to be London Marathon hands down! I absolutely love London, and being there on the day, watching from the sidelines soaking in the amazing atmosphere, beats watching it on TV. I have volunteered for London Marathon twice now and I have had the pleasure of meeting so many wonderful people. It can get emotional at times but in a good way. I think it is just because it is a huge event and running that is such an achievement. I see some of the runners spot their family in the crowd and that always makes me smile.
Have you got any funny volunteering stories?
I once saw someone dressed as a toilet and that made me laugh!
Why not volunteer at an event for MS-UK? Whether you want to work in the office, behind the scenes, or help out at a national event like the Royal Parks Half Marathon, then email Jenny to find out more.
World MS Day proved to be a day to remember, with the grand unveiling of our New Pathways video and our special social media Q&A. We also got the chance to speak to a few of the MS community to find out how complementary therapies and research has had an impact on their lives.
I have officially had MS for 8 years, but I experienced symptoms 8 years before that.
Just over 3 years ago, I responded to a request for people to get involved with a new group in our village. The request was put in by a professional aromatherapist who volunteered at Cancer Care. She believed that all people with any chronic condition needed support and access to therapies. She also felt that it was important that therapies should be available locally because there was a lack of facilities in the village.
To cut a long story short, 3 years on I am secretary and 'meeter and greeter' for a growing group that has become really important to those who attend. People drop in for coffee and a chat, and to support each other - there’s no need to put on a brave face! In the group there are professional therapists offering therapies such as reiki, reflexology, Indian head massage and shoulder and back massage - all available for a donation if people wish or can afford to give. There is also trained counsellor available for when life is difficult and a listening therapy is needed. The counsellor is also trained in mindfulness and has run courses. I have attended one myself and found them very helpful.
I can certainly vouch for the benefit of these therapies for me - especially Indian head massage and reiki! I’m not alone - there are others with MS who agree. A friend of mine who was recently bereaved attended a meeting with me and her verdict was "a group like this should be available everywhere!"
Volunteering at the group, as well as benefitting from the therapies, makes the name of the group - Best Life - very apt! It certainly makes it possible for me to live the best life possible with MS.
With the glamour surrounding 'miraculous' stem cells which, to echo the words of TV talent show hosts can be whatever they want to be, you'd assume that the science has been around for decades. In reality, scientists only first learned how to grow human stem cells in 1998 after years of trialling the process with mice. It wasn't until 2006 that these scientists managed to find the right conditions to 'reprogram' adult cells into a stem cell-like state.
Stem cell research has been of a particular interest among the multiple sclerosis community due to the ability of a stem cell to regenerate and repair damaged cells. Haematopoietic stem cell transplantation (HSCT) in particular has often graced the news pages as a potential 'miracle' treatment for those with MS. But what is HSCT and how does it work?
Even though we're not medical experts at MS-UK, we are honest and unbiased. So when Professor Gavin Giovannoni from Barts and the London School of Medicine and Dentistry published a wonderfully candid blog about what HSCT treatment entails, we thought it was important to share.
In Professor Giovannoni's fascinating ‘What is HSCT?’ post on the BartsMS Blog, he not only explains the different variations of the treatment and why some are more effective than others, he also describes the process in detail from beginning to end. It's a crucial read for anyone thinking about pursuing HSCT to treat MS.
HSCT treatment comes with risks and isn't cheap. It doesn’t work for everyone and there are no clear-cut answers regarding how long any benefits will last. Ex BBC war correspondent Caroline Wyatt flew to Mexico in January 2017 to have HSCT treatment and, a year later, wrote about her experience. Visit ‘How I'm feeling after my MS ‘body reboot’ to find out whether she has noticed any benefits.
If you are looking for more information or support surrounding HSCT, there are plenty of Facebook communities that may be able to help...
World MS Day is one of our favourite dates in calendar. It's a time when people around the globe - whether they're doctors, MS nurses, students, or those living with MS - can come together and talk about multiple sclerosis (MS).
For 2018, under the banner #BringingUsCloser, the World MS Day campaign on 30 May is putting MS research underneath the spotlight.
Here's what we'll be doing on the run up to and on the day so you can get involved in the action...
For one day only, Sarah-Jane, the editor of our New Pathways magazine, will be taking over Twitter for a very special Q and A! If you have any burning questions you need to get off your chest - whether it's about recent medical developments in the world of MS, MS studies or research, or complementary therapies - then join us on Twitter on 30 May and make sure to tag us @MSUK6.
Gather around the (digital) campfire! We want to hear stories of your experiences with complementary therapies and MS research. Has cannabis helped ease your symptoms? Do you follow a diet that you'd love to recommend? Perhaps you were involved in a research trial and want to share what you've learned with the world? Let us know! Email Callum with your tales and we'll feature you in our special World MS Day blog!
We've planned a series of special blogs to coincide with World MS Day 2018! Throughout the week and on the day itself, we'll be posting about the latest developments in MS research and showing you how to get involved. Keep your eyes peeled on the MS-UK blog pages so you don't miss out!
Armed with a camera and supported by a rising actress/willing member of the MS-UK team, we've channeled our inner Spielberg to create a one-off World MS Day video! Production is currently under tight-wraps (so no spoilers) but we can't wait to show you the finished product!
As part of World MS Day 2018 on 30 May, Healthcare Fieldwork are recruiting people living with MS who use either a RebiSmart or Betaconnect to take part in market research. The Cambridgeshire based company are in the early stages of developing a new medical device for people to administer medication to help manage their MS. Their aim is to make all new devices safer and easier to use.
Participants will take part in an hour long interview - either at their viewing facility in Sawston, Cambridge, at home, or in suitable local venue - and will receive £80 for their time. No medication will be involved.
If you are interested in taking part please email Nicola at Healthcare Fieldwork or call 01223 855066.
If you want to take part in this year’s Prudential RideLondon-Surrey on behalf of MS-UK, you will need to sign up by next Tuesday 22 May.
The event on 29 July, which takes riders one hundred miles through the closed streets of London and into the suburbs of Surrey, promises to be an unforgettable experience for anyone lucky enough to be sat behind the handlebars!
If you would like to book your place, contact Jenny Poulter via email or calling 01206226500.