In our latest guest blog, Rossia Mockett tells us how she's turned a love of sewing into a 'stich-perfect' way of supporting MS-UK!
My eldest son was diagnosed with multiple sclerosis (MS) in 2015, it came as a shock for him and for us as a family, then came the emotions and dealing with the diagnosis which wasn’t easy for any of us. As time went on we searched on the official MS charity websites (including MS-UK) which were helpful to us in gaining a better understanding of MS and some of the difficulties that come alongside living with MS. We found it helpful to be able to read the stories of others and to be able to know that our son was not alone in what he was going through.
This year I decided that I wanted to raise money for three main multiple sclerosis charities, one of them being MS-UK. I love sewing, so earlier this year I launched my business, New Barn Crafts on Etsy. I then applied to craft fairs and took my handmade items along to them, taking with me my MS-UK collecting boxes and literature. This has been successful because people could purchase an item from my stall or donate to one of the three MS charities of their choice. On some occasions they do both! I’ve really enjoyed doing the craft fairs as I’ve met some wonderful people and had some great conversations about their loved ones, family members, or friends who are living with MS. I have so far raised enough money for a Pin for Pounds badge which I am thrilled with!
Where possible I think that it’s important that others try to get involved and help raise money for such a great cause! It’s given me great pleasure that, even doing something as small as this, you can make a difference. If I can do it anyone can do their bit to raise money for an amazing charity such as MS-UK. As we come to the end of the summer, and the craft fairs are finishing up, I look forward to developing my Etsy shop and New Barn Crafts Facebook page further and get some sewing completed for next year’s forthcoming events.
Want to get your hands on a limited edition, 25th Anniversary MS-UK pin badge?
With the recent announcement that the government and a number of major high street brands are backing the UK’s first ever inclusive shopping day aimed at supporting the disabled and immobile, accessibility in our cities and towns will be vastly improved for those with multiple sclerosis (MS).
Called ‘Purple Tuesday’, the innovative scheme will take place on 13 November and will see retailers including Argos, Asda, Sainsbury's and Marks & Spencer introduce new measures to make shopping a more comfortable experience, especially for those in mobility chairs.
But whilst this is much-needed progression, many people are unaware of the experiences that approximately 10,000 MSers deal with before they can even enjoy the luxuries of shopping and eating out – things we often take for granted.
For instance, someone who has the condition may have to rely on a wheelchair or mobility chair as a means of getting around. Unfortunately, this can involve a lot of hoisting, such as from a bed to a chair, which can put a considerable amount of pressure and strain on loved ones.
Once in the chairs, accessibility can still be an issue. If the chair can’t be modified, for example, simple tasks such as going out into the garden, or even entering the lounge or living room from the bedroom to spend time with family and friends can become an unnecessary challenge.
If an immobile person is deprived of accessibility for a prolonged period of time, isolation and loneliness can become a daily issue. In the worst-case scenario, a lack of accessibility can have a detrimental effect on the person’s mental health, with illnesses such as depression arising from feeling as if they have no freedom or independence.
So, it is important to remember that mobility is about more than just making places accessible. Yes, chairs the immobile use must be inclusive to utilise accessibility, but ultimately, they need to ensure the user is kept comfortable and safe.
A bespoke mobility chair, for instance, can be adapted to cater to an individual’s specific needs. Adjusting a specialist lounge chair to suit the user’s environment or varying physical needs, will make spending quality time with family and friends a more comfortable and accessible experience.
As well as being portable, multi-adjustable, with tilt in space capabilities and light in weight, bespoke chairs can provide those with MS with a greater sense of independence and freedom, while offering the highest level of security, safety and stability.
Overall, as a nation striving for more inclusivity, we must make mobility more comfortable for those with MS. Yes, retailers recognising the need to better improve accessibility for mobility chair users is fundamental in reaching our ultimate goal of creating a fully inclusive society, but we must also endeavour to make the user’s quality of life as comfortable as possible both in and outside of the home.
Let’s continue to talk about accessible shopping to raise awareness. Why not share your good and bad shopping experiences, or what mobility aids make shopping possible for you. Visit out Facebook page to add your comments.
My name is Charlie Stebbings and, along with a 14 strong team, I cycled from London to Paris between 04 - 06 May.
Myself, Mortimer McKechnie, Paris Baker, Millie Bampfylde, Tom Sater, Alicia Hanmer, Rob Gibson, Occy Cobb, Paddy Rogers, Lucy Munday, Robin Butler and Tom Everard decided to commit to this challenge in aid of three fantastic causes - MS-UK, Cancer Research, and SUDEP Action. Along with our amazing and indispensable support drivers Jack Smail and Helen Callaghan, not to forget our two broken bone casualties Katie Barton and Minty Naylor, we made a formidable fundraising team intent on giving as much support as we could to these fantastic causes.
MS-UK has been a fantastic support to our family over the last eight years since my mother was diagnosed. The work they do for suffers and their families is integral to all those affected by multiple sclerosis (MS) and therefore it is always a privilege to fundraise for them. Having said that, the pain you experience near the top of the mountain on day two at mile 95 was accompanied by a ‘what are we doing’ moment, but that is part of the fun! We organized this challenge to test ourselves and push us so that everyone felt that sense of achievement and success.
The 300 mile trip over three days was a brilliant way to do just that, and apart from Tom Sater Cycling into the back of Lucy Munday as he was being sprayed by a very friendly Frenchman watering his plants, and my exploding tire in Paris, we made it without a hitch. The 30 degree weather was both a blessing and a hinderance, but there is no doubt it kept moral high and helped those of us often void of a tan suitably rosy.
The fundraising experience is one that we can all approach in different ways, but we liked to get people engaged with the trip and run fundraisers instead of solely distributing letters or emails etc. I think there is nothing more enjoyable and motivating than hosting an event which shows you how much support you have for the charities and how many people genuinely care for your cause. I recommend it to anyone who haven’t involved people tangibly in their fundraising to try it. It adds that extra dimension and can remind you why you are doing this often crazy challenge!
Gift aid included, we raised £20,600 and am delighted to be able to give MS-UK some of that money. I must thank my team for supporting this charity with such enthusiasm. It means a huge amount to me, my family, and hopefully everyone in this community.
On to the next one!
Meet the winners of this year's Friends of MS-UK Awards!
Every day this week, we'll be revealing each of the well-deserved winners and finding out, in their own words, what it means to be awarded such an accolade...
Since 2011, ‘Miss Sparkle’ has been inspiring those around her to support MS-UK. Susan has raised over £21,000 for the charity and has run eight marathons, not to mention taking part in many other events! Above all, Suzy has made an amazing achievement this year, as she has enabled MS-UK to reach out to 28 new supporters, all of who are runners Suzy has recruited into the Virgin Sport British 10k event.
Susan has always been surrounded by multiple sclerosis (MS), through friends and family, and chose to fundraise for MS-UK because we offer practical, unbiased information and support to anyone affected by MS.
She said: 'This award comes as a little bit of a surprise, but I feel very humbled to even have been considered. I’m just doing what I do best and that’s running, then boring everyone so much that they sponsor me just to shut up! I’m looking forward to receiving the trophy, which I will display very proudly next to my ‘MS-UK sponsor me’ table where I work, I’m sure people will feel even more generous for future events.'
Meet the winners of this year's Friends of MS-UK Awards!
Every day this week, we'll be revealing each of the well-deserved winners and finding out, in their own words, what it means to be awarded such an accolade...
When Chris’ wife Jennie was diagnosed with multiple sclerosis (MS) in 2011, they turned to MS-UK for help. Since then, Chris has run in aid of MS-UK...and run, and run, and…
In 2013 Chris ran the Virgin Money London Marathon and since then he has applied dedication (and endless hours) to reaching an amazing milestone – completing 100 hundred marathons in aid of MS-UK. That’s over 2,500 miles!
This year, Chris officially joined the 100 Marathon Club when he completed his 100th run at Betteshanger Country Park.
He said: 'I am delighted to receive this award, it was a nice surprise. It has been a pleasure to help raise money for MS-UK and watch them grow and develop over the years. I have fundraised for them and see how the money myself and others raise goes to good use.'
Being diagnosed with multiple sclerosis (MS) can be a life-changing event. It can be a lot to take in and making sense of what it will mean can be daunting. You may be concerned about what this means for the future and whether you’ll have to move into a residential care home to get the support you need.
Even with growing support needs, it is possible to stay in the comfort of your own home. Private home care providers offer flexible support options on a visiting basis and even in the form of a live-in personal assistant, enabling you to have the best quality of life.
Let’s take a look at the alternatives to residential care.
MS can cause difficulties with mobility and communication. This can be incredibly frustrating for anyone living with the condition and these difficulties can pose unique issues, particularly with friendships.
Though a residential care home does offer round-the-clock support, for someone living with MS letting go of their home comforts and independence can be incredibly unsettling.
With home care, you can stay in the environment you know the most, with the same routines and friends and family nearby who can visit whenever they want.
Caroline Redman is Head of Customer Service at Helping Hands, and helps to arrange support at home for people living with MS. She says, 'We place a special focus on creating support plans that are flexible and completely built around each person’s unique needs. Whether they need visiting support at mealtimes, help first thing in the morning or late at night, all the way through to a handpicked personal assistant who’s there 24/7 and supporting with getting out and about and other day-to-day activities.'
This article is taken from issue 109 of New Pathways magazine. To read the full article, subscribe today!
Climbing three mountains is harder than climbing one. That's just basic maths. In our latest blog, Diana, Head of Services here at MS-UK, tells us how she beat the Yorkshire Three Peaks Challenge...
On Wednesday 23 May I received a text from my husband saying he was organising the ‘3 peaks thing’ as a fundraising event for his employer’s charity of the year. He said ‘it’s hard work but doable’ and ‘it’ll need quite a bit of training’! I casually agreed to it as long as I could fundraise for MS-UK.
Now, I consider myself to be quite fit. I play netball once a week and had recently completed the NHS Couch to 5K programme, running three times a week until the heatwave descended upon us.
07 July saw our training walk in Sussex – the Seven Sisters walk in 30 degrees heat while England were playing their quarter final against Sweden in the World Cup. It had been graded 9 out of 10 in terms of difficulty. After the 12 miles we completed I had nothing left in me. But my husband threw a Mohammed Ali quote at me ‘Train hard – fight easy!’.
5am on 21 July we are up and heading to the start line of the Yorkshire Three Peak Challenge. Our kit was checked and a briefing given and we were off. 24 miles in 12 hours was the challenge, reaching the summits of Ingleborough, Pen-y-ghent and Whernside. Being extremely competitive I started off keen but after finishing the first peak I wondered how I would ever complete the challenge.
Our group leader, a professional mountaineer encouraged us by calling us his ‘Warriors’! No time to rest, no time to take in the views, we just had to power on. Regular painkillers for the dodgy hips and we soldiered on.
I have to say this was the hardest thing I’ve ever had to do, but whilst I had my head down, and I was quietly battling my fatigue, I remembered why I was doing this challenge. As Head of Services at MS-UK I am inspired every day by people affected by multiple sclerosis. They were my motivation and what got me through.
I managed to complete it in 11 hours and 03 minutes and so far I have raised over £300 for MS-UK. Here is my fundraising page if you would like to sponsor me.
In our latest guest blog, Julie Squires tells us about why she decided to run the Virgin Sport British 10k at the tender age of 50.
I met my partner David 13 years ago on 02 July 2005. He told me straight away that he had multiple sclerosis (MS) and to be honest, at that time, I knew little about the illness.
We went out on a Saturday night but David had told me he couldn’t have too late an evening as he was up early Sunday to run the Virgin Sport British 10k raising funds for an MS charity.
I knew I must have liked him a lot as I dragged myself out of bed at 6am to head up to London to watch him run!
So when I decided to take up running earlier this year at the grand old age of 50, David said it would be good if I ran the Virgin Sport British 10k, just like he had 13 years ago. This gave me something to focus on (as when I started I couldn’t run to the end of the road, never mind 10k)! But here I am, seven months later, running 10k at least once a week thanks to the ‘Beginners to Runners’ Ashford Club and David for giving me something to aim for.
David was diagnosed with Relapse Remitting MS when he was 32. I didn’t know him then but can only imagine the shock of learning something so life changing.
David has pushed himself to make the most of what he is able to do now rather than putting it off until later, which we can all be guilty of. Since I met him he has achieved so much in defiance of his MS.
He got his motor racing licence, he’s taken up cycling and keeps himself as fit as possible. He wouldn’t be able to run anymore, but he has found other things to do to make sure he’s as fit as he possibly can be.
So this one’s for you David Williams. You are a true inspiration. You are always so positive in the face of this horrible illness. Yes, there are hard times, but we get through them and our beautiful son and I could not love you more.
'I met Michael 14 years ago through his mother Dinah as she was aware that I was a personal trainer. She approached me and asked if I would be able to train him. I was made aware of Michael’s autism and became determined to give this fine young man the opportunity to get fit within different environments such as the gym and running outdoors.
'As he gained confidence with me and in different social surroundings Michael agreed to enter a local six-mile running event in Northampton for some fun and as a focus to train. He managed to complete it and seemed to enjoy the feeling of achieving something.
'From this we decided to increase the distance as he developed trust in me. We went on to complete a Daventry 10-mile event and The Hyde Park Half Marathon in 2011. We raised funds for The Autistic Society, approximately £1,500.
'I certainly had the belief that Michael was capable of anything, and towards the back of 2017 we had a brief discussion about entering him into a marathon. Making the impossible possible was to be my mission in the year of 2018 and I suggested the Milton Keynes Marathon would be realistic in May. We certainly had the weather against us at the start of the year with snow still falling in March which delayed our outdoor sessions somewhat. We literally had eight weeks of preparation leading up to the big event.
'Over the course of eight weeks Michael had to face so many barriers when training for the marathon. I had to ask him to change what he eats and when he eats, run during unusual times of the day and at weekends. Due to his autism this was not an easy task, but he trusted me and was able to overcome these difficulties. We successfully managed to train up to 20 miles and felt as ready as we could be leading up to the event.
'Two weeks before the event we decided to raise some money for charity. I suggested that we could run for MS-UK as my working colleague lives with MS and was fully aware of the effects and problems it has on an individual and families supporting this. We set a low target to begin with and as the money came in it soon become obvious that friends, families and the general public were right behind us and they loved our commitment, passion and ambition to complete such a mammoth task.
'On the day of the event, 07 May, it was to be one of the warmest bank holidays on record. We had this against us and at mile ten of the race Michael became affected by the heat and fell to the concrete. I felt devastated for Michael and thought that he was unable to carry on for a brief moment. But through positive talk, motivation and his determination Michael got back onto his feet and together we managed to complete the next 16 miles. It was undoubtedly one of the most challenging tasks I have ever done and to Michael a magic moment to savour for the rest of his life. It was a stadium finish with the crowd, family and friends behind him. He finished in six hours and six minutes. The emotion we both felt was beyond words. We did it!
'We made the impossible possible.
'Following the event it soon became clear that our target amount of money raised was totally smashed. We ended up raising over £3,000! It is so difficult to put this into perspective and we were totally blown away by everyone who supported us and offered kindness to us both.
'We have recently returned back to our regular training regime and Michael is absolutely certain he does not want to do it again next year! He keeps reminding me of this every time we head of out on a run!'
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!