This year, MS-UK will be coming to the end of our current Strategy, and right now we're exploring what we should focus on in the next three years. But we need your help to get it right, and make sure that the wider MS community is included every step of the way!
Please take our short survey today and let us know what barriers you face to feeling happier and healthier in your life with MS. Perhaps you feel there is a vital MS service missing? Maybe you believe MS-UK could raise awareness of multiple sclerosis among the general public? We'd like to know your opinions, and use your voice to shape our work in the next three years.
Your voice matters. Thank you for sharing it with MS-UK!
Since 2013, Chris has managed to complete 100 marathons in aid of MS-UK, racking up over 2,500 miles! What is the secret to Chris' success? We spoke to him to find out...
I ran the Virgin Money London marathon in 2013 and 2014, the London to Brighton 100km (63 miles) challenge, the 15 marathons challenge in 2015, and the 30 marathons challenge in 2017. My 100th marathon, at Betteshanger Country Park, was also in celebration of MS-UK!
When my wife Jennie was diagnosed with MS in 2011 we turned to MS-UK for help. They were brilliant. They gave Jennie access to the help and support she needed at the time and ever since. I decided to do something to support the brilliant work they do for people living with MS. Now, seeing the centre grow and the facilities develop, it feels great to have played a part.
I have run several navigational races and normally get lost which adds to the fun! During the London to Brighton challenge in 2014, a fellow runner was following my head torch to help get over a stile but missed the jump and fell over in style!
I found it easy to raise money the first time around as the 100 marathon challenge is a massive commitment that everyone is eager to see you complete. In the years that followed I have found events such as quiz and music nights really worked well. I hosted a fundraising penalty shootout which worked well too.
For my next fundraising challenge I will be taking on a 100 mile run in Dover in 2019. As 63 miles is the furthest distance I have ever run, I feel like this will be my biggest challenge yet! If you would like to donate you can visit my JustGiving page!
Like many others, I lost a special someone to this cruel disease on 13 February 2002 - my Mum!
As a promise to myself, I have vowed that for each landmark birthday I have - my mothers name, Deborah Bendell, will be honoured - as without her, I wouldn’t be celebrating at all. So, for my 25th birthday I am hosting a Dinner & Dance in aid of this amazing charity, MS-UK.
Multiple sclerosis is a cruel disease and those who suffer with it can often deteriorate extremely quickly and unfortunately this was the case for my Mum. Despite the pain and suffering my Mum went through, she’ll always be remembered for being the happiest and cheekiest person in any room. I aspire every day to make her proud and resemble her in some way - so for me, this fundraiser is just the start of a long journey.
I may not have had much time with my Mum, as I was only 8 when she passed; however I know the support we received after her passing was second to none and this charity, MS-UK, is able to offer similar to others in need too.
So the long and short of it, if you aren’t able to celebrate with us on 27 April at the Dinner & Dance (see below the flyer for contact details) but would like to contribute to this special charity, any spare change to reach my goal is unbelievably appreciated!
In memory of Deborah Bendell, my Mum, and other loved ones suffering!
This time next week MS-UK will be celebrating MS Awareness Week, and you can join us!
This year we are spreading the word about our newest national service, MS-UK Counselling. I would love you to get involved by downloading our Twitter and Facebook graphics...by adding them to your profiles you will be helping us reach even more people affected by multiple sclerosis who may benefit from counselling.
Right click on these images and select 'Save image as...' to download them to your computer:
Thank you for your help!
When I was eight years old I remember joining thousands of other people lining the streets of London, waving and cheering as streams of people ran past. At the time I didn't really understand the enormity of what those people were doing, running mile after mile, some fast, some slow, some walking but all in the aim of completing 26.2 miles. Amongst those people was my Dad.
Fast forward a few years and my Dad had to take every ounce of energy he had and a hell of a lot of drugs to pull himself out of his wheelchair and slowly holding tight on to me, walk a few steps down the aisle of a church on my wedding day. He had been diagnosed with multiple sclerosis (MS) the year before and had his world turned upside down. From being fit and healthy, in the Police to being forced to take early retirement and a complete change of life.
For years after I watched my Dad, I would watch the marathon on TV every year saying to myself 'one day', and since taking up running the itch has needed scratching so I decided the year I turned 40 to make my bucket list dream happen to take part in the most amazing marathon in the world.
As soon as I heard I'd been accepted to run for MS-UK I set the wheels in motion for my fundraising, looking at where I could start generating easy money with little effort whilst I planned a big fundraiser. Sponsorship started coming in as soon as I announced my challenge and as a Slimming World Consultant I have had amazing support from my members for my fundraising. I have a change pot in group and my members along with other groups in Chelmsford, Essex agreed for the next few months to have these for MS-UK. Everyone's odd 5ps, 10ps are really adding up to over £50 a month donated this way. Again members supported through donating their slimmed out of clothes which were swapped for cash and a Christmas raffle in my groups raised £284.
Michelle who runs Chelmer RoadRunners, a local running group which is where I first learned to run completing a couch to 5km course, sings in a local band and I approached her to sing at a charity night I was planning. Seen as she got me into the mess in the first place it seemed fitting to have her at the event! A local pub was the venue (free hire to maximise funds raised!) and with the fabulous entertainment, a raffle to be held. After hundreds of letters, emails and approaching local companies I managed to secure some great donated prizes and started selling raffle tickets to people who couldn't make the night, again to ensure I raised as much as possible. Promotion of the event went out on social media, posters up locally and great support from local papers - three have now printed my story to help further support!
The charity night went well, everyone had a fantastic time and most importantly a brilliant £1,186.06 was raised to bring my total fundraising over my initial aim of £2,500 - but I'm not stopping there - a sweepstake planned, further change pots and sponsorship will hopefully bring the total to £3,000, or more! Every penny will help MS-UK give amazing support to people like my Dad.
So now, the countdown is on till the big day itself where I shall be so proud to be running the same streets that my Dad did in 1986 (but not accepting his challenge of beating his time of 3 hours 35 minutes!)
April is always an exciting month for us here at MS-UK as we mark MS Awareness Week, and 2018 is no different!
This year we are celebrating our newest national service, MS-UK Counselling. We launched the pilot of this service in October 2017 and since then have delivered over 150 telephone counselling sessions to people with a diagnosis of multiple sclerosis. But we want to help even more people!
At MS-UK, we believe that it’s good to talk. However, we know that there can still be a stigma around accessing counselling, and we want to break down these barriers so people diagnosed with multiple sclerosis can get the support they need.
So, this MS Awareness Week I ask you to help us spread the message that it’s good to talk! Throughout the week of 23 – 27 April we will be posting on Facebook and Twitter all about MS-UK Counselling, and it would be great if you could help us spread the word by retweeting or sharing our posts. Thank you!
Keep an eye on our blog for updates as we near the big week...
I am pleased to say New Pathways issue 108 is now landing on doormats across the country! As always we have a packed issue, full of all the latest multiple sclerosis (MS) news and research, including drug updates and the latest cannabis study findings.
As the sunshine begins to make an appearance, we get topical with lots on vitamin D. MSer Ian Cook puts vitamin D tablets and sprays to the test (see page 30) and Kahn Johnson reveals what happened when his vitamin D levels became toxic on page 16.
Also in this issue, MS Nurse Miranda Olding discusses sexual dsyfunction and what can be done to help (page 14) and we have the big interview with the star of Channel 4 programme 'The Search for a Miracle Cure' Mark Lewis (page 24).
I hope you enjoy reading this issue, and please do email me your comments and letters to firstname.lastname@example.org.
Editor, New Pathways
P.S. Don't forget New Pathways is available to read on the go. Download the My MS-UK app from the App store on your phone or tablet device today!
MS-UK’s Wellness Centre, Josephs Court works closely with the University of Essex to support occupational therapy students (OTS) by providing role-emerging placements while they train.
Each year the Josephs Court team is invited to speak at a symposium with the new OT recruits about role-emerging placements at its Wellness Centre in Colchester, Essex and increase their knowledge of multiple sclerosis (MS).
Diana Crowe, Head of Services, said: ‘We took the opportunity to promote all of our services, but focused on what we deliver at Josephs Court, such as the exercise equipment and the benefits this brings to clients.’
‘There was good interaction and we were asked about the social activities we provide, so we discussed the MS-UK Social Group in Colchester, which has regular coffee mornings and other events such as bingo!’
‘Due to recent headline news regarding HSTC there was an interest in how this treatment could impact on us as a charity and our clients. Just like everyone else we will have to wait and see how the treatment develops, but we will continue to support people with MS for as long as they need us.’
‘We split into groups, which gave us a chance to speak in more detail with some of the students,’ explains Dean Jeffreys, Centre Manager. ‘The students were interested to know about APS Therapy, how we link up with other services and how politics impacts on our strategy.’
Speakers from St Helena’s Hospice spoke about its gardening project for those at the end of life and Craig, from Pots the Soldier, spoke about his post-traumatic stress diagnosis after leaving the army and how he found a love of pottery thanks to the support of OTs – very inspirational!
‘It was great to see the students so interested in the work MS-UK does and we hope to continue to work with Essex University over the coming years. Who knows one day we may have our own MS-UK Occupational Therapist,’ adds Diana.
We just wanted to let you know about this important source of information that our MS-UK Helpline team regularly uses to support the multiple sclerosis (MS) community.
The Disability Rights Handbook is a guide to benefits and services for anyone with a disability, their families, carers and advisers. It contains a wealth of information relating to the benefits system, as well as social care services and help for carers. This guide will be relevant to many people living with MS.
Clients who use the MS-UK Helpline have let us know how valuable the information provided by our advisors is and, since a lot of that information can be found in the Disability Rights Handbook, we wanted to share it with you. If you would like to buy your own copy, you can do so on the Disability Rights UK website store.
We wanted to let you know this was available to pre-order as last year’s handbook sold out in quite quickly!
As always, though, our MS advisors are available to listen to you, talk things through with you and keep giving you as much helpful information and support as possible.
The Beast from the East has arrived! I’m recovering from a relapse (MS for sh&t!) where my mobility has been challenged, I’ve fallen several times (last time at the cinema whilst moving to let someone pass, think I deserve an Oscar for my performance!) and experiencing tons of fatigue (if I got paid to sleep, I’d be rich) so my writing is on the back burner.
I was inspired to write about how the weather affects those like me. It’s been on my mind. I have thought how reduced energy levels and mobility doesn’t wash with this weather, how limited I am but more importantly how I have to think differently and be more prepared.
The weather presents many challenges. If you flick on the TV, there are shots of the level of snow, schools closed, difficulty travelling, travel disruption and forecasts for how long we are to expect this harsh winter weather. And it doesn’t help with a storm on the way. Many other countries experience snow. They are prepared. Ours grinds to a halt, although in its defence, this harsh weather is the worst I’ve seen for a while. Little man loves the white stuff. So here are my tips for handling bad weather for those in my boat, or anyone really.
You’ll probably stay in at home. For little man, I stock up on craft kits, board games, films for indoor fun ( I can recommend Peppa’s Cold Winter Day and Peanuts movie for little man and it doesn’t drive me nuts) and books. Reading to little man is a great time filler. Ask others to buy children’s magazines if you’ve not got any in. They usually have stories, colouring and sticker fun.
When travelling, I make sure I have food, drink, toilet stuff (she wee/incontinence pads, travel potty, toilet roll, baby wipes, carrier bag to put things in, gross but true!) things to entertain little man, warm clothes and a blanket. We’ve been putting a little man’s blanket on the radiator to place on him during car journeys.
My mobility is bad and I’ve fallen a few times. The safest option is staying at home but it isn’t always viable. Slippy snow and ice isn’t great for anyone but when you have fallen and use a walking stick (doesn’t work well in snow!) this weather is super scary. I wear shoes I know that can help and am buying shoe grips.
Don’t put pressure on yourself
It’s OK to feel like you can’t be bothered. But little man is so excited. He’s seen snow before but not on this scale. I close my eyes and little man wakes me by shouting “kick a ball” or “go outside Mummy”. My husband says he’ll stick me on a sledge! (I’m thinking about weight restrictions!) It’s heart breaking when you have little energy to lift your bum off the sofa, let alone play in the snow. Give yourself a break, if you can. I’m saving energy for the weekend as my husband says he’ll be my chaperone. I’ve realised that asking for help is not a sign of weakness – so family and friends have had fun in the snow with little man, giving me a chance to recharge. I think they like it!
Protect your mind
Asking for help helps you to rest but there is the realisation that you can’t play in the snow like yesteryear. Emotions come to a head. Grief. Anger. Frustration. Envy. Social media has a lot to answer for that. Don’t get me wrong it’s lovely to see what others are doing on their snowy days but it’s a reminder that you have limited mobility. I’ve cried a lot over the last few days because I want to be the one to play in the snow with little man. I will go out at the weekend with my husband around. In the interim, try not to be alone, hook up with others whether it’s friends who can come to you (I organised a play date today), speaking to social media contacts ( I asked my local MS Society group for best shoe grips recommendations) and plan for brighter days ( I’m thinking of summer holidays).
Be more hygge
In the interim, snuggle down, grab a blanket, hot chocolate and biscuits may not be great for the waist line but I’m still scoffing and watch films. Be like a Dane until the bad weather goes away.
Stay safe everyone! I’d love to know your tips?
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