Hi everyone, We would love your help! We are updating our Choices leaflets about pain, vitamin D and bladder and bowel symptoms, and we’d really like to have your insights included.
By asking you to tell us about your personal experiences of living with multiple sclerosis, we hope to make our Choices leaflets relevant for other people. Take our survey today online You can read our Choices leaflets on a range of subjects, from symptoms to treatments, on our website. Thank you for taking the time to share your expertise with us! Best wishes, Diana Diana Baxter Head of Services, MS-UK
Last week myself and Diana, our Head of Services, visited the Royal College of General Practitioners (RCGP) in London. We were exhibiting at their ‘One Day Essential: Neurology Conference’.
The RCGP offer one day conferences to GPs, providing expert specialist clinical training and essential information. The aim is to help GPs improve their practice and patient outcomes.
There were a number of expert speakers, covering various neurological conditions including Dr Gabriele De Luca, who spoke about multiple sclerosis (MS). Dr De Luca is an Associate Professor and Honorary Consultant Neurologist in the Nuffield Department of Clinical Neurosciences, University of Oxford. He is also the Director of Clinical Neurosciences Undergraduate Education at Oxford Medical School. We were fortunate enough to be able to listen to his talk.
His session was informative, educational and most of all engaging. He explained to his audience more about MS and provided further information to support the delegates in deciding what are potential neurological symptoms, and when to refer on to neurology. He also discussed ways in which to decide if their patients are having a relapse or not and making the link to the central nervous system.
We had time to chat to the delegates attending the conference and explained how we can help support their MS patients in their day to day living through our services.
It is always nice to attend events where we can chat to people face to face and talk about our work. It was a great opportunity to talk to GPs who are the front line professionals at the start of everyone’s journey and beyond.
I'm Jill the new Fundraising Manager here at MS-UK. I've been here a month now and have been getting to know the place and the services we offer. I'm so impressed with the great support MS-UK offers to people living with MS and their families. I've spoken to clients and carers at our Josephs Court Wellness Centre. There's a real buzz about this place. The positive impact people get from coming here is clear both physically but maybe more important is the social element and being part of this highly supportive community.
I've seen the comfort our Helpline Advisors offer by answering some really varied questions from 'I'm thinking of getting a dog, how will this affect my MS' to 'I've recently been diagnosed with MS, what does the future hold for me?'
I've also read a few issues of our bi-monthly magazine, New Pathways and have been inspired by stories sharing the courage and determination from people living with MS. I love what we do here and I'm part of a great team. I'm so revved up to maximise our fundraising events and activities to ensure we sustain and grow to be able to reach out to more and more people.
I started my journey in fundraising back in 2009. I moved away from the big smoke to the leafy suburbs of North Essex and wanted to integrate into my new community quickly. I joined Colchester Ladies Circle, the female arm of Round Table promising fun, friendship and fundraising. I found myself having great fun organising charity balls, race nights and even a Carnival raising money for good causes in my community. I loved fundraising so much I decided to make it my day job and joined the fundraising team of our local Hospice. I gained a wealth of experience in fundraising through lots of initiatives including an apprentice style challenge for businesses, mass events such as The Midnight Walk and Bike Rides through to lavish balls, quiz nights and talent shows.
Outside of work you'll find me on the side lines cheering for my sons' football teams (oh and I fundraise for the football team too!) or keeping our young daughter busy with swimming, baking and running around in the park. I like to work hard and play hard, but it’s all good fun and I've met some great people along the way!
It's a busy time of year for us in fundraising so I'm pleased to say that along with Nick and Jenny (who joined the same week as me) we are a full team. We're currently putting the finishing touches on the Virgin Money London Marathon, which is less than a month away. This year we have 111 fantastic, fit people running for MS-UK, we can’t wait for Super Sunday!
Preparations for the British 10k and RideLondon are also well under way. We still have some places so if you want to get fit for summer and achieve your goals join our teams for these two prestigious London Events.
We are really keen to spread the word and get as many people involved with our fundraising as possible. Weather you love getting active or prefer having a cuppa and a cake we have loads of fun, creative ideas to help make your fundraising a great success. We rely solely on our supporters to run our services so if you would like to help us raise some money and support people living with MS please get in touch with Nick, Jenny or myself. We'd love to hear from you.
Cannot wait to meet you all soon,
So, everything for your friend’s wedding day has been planned, the day is getting closer and you’ve suddenly been asked as best man and woman to organise the stag night and hen do. Nightmare! You can’t think of anything to do!
Well, we believe we have found the answer.
We were discussing in the office what the most inventive and memorable stag or hen do would be, and as we discussed it, we realised that the answer was right under our noses and sitting at my desk the whole time. The most inventive stag/hen do would definitely be to go skydiving!
Thinking about it, we had seen skydives done before on some TV shows for stag/hen do’s and we thought it was the perfect day of pre wedding fun and would be a good way make the big day far less daunting for the bride and groom. You could also skydive during the day and then by night hit the town with your friends!
So, the other reason it would be the perfect stag do of course, would be that you can book it through MS-UK and fundraise for us at the same time. This would also make the jump completely free if you manage to raise the sponsorship minimum of £395 each. Leaving you with some extra money to treat your groom or bride to that big night out!
You’ll also do several amazing things all at the same time...Support MS-UK and the services we provide, jump out of a plane at 10,000ft which is no small achievement and finally give your bride and groom an experience and a story they’ll never forget!
So if you are the best man or woman, or know someone that will be, maybe this could be the opportunity of a lifetime for them!
Get in touch with me at Nicholas@ms-uk.org or call me on 01206 226500 for more information on skydives! Alternatively, if you’d like to go straight to booking, please follow this booking link and fill out the form!
In this guest blog, Chloe Metson reflects on Mother's Day and what that means when you have young children while living with multiple sclerosis at the same time. You can check out her blog, Tantrums and Tingles, online today for more too!
Mother’s Day is upon us, and it’s the time of year when I reflect on how lucky I am.
I’m the mother to two beautiful children, but it hasn’t always been the easiest ride.
I was diagnosed with MS when I was 18 years old, which really put a spanner in the works when it came to making future plans. Back then I didn’t have access to the information I do now, so I felt very much alone. The future seemed daunting and scary.
With that in mind, I couldn’t even imagine having a family and being strong enough to cope with everything motherhood throws at you. How would I be able to cope with labour when I was so fatigued? How could I cope with night feeding? Broken sleep? And even just physically carrying a child all the time? It seemed terrifying to say the least. So for years I resided myself to the fact that I would never be a mother.
It’s only when I reached my late twenties that me and my husband decided to take the plunge and start a family. All of the doubts were still there, but the thought of never being a mother gradually overtook any fears I had. And I’m so glad we did it.
It’s very tough at times, and my MS undoubtedly gets in the way, but in those early days I was amazed at how much my body adapted. Of course I was still fatigued, but I coped better than expected, and with help and support we found a way around it. I rested whenever I could, and though we didn’t get out much and socialise, I was content that we were doing what was best for us.
For all the tough times, motherhood is one of the most rewarding experiences I will ever have. I remember the overwhelming pride I had in myself for just getting through labour, and delivering this beautiful creature into the world safely. I knew it was going to be tougher for me as a Mum, but because of this even the smallest achievements had a greater significance for me.
I never think of Mother’s Day as being a celebration of me as a Mum though, but rather a time to thank other mothers for their help. My own mother. My mother-in-law. My friends and family members who are mothers. They help to take the strain when things become too much, and we stick together as a family. I want to thank them because they make coping with two children a joy instead of a worry. I truly couldn’t do it without them, and they make me the mother I am today. A happy mother who, despite the MS, feels confident enough to deal with the challenges motherhood brings.
We’ve got a new event this year in the form of a half marathon around London’s Royal Parks! Can you guess what it’s called?
Yep, the Royal Parks Half Marathon!
I wanted to write a blog as to why I think this is going to be an amazing event, I’m really excited about it!
The event is now 10 years old, so it will be a celebration of all things running. This means they’ll pull out all of the stops and make participants feel extra special when they run, which is what we always love to hear. After all, people are running a half marathon for us – no small achievement! There’s even a food and fitness festival at the start/finish!
The Royal Parks Half Marathon may have one of the more beautiful settings for a half marathon as well…it’s in the autumn (08 October), just as the leaves are falling and it’s around the leafy parks of London, ones which are world renowned for their pristine walks (or runs)! From the lake of Hyde Park and the Pelicans of St James’s Park to the spectacular sight of Nelson’s Column, the scenery and wildlife is a major advantage of this run!
Finally, you will be in good company…around 16,000 runners take part each year! This means there’s a really good social aspect with the race. There’s a chance to meet a whole new group of people who share your passions, whether that’s running, fundraising, or shining a light on good causes in general.
So that’s why I think the Royal Parks Half Marathon is one to get excited about this year. It’s certainly made me excited!
So if this sounds like the event for you, please do get in touch with me and I can send you more information on the event!
Thanks for reading!
We have been using an online live chat system for some time now and it has shown to be popular. Certainly for those who may not feel in a position to pick up the telephone for whatever reason, and for those who would like a more instant response than email. It also means we have been able to chat to people abroad too, when they may have found it difficult to find support.
Our Digital Officer, John, has now developed a nice little function whereby a pop up appears on every page of our website to show people that the live chat facility is available. This has certainly increased the amount of web chats we have received which is great as it has meant we have reached out to more people affected by MS.
If we are engaged - either chatting to someone already, or perhaps on the telephone - then a message can be left via email and we will get back to you as soon as we can.
We look forward to hearing from you,
Laura, Kim and Ryan
The MS-UK Helpline team
This month we will be honouring Jason Tilley as our fundraiser of the month!
Jason got in contact with us because he had decided to run the Colchester Half Marathon, both our and his local half marathon on the 13 March!
Being relatively new to running was not a problem. Jason had been toying with the idea of running the Colchester Half Marathon and entered, using the opportunity to raise money for MS-UK a worthy local charity. This seemed like the perfect opportunity to fundraise for an MS charity due to the fact that one of Jason’s close friends was diagnosed with the condition recently and this was a great way to show support.
Jason started his training for the half with 17 miles in the first week and had covered over 150 in training before the start of the event and has even continued to run a little bit more in the week following. Finally running the event in slightly under 2 hours!
After receiving one of our fundraising welcome packs Jason was off with his fundraising like a shot out of a starting pistol! Setting up a JustGiving page right off the bat which saw updates on his running progress throughout his training. Jason also set himself a challenge of receiving £50 per mile of the half marathon in fundraising, but smashed through this target within a month of the Half Marathon and set a new target of £100 per mile! Very close to achieving the target, he is only around £100 off!
Jason had loads of help from friends, family, work colleagues, suppliers and clients with Facebook and LinkedIn posts being a huge help towards his target. His company also helped out in sending out a press release on their website to tell of his fundraising efforts!
We are extremely grateful for all the effort Jason has put in to fundraising for MS-UK and for training and running the Colchester Half Marathon! We’ve loved hearing about Jason and his fundraising efforts and think the title of Fundraiser of the Month is very well deserved!
Well, yesterday we had an amazing day supporting the Colchester Half Marathon – and what a day!
A massive thank you to every single person who ran for MS-UK!
Thank you to everyone who ran, volunteered, organised and promoted the day. It was great fun to be a part of it and cheer on all the amazing runners at the mile 10-11 water station, but we couldn’t do it without our dedicated volunteers.
If you’d like to take part on behalf of MS-UK next year, or volunteer with us, just email Jenny today or call us on 01206 226500.
Love from the fundraising team
In this guest blog, Tom Carr tells us all about his forthcoming challenge in aid of MS-UK…and boy what a challenge! Tom is climbing Mont Blanc, and then skiing all the way down again! Every penny Tom raises will help MS-UK continue our vital work supporting anyone affected by multiple sclerosis…
Well here we are! Just over two months until I make my ascent on Mont Blanc and ski all the way back down.
I am raising money for MS-UK, the multiple sclerosis charity. This is a charity close to my heart, as I am doing this challenge in memory of a beloved family friend, Jane.
As I face the white mountain, that stands at an impressive 4,800m, and face the changing weather conditions throughout the week, I will be thinking of Jane and the family she has left behind (my good friends Tom and Emma), and I hope to do her proud.
My trip is now booked for 01 May 2017 with the preceding days for some last minute training and familiarisation.
Over the last few months I have made several trips to Scotland, climbing Ben Nevis, Ben Lomond, Cairngorm Mountain and ‘yomping’ along with a training mask. I resemble Hannibal Lector from a rather well known film!
My home training consists of mainly running with both altitude acclimatisation mask and a 25kg bag of cement in my rucksack, and of course a few strange looks.
Next Saturday 18 March I’m off to Andorra for some altitude training and skiing. This will keep the ski legs working and hopefully help out with future employment.
The great news is that on 28 March I will be going to Everest base camp for high altitude acclimatisation. This is with the kind support of an anonymous sponsor.
I fly from Manchester to Dubai then on to Kathmandu and again on to Lukla airfield perched on the side of a mountain at 8000 ft.
I will be spending 19 days in all with travel, trekking and climbing.
A further blog on my return!
I’m hoping to raise in excess of £5,000 for the event so please give generously!
You can sponsor Tom today, and read his full story, by visiting https://www.justgiving.com/fundraising/Tom-Carr-MtBlanc