Whether you are thinking of jetting off to the sunshine for a luxury getaway, a cruise or a UK staycation, you can raise funds for MS-UK with every booking you make.
We have teamed up with Give as you Live to bring some great travels offers to you and when booking you'll know you will be raising free donations to help our ongoing work supporting all those affected by multiple sclerosis (MS).
Just visit our Give as you Live page, register and book online through travel companies including Expedia, Thomas Cook, Booking.com, Hotels.com and many more and know that you have raised funds for us at no cost to you.
Thank you and have a great holiday!
In February 2018, there will be a 2 day Switch2Move workshop in London. Open to any Movement Practitioner and Care facilitator, such as gym teachers, dancers, art-therapists, managers in Healthcare, etc. this workshop will offer tools and guidance to encourage novice learners to discover new realms through creative movement. The workshop will be led by Andrew Greenwood, who cofounded the organisation Dance for Health and created education programs specialised for people with conditions such as multiple sclerosis and Parkinson’s.
There will be a free open demo class on the Sunday morning and Andrew would love if any people with multiple sclerosis or other mobility challenges could attend!
If you'd like to take part in this you need to arrive by 10am, and wear comfortable clothes and shoes. This open demo class is free of charge, and you can take someone along with you. It will last up to an hour and half, which includes some time for feedback. Andrew's main aim is to communicate to wider society and especially to the medical world that dance can be a source of health and wellbeing. You can find out more on the Switch2Move website now.
In his latest humorous guest blog Doug Ankerman champions an easy form of exercise for MSers and those of a certain age...
Warning: This post contains pictures that may frighten young children. Please ‘exercise’ caution. People workout for their pecs, abs, bi's, tri's, traps, delts, lats, quads, hammy's and glutes - but they rarely exercise the muscles...of their face! Did you know you have 43 muscles in your face just waiting to be used? Instead, we let gravity take its toll by pulling and stretching our faces downward. Skin sagging...till we begin to look less like ourselves - and more like Droopy Dog! Forget all those age-reducing potions and the creamy-crap you smear on every day. Start looking younger from the inside out by toning up the muscles of your grill. Exercising your face is goofy-fun, easy-to-do and even those of us with MS can do it! I've put on my headband and 1980's Gore-Tex running suit to show you how...
Make your face rrreeeeaaaalll small. Squeezing your eyes shut, pursing your lips like you are sucking a lemon.
Then, make your face big. Big as ever. Eyes wide. Mouth open (watch for flies). And do it over again several times.
Make a face to your right.
And then, take it to the left. Do it again and again.
Wiggle your eyebrows. Puff out your cheeks. Crinkle your sniffer. Smile big. Smile bigger.
Move your lips like you are making out with your favourite movie star. (Mine is Clint Eastwood - maybe I'll rethink that one!) You can't go wrong because ANY exaggerated movement is GREAT for your face. And you'll feel instant results. Your face will be tighter, firmer and toner (wait, is that a word?) You can exercise your face in just two minutes. And you can do it anywhere, except maybe in public! Get started now. You will thank me later. Doug
You can read more of Doug's hilarious posts on his blog 'My Odd Sock'
Hi everyone, We now have places for the ultimate UK cycling event - and you could join #TeamPurple to be part of it!
On Sunday 29 July we'll be cheering on our riders who will be taking on 100 miles of cycling at the Prudential RideLondon-Surrey 100. This is a fantastic event that starts in Queen Elizabeth Olympic Park then follows closed roads through the capital and Surrey before finishing on The Mall in central London. As part of #TeamPurple you'll get all the support you need to have a brilliant day, and we'll be there to greet you at our post-race meet up after you have done all the hard work.
Of course being part of our team isn't just about cycling. It's about helping us continue our vital work.
This year we are commemorating our 25th anniversary of supporting people affected by multiple sclerosis, and we'd love you to be part of the celebrations! Need a bit of inspiration? Read about Paul's reasons for riding last year for MS-UK in our blog. If you'd like to find out more, just give me a call on 01206 226500 or email me. If you're ready to get going, you can apply for a MS-UK place in the Prudential RideLondon-Surrey 100 on our website today. Happy cycling! Jenny Events Fundraiser, MS-UK
In her latest guest blog Chloe gives us an insight into her first year of Tysabri treatment…
I can’t believe it’s been a year since I embarked on my new multiple sclerosis (MS) treatment, Tysabri.
What I started in trepidation has now become my lifeline. It has really transformed my life…but let’s start from the beginning.
As treatments go, it’s pretty non-invasive. I remember the first time well…I was nervous. I used to have a fear of having cannulas put in (after an unpleasant experience when I was younger) so to have one every month was nerve-racking. I sat down in the high backed treatment room chair, my heart fluttering. Heather, my MS nurse, had just started at the MS unit herself, so we were embarking on this journey together.
So after basic observations (temperature, blood pressure) were taken it was time for the cannula. And what a fuss I had made! I had built it up into something awful in my head, but it was absolutely fine. It was no more painful than having a blood test, and I’ve had plenty of those in the past! What a relief it was though.
Once the cannula was in, I was rigged up to my first infusion and we were away. I couldn’t feel anything going in, there was certainly no stinging or irritation, so all I had to do was sit back and relax. Heather joked that it was ‘enforced rest’ for me because, what with the children, it’s very rare that I get an hour in the day to just sit back and read a book.
The infusion took roughly an hour, and then I had to sit and wait for another hour to make sure I didn’t have any ill effects. There were no side-effects for me at all. If anything I felt quite buzzed up! It was probably from the relief!
The whole appointment took 2 hours, and then I was sent on my merry way.
The ‘buzzed up’ feeling lasted a day or two afterwards. I felt stronger and more energetic.
13 infusions down, and a whole year later and I feel like I can reflect now on any positive effect Tysabri has had.
Firstly, I haven’t had a relapse since I have started. I normally have at least one relapse a year, so already that is a very good sign and shows that something positive is going on. I don’t get the ‘buzzed up’ feeling after treatment any more (if anything I come out feeling tired), but every month is the same non-painful and simple procedure.
I can honestly say that I can do more now than before. Tysabri isn’t meant to get rid of day-to-day symptoms such as fatigue, but what it has done has pushed me into a good state of remission. My symptoms are manageable, and being able to do more exercise, I feel healthier. At the end of each month I do find myself flagging a bit, so I look forward to my appointments so I can get ‘topped up’ again.
I am so happy to have found a treatment that finally works for me. I had previously tried Rebif, Copaxone, Avonex, and Tecfidera, but none had helped reduce down my rate of relapses. I was in a bad place with my depression also at a peak, so Tysabri really felt like a light at the end of a tunnel.
But of course, there have to be down sides.
Firstly, Tysabri is only eligible for those who have two or more severe relapses in a year. I was ‘lucky’ in that after two relapses close together I was now eligible to try it, but for years I had just missed out.
Secondly, there’s a risk of developing Progressive multifocal leukoencephalopathy (PML).
Tysabri has its fair share of common side effects (tiredness, headache, muscle pain, to name a few) but a less common and extremely serious side effect can be contracting a brain infection called PML (Progressive multifocal leukoencephalopathy). This can lead to severe disability or even death. A test is done before treatment to see whether you have something called the JC virus. If you are positive, then it increases your chances of contracting PML from 1 in 10,000 to 1 in 1,000.
For the past year, I have been JC negative, so for me the positives outweigh the negative risks. However, would I continue on treatment if I turn out to be JC positive? That’s a really tricky question and one I will have to dwell on if the situation arises. I have met other people on Tysabri who are JC positive, but carry on with treatment anyway, but I’m not sure whether I would feel comfortable taking the extra risk.
That’s a topic for another day though. So far Tysabri has turned out to be a positive experience, and it’s allowed me to take on a new lease of life. I can make plans again without having to worry about cancelling them, I can take the dog for a walk independently and confidently and can play with my children without getting too tired. Long may it continue!
You can follow Chloe’s story at tantrumsandtingles.blogspot.co.uk.
In this guest blog, we celebrate our first Fundraiser of the Month of 2018! Find out more about how Chris Leslie took on a new year's dip in aid of MS-UK...bbbbrrr!
‘Happy New Year’ was still circulating around the web, mobile phones were recovering from meltdown. Some people were recovering from the night before.
No such luxury for me, I had been offered the opportunity to have a new year’s day ‘dip’. It was the good people at Bognor Regis swimming club who offered me space.
I thought this was bit special, so I accepted on the basis that I could raise funds for a charity of my choice, so having done many daft things in the past for Justablefriends and other charities, I decided that this was to be a charity that was really close to me, I chose MS-UK.
A simple choice really for me as I’ve seen what multiple sclerosis (MS) does to people, and the effect it has on people and families. I can’t claim that I can help to find a cure for MS that will help those close to me, but I can raise a few pounds to help towards the support work that MS-UK get involved with.
So, I set up the link to donate to my Page for the charity. I then got on social media, and it turns out that there were a lot of people either affected by MS, or, who knew someone that was. Alternatively a lot of nasty people that just wanted to see me get cold!
When I realised that this was the case, (that there were a lot of people affected by MS) I contacted MS-UK to let them know what I was doing. They provided the shirt for me that I just about managed to squeeze into (too much turkey I think over Christmas).
At the time of publishing this, running total for funds raised is £195 plus gift aid, with some more pledges to come. So my big thank you goes to all those that sponsored me, thanks to the swimming club for making it happen (unofficially) and also to MS-UK for the chance to tell people about the work they do.
And just before it gets too late, ‘happy new year to you all’ and if you talk about doing something like this, follow it through, because the feeling is great (the cold isn’t).
Wes Javis tells of his fundraising efforts to boost his Virgin Money London Marathon total for MS-UK and offers some tips on getting those all important funds...
Less than sixteen weeks to go! That was the somewhat terrifying realisation that came to me after the indulgences of Christmas. In less than four months, along with so many people with such inspiring stories to tell, I’ll be lining up to run the Virgin Money London Marathon – something that I’ve always wanted to do, and to have the opportunity to run for MS-UK is just fantastic! I’ll be running in memory of my Nan – she lived with MS for around 20 years and was bed-bound for the last 10 years of her life. Despite her cruel reality, Nan was always upbeat, always saw the bright side, and always wore a beaming smile. It is a smile that I’ll never forget and she is the reason I am motivated to take on this challenge.
When I first realised that I’d be running the marathon I pulled together a quick fundraising schedule. I belong to quite a small, close-knit friendship group and three of us are running in London for different causes. Rather than competing in our fundraising we decided that it was in everybody’s best interests to collaborate in our events to maximise our fundraising potential. To date we’ve organised three large events, all of which proved to be fantastic successes and surpassed our expectations!
On 12 August, we kicked things off with a golf day as we knew that after August there would be even fewer guarantees with the Great British weather! We contacted a few local courses and found one close-by which offered great rates for good causes. We negotiated a great price for breakfast and lunch with two rounds of golf – they even threw in a pint of beer per head! The turnout was fantastic and we maximised our income by running a small raffle, and a few competitions including ‘longest drive’ and ‘nearest the pin’. After splitting the proceeds three ways we made a great early contribution towards each of our targets.
Then came our afternoon tea event on 23 September. I’ll be honest and say that we initially came up with this one after scratching our heads about what the ‘mums would like’! The reality was quite different and we needed a bigger room than anticipated after a great response from colleagues, family, friends and even friends of friends. Again, we located a venue that offered us a private room for free and a reduced cost per head. Another small raffle helped us on our way – pestering local businesses for prizes has really paid off and each raffle has raised nearly as much as the events in their own right – a great way to raise extra pennies and to have a little fun doing it!
Our Curry Night on 10 November was our most recent event, and the biggest yet by far! We found a local restaurant. We set it up as a public event on Facebook and once again the response was incredible, on several occasions we increased our booking until we reserved an entire floor! Somewhere in the region of 200 people joined us for what was a great fundraiser. We’d taken deposits, so even the handful of people who didn’t make it on the night contributed to our total. Our third raffle included an iPad, donated by one of our employers, which generated huge interest and took our combined profit on the night to £1,600.
We may look to run a further event in the next few months, but equally we may avoid doing so to give our poor friends and family a well-earned rest!
If I can take any key messages away from the fundraising experience so far, or pass on advice to any of the other MS-UK fundraisers, they’d be:
In October last year, we launched MS-UK Counselling, a brand new service for people living with multiple sclerosis (MS). We were delighted to welcome Nileema to the team as our Counselling Coordinator, and in December Jonathan and Wendy joined the team. We are all BACP registered or accredited, have many years of counselling experience and are trained in working with people with MS. So we think it’s time you get to know the latest additions to our team!
Hi, I’m Nileema. My interest in counselling started when I first had counselling myself over twenty years ago. I saw the massive difference that counselling made to my life and felt inspired to train as a counsellor many years later. I have found that no matter what the problem, there is a space for it in counselling. I have worked with individual and couple clients. I also provide training and clinical supervision to counsellors. I was really excited to join MS-UK in September 2017 to lead this exciting new service. My role is to run the service, carry out assessments with clients, ensure that we are legally compliant and work to high ethical standards, as well as provide counselling.
Hi, my name is Jonathan. I decided to train as a counsellor after appreciating the importance subjectivity plays in our lives, and the uniqueness this holds when attempting to understand our circumstances. I am an integrative counsellor and have particular interest in the role that attachments play in our lives. One of the principles I strive to offer is autonomy, which is the respect for the client’s right to be self-governing. My intention is to offer choice to the best of my abilities, and aim to reflect this through a discussion of your expectations during our work together.
Hi, my name is Wendy. I used to work as a learning support teacher and I became aware at the time of how children and their families needed additional support through counselling. I am a qualified person-centred counsellor here at MS-UK. I am really keen to support clients by helping them understand themselves in light of their MS. I have experienced the value that counselling can offer each individual through my own personal circumstances. As a team, we are proud to be offering the only counselling service of its kind across the UK. We believe that by listening to people affected by MS, we can shape a great service and offer something that people need and want.
Hello, We are updating our Choices leaflets about diet, Primary Progressive MS (PPMS), speech and swallowing, visual symptoms and Low Dose Naltrexone (LDN). But we need your help! If you have a diagnosis of multiple sclerosis (MS) please take our survey and share your experiences to help us shape the leaflets. We hope that by including your experiences, our leaflets will truly resonate with people who turn to us for help. Please be assured that any comments you give us will remain anonymous when published in our Choices leaflets.
Thank you for your help! Best wishes,
The MS-UK Helpline team
Colchester Marks & Spencer ended the year with a great finale of fundraising events for us. In December they organised for volunteers and MS-UK to take part in some festive bag packing, and local singing groups The Harmonettes and CO2 theatre group performed for the three weeks in a row in store to get shoppers in the Christmas spirit!
It was great to see how happy customers were for having help with packing their food shopping and gifts, and the singing groups enjoyed entertaining the crowds with Christmas tunes. Over those three weeks, a grand total of £839.06 was collected by M&S in aid of MS-UK – which is absolutely fantastic!
We would love to say a huge thank you to our volunteers, The Harmonettes and CO2 theatre group for giving up their time to raise vital funds for MS-UK. Every penny raised by Colchester Marks & Spencer throughout 2017 will help us continue our work supporting anyone affected by multiple sclerosis (MS), which is a disease of the central nervous system.
Approximately 100,000 people in the UK have multiple sclerosis and MS is usually diagnosed between the ages of 20 and 40. MS-UK is dedicated to empowering people affected by multiple sclerosis to make the most of today, and live life to the full, so a really huge thank you to Colchester Marks & Spencer for supporting us to make this possible!