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A big thank you!

Posted on: January 30 2017

a-big-thank-youfrom-all-of-us-at-ms-uk.pngHi all.

We’re here to support anyone affected by multiple sclerosis.

But our vital work would not be possible without you!

Here’s a little video to say thank you. (Check out the outtakes at the end!)

If you would like to  get involved in 2017 just email us or visit our website to find out more.

Thank you again, and here’s to the next 12 months!

Love from,

the MS-UK team

Got a ticket to ride?

Posted on: January 26 2017

20150802_124224-1.jpgHi everyone,

Now, a couple of years ago I spent an extremely lovely day out in London. The sun was shining (I ended up with a bit of a red nose) and the atmosphere was electric. So, what was I doing, I hear you cry? I was cheering on riders in the RideLondon race!

Every year MS-UK has a team of amazing riders who whizz around the capital. Each year, these incredible people raise money for MS-UK, so we can carry on carrying on. Being here to support anyone affected by multiple sclerosis is at the heart of all we do, and cyclists in the RideLondon race help to make this possible each year.

cheeriing-point-_tfl.jpgOK, interested yet?! If so, just get in touch – we still have some spaces left with team MS-UK! We’ll make sure you have everything you need to get riding and fundraising in style!

Call us on 01206 226500 or email berenice@ms-uk.org to find out more.

Hope to hear from you soon!

Best wishes,

laura-sig.jpg

Laura May

Interim Fundraising and Marketing Manager

Meet Berenice...

Posted on: January 25 2017

berenice_sm.jpgHello, I’m Berenice and I have just started as a fundraising assistant at MS-UK. I am keen to help support the fundraising events (Colchester Half MarathonBritish 10K and Prudential RideLondon) for such a worthwhile cause. I am someone who enjoys a challenge and likes to set goals for myself such as walking up Snowdon and completing an OU distance learning degree. I’m not sure what my next challenge will be, I am open to suggestions!

I really enjoy walking around the countryside and looking at nature. I even met my husband at a walking group. Once we got distracted talking to each other whilst leading a walk and we pretended to the others we weren’t lost. Somehow we managed to get back on track and said we were walking along the road to avoid the mud! I am enthusiastic about owls but the problem is I don’t go out at night to see them. I’ll just have to satisfy myself with looking at all the owl ornaments and pictures around my house. If anyone can’t think of a present as long as it has an owl on it, I’m happy! I also like tap dancing and Nordic walking as I like to do fun things to keep fit.

Off to New Zealand this summer?

Posted on: January 24 2017

Hi guys,

As someone who loves to hear about the great things people around the world are doing to spread a positive message about living life to the full with multiple sclerosis, I was really interested when ms. Auckland got in touch about an event they are hosting.

The event, which is in June 2017, will be a charity dinner/auction at Eden Park. This will be a grand event featuring the hilarious Jeremy Corbett as MC and many well-known rugby enthusiasts, including the very special Sir Graham Henry.

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Now, for me this is quite a long way to go (although it does sound like lots of fun!) but if you’re travelling this Summer then you may be interested in finding out more. Just email the ms. Auckland team at events@msakl.org.nz to find out more.

And if you do manage to get to New Zealand, don’t forget to take a mini Myles teddy bear with you and send me the photos!

Best wishes,

laura-sig.jpg

Laura May

Interim Fundraising and Marketing Manager

P.S. Confirmed speakers include Stuart Barnes and Miles Harrison!

Stuart is a former English rugby union footballer, and now rugby commentator for Sky Sports. Barnes played fly-half for Newport RFC, Bristol, Bath; and represented England and the British Lions at international level.

Miles Harrison is the principal rugby union commentator for British television network Sky Sports.

Friends of MS-UK

Posted on: January 23 2017

Hi everyone,

In this life everybody needs good friends, and at MS-UK we are lucky enough to have many thousands of fantastic friends who make our work possible.

We obviously would like to thank everyone who has supported us, but last year in December we invited five very special people to become Friends of MS-UK, an award that recognises the commitment these people have made to helping us achieve our goals over the years.

friends-blog-image-1.jpg

John Simkins – a founding CEO of MS-UK (formerly MSRC) in 1993.

‘As I accept this award, I am thinking of all the people I worked with, whose belief and commitment helped the charity meet the needs.’

Judy Graham – a former editor of New Pathways magazine for over ten years

‘I have done my bit and am proud and humbled to receive this award.’

John Josephs – whose generosity enabled us to open Josephs Court, our wellness centre, in 2012

‘I have been happy to support the wonderful work MS-UK do for people with MS.’

Louise Thomas – who has worked tirelessly over many years to raise funds for MS-UK through the annual David ‘Teddy‘ Thomas Champions Lunch which she co-founded with her late husband, England cricketer, David Thomas.

‘MS-UK is about people and it is about positivity. MS-UK is a lifeline for many people and I am proud to have helped with that in my small way.’

John Trory – who lives with MS himself, has run 15 consecutive Virgin London Marathons to raise money for MS-UK!

friends-blog-image-2.jpg‘I did not get a place in the ballot for the London Marathon and the path led straight to the door of MS-UK. They immediately asked if I could run again for them next year and I said “No”. But it did not take long for me to change my mind. I have run and raised money for them every year since.’

Louise Thomas is pictured here receiving her award from Amy Woolf our CEO at the David ‘Teddy‘ Thomas Champions Lunch held in December 2016.

A big ‘thank you’ to all Friends of MSUK and indeed to everyone who has supported us over the years. We will be announcing the 2017 Friends of MS-UK later on this year!

Best wishes,

amy sig

Amy Woolf, CEO

MS-UK followers show their support for disabled man

Posted on: January 20 2017

A disabled man who recently won a Supreme Court case after a dispute with a woman with a buggy over wheelchair space on a bus has been getting your support online.

The verdict now means that bus drivers will have to do more to accommodate wheelchair users.

Doug Paulley bought his case to court after he was refused entry to a FirstGroup bus in 2012, when a mother with a pushchair refused to move.

Followers of MS-UK followed the story via social media and acknowledged the victory with more than 50 people liking the story online.

Patricia Gachagan commented: “[This was] absolutely the right decision!”

Another follower said: “Well done that man.”

Expressing her frustration at the story, Kim Strydom, said: “Since when did spawning give people such a sense of entitlement? Speaking as a disabled mother.”

The court said FirstGroup should consider further steps to persuade non-wheelchair users to move, without making it a legal duty to move them.

It ruled that FirstGroup’s policy of requiring a driver to simply request a non-wheelchair user to vacate without taking any further steps was unjustified.

However, the court did not make it a legal requirement for bus companies to force non-wheelchair passengers to move from the space.

We welcome your comments on this subject...

Guest blog: Mum's the word...

Posted on: January 20 2017

In this guest blog, Chloe Metson talks about being a Mum and keeping up with her young children while coping with multiple sclerosis at the same time. You can check out her blog, Tantrums and Tingles, online today for more too!


chloe-photo-for-mum-blog.jpgDo you know what happened the other day? Well, I was lying in bed suffering from awful fatigue when I…gave up. I gave up the guilt and stopped fighting being ill. It felt strange, but somehow rather fabulous at the same time. Like a huge weight had been lifted off my shoulders and I felt myself embracing it.

I have two children of 5 and 20 months and as adorable as they are, since E (our youngest) came along I’ve been in a state of constantly trying to keep up. L (our oldest) is now at school which is a help, but having a toddler again when I’m that much older, and that much tubbier, and that much more unhealthy, it’s been a huge struggle. I was diagnosed with MS nearly 16 years ago, and I’ve suffered from at least one relapse a year, which isn’t too peachy when you’re trying to raise a family.

My world became all the more physically demanding once E started to walk, and more importantly, climb. The effort it takes to wrangle him on a day to day basis makes the mind boggle. This kid can cause chaos. But I try. I try my very hardest to keep up with him, which has meant living with MS now has become a case of fighting fires and frankly a logistical nightmare. I spend time with the kids – I’m shattered. I rest and therefore get to spend no time with my kids. I try to socialise…but then I feel guilty for being away from the kids and on top of that it tends to leave me fatigued. Do you see what I mean? How on earth do you please all people, and yourself with limited energy? So I gave up. It’s not going to happen.

For starters the guilt needs to go, so I’ve vowed that now I will take myself off to rest if I need it (obviously if there’s childcare!) without feeling guilty. My children want and need me to be happy and healthy, so taking time to rest properly is not just important, but vital.

I’ll also try and socialise without that guilt, because I’ve finally understood that in order to be happy I need to make sure my life is well-rounded. Socialising and just getting away from the house is just as important as resting in some ways, after all, it’s good for my mental health which should not be overlooked.

To say I’ve stopped caring is perhaps a bit much but it’s a relief to finally have that acceptance of how things actually are. I have MS which sucks, I’m also a Mum though which is the best thing I’ve ever done, and I do my best, which is all anyone can do.


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Guest blog: Black dog winters of discontent

Posted on: January 19 2017

Last year we introduced a series of guest blogs from Robert Munns.

Robert is involved with the Oceans of Hope Challenge, which is an adventure like no other for people affected by multiple sclerosis.

In this series of guest blogs, Robert will take us on a journey right from his own diagnosis of MS, through to now, when he is sailing and supporting others.

So, time for instalment number three…


The summer spent dashing around the Mediterranean gave me such a huge boost to the system. I’d almost forgotten about my diagnosis. Getting sunshine on my skin and being so active allowed me to escape, albeit for a short time.

As I write this in the early new year, the current cold and damp weather is a stark reminder of how much my body misses the warmth and the sunshine. I must say that my vitamin D tablets are being well used. It is during these cold and dark months, it is hard for me to function like I used to. This does upset me.

With all this brilliant and physical lifestyle, I still didn’t appreciate how powerful the black dog of MS was.

I didn’t realise how it affected my daily routine; how it was colouring the mood of every encounter. I was subconsciously ‘denying’ or ignoring the fact that the old Robert was not fully functioning.

I don’t want to dwell on this, but during this period of three to four years, I wasn’t physically restricted, but I was restricted in other ways. My ability to be sociable; my ability to function; my ability to concentrate at work and all these daily activities were affected.

It took a part of me away!

With this stupid, stupid disease, a part of each of us is abruptly taken away from us; inexplicably altering our existence!

So, moving forwards to 2014: I’ve now stopped working the summers on Big Smile, maybe for one of the reasons above.

brighton-marina-jan-2014-post-3.jpgIn September 2013, I started work as one of the managers at the marina in Brighton. We had a great team and because of them, it was generally fun to go to work; every day presented new challenges and situations such as operational problems or very awkward customers and it was my job to come up with solutions.

Then one morning in April 2014, we had a visitor to the marina. A visitor that would have a huge influence on my life ever since.

The visitor was a small team form Denmark; they were preparing for a round the world voyage in a sailboat.

It was a voyage that as soon as I heard about it, I was drawn to it.

The organisation was www.sailingsclerosis.org and the unique thing about the sail was that it would be crewed by people with MS. That was me!

This almost chance meeting sparked my imagination and made me look towards something. I HAD to be part of this in some way. Simply HAD to.

From my perspective at the time, it was very difficult to explain. Retrospectively however, it was a life line thrown to me and I didn’t want to let go. I managed to fill out the application pack and sent it off to organisers.

The people responsible were a Danish foundation called Sailing Sclerosis and the boat they were taking around the world was called ‘Oceans of Hope’.

It was a beautiful, sturdy ocean going racing boat made for the British Steel round the world challenge race in the 1990’s. I was smitten.

 

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I spent that summer secretly looking towards whatever part of the world I wanted to go to and sail near. Dreams of the challenge of crossing the Atlantic, or visiting Caribbean islands or simply crossing the channel were a welcome distraction from the current difficulties at work.

So I waited and followed the boat that was sailing around the world on their website www.sailingsclerosis.org. I vicariously experienced the highs and lows of their lives on the high seas. I spent many a night getting to hear their stories and their progress; constantly hoping that they would get back to me.

August, September, October and November came and Oceans of Hope had crossed the Atlantic. It had arrived at New York; been to ECTRIMS at Boston. They had sailed down the east coast of the states and was heading into the Caribbean.

Then one day in December, I got an email from Sailing Sclerosis. One of the best emails that I have ever received!

I was on board! I was actually going to be part of it.

What made it even more unbelievable was where I would be sailing with them.

For the first time in a long time, I was truly alive and felt that I was engaged with what life is about. I was so incredibly happy.

I would be joining Oceans of Hope in the Galápagos and would remain on board until Tahiti. That’s about 4000 nautical miles and at one point, we would be 1600 miles from land.

A truly exhilarating and scary prospect all at the same time. What an amazing time to be alive eh?

The next blog really starts with my journey to meet the boat and my experiences on board. This marks the start of why I started this blog. My relationship with MS and my perspective of it.

Guest blog: Living with Parkinson's

Posted on: January 17 2017

Hi everyone,

Last year we took part in the 555 Neurology Project with Healthwatch Essex. We asked people from across Essex about their experiences of being diagnosed with a neurological condition, and one such person was Angela.

In this blog, Angela writes about her experiences of living with Parkinson’s. Now, I realise this is not about multiple sclerosis, but I hope you’ll agree that some of the things Angela says here may apply to any long term condition.

What I would really love to do is share some stories of people living with multiple sclerosis…

If you would like to write a guest blog for us about your own experiences, please email John and he will send you our blog guidelines.

Thanks, and I hope you enjoy this blog,

Laura May

Marketing Manager


Living with Parkinson’s – I have a choice

I was diagnosed with Parkinson’s 3 years ago when I was 36. Being told I had a degenerative neurological condition and learning to accept that fact, was most definitely one of the biggest challenges I have faced in my life so far.

So much to take in, so many questions – the enormity of such a diagnosis was overwhelming. Added to that, stress undoubtedly aggravates symptoms, but how can you deal with news like that and not feel stressed?

Parkinson’s, like MS, affects different people in different ways. It’s a very individual condition – symptoms can vary immensely from person to person and so can the treatments that we use to help control our symptoms.

It’s little wonder then, that accepting my condition and finding the best way to live with it, took some time. 

lessons-learned-from-pd.jpg

The turning point for me – when I finally began to really accept my diagnosis – came when I truly understood that I have a choice. I didn’t choose to have Parkinson’s, but I can choose how I live with it. So, I made two important choices:

  1. I am going to do everything I can to look after myself – physically and mentally. I don’t need any other health issues, on top of Parkinson’s
  2. I am going to work on becoming more resilient, so that I will be able to cope with whatever challenges life may throw at me in the future – health or otherwise

These became my priorities. So every other little choice I make on a daily basis, needs to be made with these in mind.

The fact that I have a choice turned everything on its head. Because even when faced with things I have no control over – I can control my reaction to them. It’s all about attitude.

That said, like everyone, I have good days and bad.

Living with a long term condition brings different challenges each day. However, I appreciate the good days more, and I am learning to cope better with the bad days.

Three years on from that day when I was diagnosed with Parkinson’s, I am still learning new lessons all the time, but I am in a much better place. I don’t get as stressed about things as I used to. I can now talk about the fact I have Parkinson’s and how it affects me without getting tearful. I am more grateful than ever for all the good things in my life.

Despite being a fairly reserved and private person, I now help to run a Facebook support group for people with Parkinson’s (Start Living Today PD). I’ve also started writing my own blog about my experiences of living with Parkinson’s. I’m keen to raise awareness about Parkinson’s. It doesn’t just affect older people – 1 in 20 people diagnosed with Parkinson’s is diagnosed under 40.

I’ve learned so much from my Parkinson’s journey so far – and I continue to learn all the time. I hope that by sharing my experiences, I may – in some small way -be able to help other people.

Angela

@livingwithyopd

www.livingwithpdblog.wordpress.com

Fundraiser of the month: Louise Ballantyne

Posted on: January 13 2017

lb_sm.jpgMy name is Louise and I decided to set myself the challenge of 5km every day in December for MS-UK. The idea came to me in November when I was in bed for a week with the flu!

As a regular runner I was bored and fed up with not being able to run, I am not sure what part of me thought such a running challenge only a few weeks later would be a good idea! My Father was diagnosed with multiple sclerosis (MS) when I was just five years old, so 29 years later, I decided it was time I do something for an MS charity. I chose MS-UK because when reading what they do and what their aims are, it made me realised how much it would have helped my family if they were around at the time my Father was diagnosed.

I usually run 3-4 times per week and have never run more than five consecutive days in a row. I did not intentionally train for the event as I ran a half marathon in October and had, apart from when I had the flu, continued running since then but I suppose you could say I have been training since I started running two years ago! I really didn’t know how my challenge would be received. When I started my fundraising web page I did not put a target as I really did not know what to expect but as soon as I told people what I was doing, I was overwhelmed by the support and sponsorship I started to receive.

The challenge as a whole went well but there were certainly ups and downs! I work fulltime and have a four year old daughter so to fit the runs in I did the majority around 6am, which did start to take its toll after a few days!

I documented each day with photos and the number of the day on my hand, which had its challenges, such as working out what way to write the number to ensure it is not backwards on the photograph! The first ten days ticked along well but then my body decided to make it even harder for me by developing a rotten cold and cough thereafter. It isn’t sensible to keep running when you have a cough but I was keeping the pace steady and 5km is not a particularly long distance so I managed to carry on.

Day 17 was a highlight for me. I took my daughter with me for the first part of my run and she managed a whole mile! She enjoyed dressing in some of my running gear and having number 17 written on her hand! She loves her Granddad and enjoyed doing her run for him.

She did spend the next five days complaining of achy legs and so perhaps in hindsight a mile was a bit too long! Day 23 was slightly hampered by being the day after the office Christmas party! Just like not running with a cold, I do not think you are meant to run with a hangover either! Whenever I told people about my challenge they responded in surprise “what, you’re running Christmas day too?!!!” The Christmas day run went well, I got it out of the way at 6am and did quite a quick time so I could get back and check Santa had been. The last week was certainly tricky as my legs decided they wanted to run no more but finally, 31 days later, I made it! 5km x 31 days would have been 155km or 96.1 miles, so deciding that wasn’t enough running I set myself a secondary aim of running at least 100 miles.

In the end I managed 100.1 miles or 161 km and I must say I was rather pleased with myself!

Completing this challenge made me realise how many people will get behind you and support you if you are doing something a) to push yourself and b) for a charity. I was surprised how many people had a family member who has MS or who knows a friend who does, which was another reason why I believe I received so much support.

I certainly have the fundraising bug but I think I will do something in the summer next time!

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