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Baby its cold outside – 5 top tips

Posted on: February 28 2018

img_0412.jpgWith most of the country feeling the big freeze, here’s our top tips for travelling safe and keeping warm…

  • Obviously and first on the list – don’t go out unless you really have to. Even if it looks like fresh snow, chances are if it’s been snowing for a few days there will be ice underneath. If you’re really in need of something from the shops, call your friends and family and see if they can pick some milk up for you
  • If you need to go out, wear a pair of shoes that have a thick tread. This will give you as much grip as possible when trudging through snow, ice and sludge
  • Layer up – even if heat is not your friend and upsets your MS if you wear layers you can take them off or put them on as and when you need to
  • If you have to take the car, check and plan your route. If you plan your route using Google maps, you can zoom in and it will show you where the traffic issues are
  • Also, take some supplies – You could get stuck in traffic for a long time and at worst stranded in your car overnight so make sure you take a supply of medication, water, food, blankets, de-icer, and a shovel

Find out more about our services to support people affected by multiple sclerosis (MS) on our website.

Guest blog: A marathon with Mum in mind...

Posted on: February 23 2018

vlm-e-news-image1-10.jpgAs my first long distance running event (or running event in general in fact)…I decided that I wanted to challenge myself and run the London Marathon 2018! Fully aware that this is going to be a great personal achievement, I figured to make it even more worthwhile, I would raise money for charity at the same time, so people are not only supporting me with my running but supporting a great cause!

I have chosen MS-UK as the charity which I am raising money for, for the support which they provide to those suffering with multiple sclerosis. My mum, who is also my best friend, suffers from MS and even though she never complains and shows unbelievable strength and fights her illness; I know how it can affect individuals, and it means a lot to my mum that I am doing this with her in my heart and mind, along with others in her position, as my main motivation.

In order to raise the £2,000 I am receiving great support from my friends, family and work colleagues via my ‘JustGiving’ page. I am putting on some fundraising events such as pub quiz in local village pubs, raffles with prizes which have been generously donated including tickets to Ipswich Town Football Club home match and Woburn Safari Park! I am also putting on a fashion show at a nearby M&Co. store (Diss, Norfolk)!

Although I have regularly attended the gym for a long time, I am new to long distance running outside until about November 2017. I have been following a 16 week marathon training programme ‘Beginner to Winner’ and I am very much on track with it all; I have also been attending Spin, Yoga and Pilates classes to help with my training. I am completing Colchester Half Marathon in March which fits in perfectly with my training schedule and again is all in aid of MS-UK!

Now the count down to the big day, and I have ascertained that it will be here in no time at all!

Jasmine Mulley, 24, Suffolk 

Based in Essex? Volunteer on your doorstep!

Posted on: February 22 2018

vlm-e-news-image1-6.jpgHello, The Colchester Half Marathon will be taking place on Sunday 25 March and MS-UK has been chosen as one of the charities to benefit from the funds raised from the event! We are really excited to be part of the big day, and I would like to invite you to join us! You could volunteer to be a marshal, help us cheer our hearts out at our water station or come along to Weston Homes Community Stadium to greet runners with a smile and good luck before the race begins. It is a truly brilliant day, and cheering on #TeamPurple is really rewarding.

Ben, who volunteered with MS-UK at last year's Colchester Half Marathon, says... ‘I have been volunteering at events with MS-UK for a while, but Colchester Half Marathon is right on my doorstep so last year I joined the MS-UK team who set up at the water station at mile 11. The atmosphere was buzzing! The runners really need a final boost near the end of the race, and I felt really proud to be part of the MS-UK cheer squad who gave them that – many runners also gave us a round of applause, which was brilliant!’

So if you, your friends and family want be part of a day to remember please get in touch! You can email Catherine or call us on 01206 226500. Here's to another fantastic event on our doorstep! Jill Jill Purcell, Fundraising Manager

Pins for pounds!

Posted on: February 21 2018

vlm-e-news-image1-2.jpgHello, This year is very special for MS-UK as we celebrate our 25th anniversary of supporting people affected by multiple sclerosis! So, how can you get involved? Well, you could be the proud owner of one of our limited edition anniversary pin badges! In 2018, we have a limited edition 25th anniversary pin badge especially for anyone who raises or donates £25 or more in aid of MS-UK! Whether you love getting active or prefer a cuppa and cake, fundraising for MS-UK is as much fun as you make it! Ways to support MS-UK…

Whatever you decide to do, we’re here to support you all the way. Contact the fundraising team using our online form. And good luck! Jill Jill Purcell, Fundraising Manager  

Guest blog: It’s all about attitude…not age!

Posted on: February 19 2018

In her latest guest blog, Joanne discusses preparing for her son’s start at nursery and coping with a multiple sclerosis (MS) flare…

joanne-pic-small.jpgLittle man has another development milestone coming up, going to nursery.

It doesn’t seems two minutes ago, he was putting his head up, sitting, then eating real food, walking then speaking.

Little man is only going to nursery for a couple of days but it’s a big step for him, an even bigger one for me.

He was going to start this month but due to illness (me mainly, we had bugs which take twice as long for me for them to shuffle off and also I’ve had a flare up, hence little writing, sorry). I wasn’t in the right place to start. It’s about little man settling in, but also as a new routine for him, l have to be ready too.

To prepare, we’ve been reading books about starting nursery (I’d recommend Spot and Pirate Pete). I’ve also been potty training (not a necessity).

I put a post on social media to see what may be useful. Everyone’s suggestions were helpful, recommending:

  • Spare clothes
  • Bag with his name (my friend is kindly making one)
  • Stick on name badges
  • Waterproofs for wet, muddy days (puddle suits are good, apparently)
  • Wellies
  • Slippers
  • Tell the nursery manager about me
  • Understand parking
  • Understand security
  • Understand any policies
  • Don’t stress!

I saw a quote from Rosalind Dorlen, which said ‘handling chronic illness is about learning to live in balance’.

I remind myself of this. I thought I’d do lots before this milestone. The toughest part is beating yourself up about expectations. Learning to live in balance. Good days, you act like super woman, and on bad days, you feel like a rubbish mummy for not having any energy to do anything and switching CBeebies on again (a god send!)

Frustration kicks in. My flare up has caused me to fall a few times, my mobility rubbish, writing poor, fighting fatigue and generally feeling like what’s in the potty! As a mummy, I still have the same challenges but as a mummy with MS it is harder. Putting my needs ahead of little man’s and Daddy isn’t easy but a necessity. Getting the right support from family, friends, support groups and social media contacts all help. But I find it hard to ask or accept help. I know I need to do better!

I’m hoping nursery will be the right development milestone for little man, and also for me. Or at least my muse for writing.

I’d love to hear how you tackle development milestones (no chronic illness required).

Joanne

Fundraiser of the Month: Kimberley

Posted on: February 16 2018

20170916_130921.jpgIn this Fundraiser of the Month blog, Kimberley tells us all about becoming one of the first 500 people to enter the London Classics Hall of Fame...all in aid of MS-UK!

I’m a bit of a have a go girl…I’ve done marathons, swam up to 10km in a river, triathlons up to iron distance and I do love a challenge, particularly if you end up with some serious bling to keep! In among that, I am the sister/daughter of two amazing family members who lived their lives with multiple sclerosis (MS) and while they are no longer here I am still inspired by them to keep on ‘having a go’ and also raise awareness for MS-UK who offer amazing support.

Having completed the Virgin Money London Marathon in 2005 and 2006 and RideLondon in 2015 I was really excited to see the launch of the London Classics at the Swim Serpentine Event last year. 

You could earn a fourth bit of bling – serious bling too – for swimming in the 2 mile wave of the Swim Serpentine event. So I entered! I was one of the first 500 to complete this spectacular trio and earn two medals in one day! We were also able to earn a place in the ‘Hall of Fame’, which will grow every year now.

So, if you have done one of the events, or two, then try to complete the third as a personal challenge and earn the most amazing bit of bling and bragging rights too!

It also adds a unique twist to your fundraising strategy as not many will achieve this goal very quickly. So just go for it and bring on the bling! Yours in sporting bling Kimberley!

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Primary progressive multiple sclerosis patient set to end his life is saved by another MSer

Posted on: February 15 2018

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Sarah-Jane, Editor of New Pathways magazine

Yesterday evening, BBC One’s The One Show aired the story of one MSers decision to end his life at Dignitas in Switzerland.

 

Colin Campbell, 57, from Scotland was diagnosed with primary progressive multiple sclerosis (PPMS) in 1995. In the knowledge that his MS would get progressively worse he had decided that “another winter would be unbearable”. He had chosen 15 June as the day he was going to die. He didn’t want to be alive and more disabled than he is now. His story even made it onto a local Scottish news channel. Little did he know that just half a mile down the road from where he was living a stranger was watching - another MSer Rhona Tynan. She had watched his story and decided that she “couldn’t let this man go ahead and do this without trying”, so she phoned up the TV station and got in touch with Colin. She asked him to come and see her and how she was coping.

“I just wanted to see if I could help him see if things could be better,” she said.

Colin did go and see Rhona and they formed an unexpected friendship. After spending two “enjoyable” days together and after discussing things with her Colin decided to cancel his 15 June appointment in Switzerland. Seven months later, Colin discussed how meeting Rhona had changed his life. He said: “My flat had become a prison. I couldn’t get out, there were two flights of stairs. You lose the will to live.

“No one had explained to me what options there were,” he explained. “If Rhona hadn’t have contacted me that would have been it for me on the 15 June. It would have been all over,” he added.

Rhona said: “It became very clear to me that Colin didn’t have the correct support for quality of life.” “I know a scooter gave me quality of life because it allowed me to get out and about. Colin didn’t have one and he didn’t know how to go about getting one.” So they decided to have a day out together trying out and testing some scooters. But getting a scooter was just the beginning. He also found out that he was entitled to a ground floor accommodation and 24-hour assisted living. Inspired by her relationship with Colin, Rhona has now set up a networking group for other people who have found themselves in a similar situation. Rhona has also recently been to Mexico for stem cell treatment and is seeing positive results. She talks about her improvements on the show and has most recently managed to walk 50 steps while holding her husband’s hand, something she wasn’t able to do before the treatment. If you missed the show, which aired at 7pm on 14 Feb 2018, and would like to watch the full interview visit the BBC iPlayer and scroll through to 32:40 minutes. If you would like to read more about assisted dying, subscribe to New Pathways magazine issue 107 and read a great piece written by Journalist and progressive MSer Ian Cook, as he discusses your right to die. New Pathways is a magazine for people living with MS. The much loved title has been running for 25 years and is a great source of information and support for many MSers. To subscribe click here, or call 01206 226500.

Guest blog: Fiona's two truths and a lie!

Posted on: February 15 2018

fiona.jpgFiona Sakal, who has been a Trustee of MS-UK for over decade, recently joined us in the office for a week to see what we do to support people affected by multiple sclerosis (MS) on a daily basis. We couldn't resist asking for an interview, and we started off with a 'two truths and a lie' question...

Two truths and a lie…
I was born and raised in Germany
I qualified for the Olympic Equestrian team
I was Cabin Crew, based at London Heathrow

Read on to find out all about Fiona…

I joined the board of MS-UK in 2007, when we were still MSRC and working from Peartree Industrial Estate with three car parking spaces, one toilet and not enough windows. My brother-in-law had MS for 24 years and although I was not fortunate enough to meet him, the impact his condition had on the rest of the family remains, so I was delighted to be asked to join the Board of Trustees.
Obviously, I was full of enthusiasm and committed to running the Virgin Money London Marathon the following spring! I definitely did not take into account the enormity of the training schedule that had to fit in alongside my final law exams, a full house renovation and a wedding. Ten years later and

I am almost ready to commit again, but not quite!

When Peter and I married in 2008 we decided that we would like to raise money for the charity rather than receive gifts. We were overwhelmed by the generosity of family, friends and clients and with the help of Roger Dakin and a game of heads and tails at our wedding reception, we raised £12,000.

Fast forward 11 years and two little girls, I am still as passionate about MS-UK as ever and love to get involved wherever possible. Under the leadership of Amy, the charity has grown to such an extent that I was beginning to need a flow chart to understand how everything fit together and wasn’t confidant that I was able to contribute effectively as a trustee. So here I am!

I have really enjoyed my ‘work experience’ and have found it invaluable to get to know everybody and experience first-hand what each role entails, both in the office and at Josephs Court. The atmosphere is very warm and welcoming and it is clear that everyone has a real passion for what they do. I am incredibly proud to represent MS-UK and excited to see what we can achieve in the future.

So, what was the lie?

I qualified for the Olympic Equestrian team!

The winner takes it all!

Posted on: February 14 2018

Hello, I am really pleased to announce today that we’ve launched a brand new way for you to support MS-UK – and you could be a winner!

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We’ve teamed up with make a smile lottery to offer a really easy way to help our work supporting people affected by multiple sclerosis. There are weekly cash prizes to be won, with a first prize of £250!

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You can join online and pay by either monthly direct debit or by card, so you choose how you play. And for every £1 play, 60p will come directly to MS-UK!

So, do you feel lucky? Roll up and play!

Good luck!

Jill

Jill Purcell, Fundraising Manager

Anyone can enter; you just need to be over 16 and living in mainland Great Britain. Please play responsibly.

Legal terms

make a smile lottery, 9 The Courtyards, Phoenix Square, Wyncolls Road, Colchester, Essex, CO4 9PE. Telephone 0300 303 4500. Email hello@makeasmilelottery.org.uk. Visit www.makeasmilelottery.org.uk. You must be 16 or over to play make a smile lottery. Please play responsibly. Responsible gambling support: www.begambleaware.org. make a smile lottery is wholly owned by St Helena Hospice, a charity working with other charities to raise much needed funds. Promoter: St Helena Hospice trading as make a smile lottery. Licensed by the Gambling Commission Number 000-004685-N-306842-006 www.gamblingcommission.gov.uk. St Helena Hospice is a company limited by guarantee. Registered in England and Wales Number 01511841. Registered Charity Number 280919. Registered Office: Myland Hall, Barncroft Close, Highwoods, Colchester CO4 9JU.

The ultimate Valentine's Day gift that keeps giving!

Posted on: February 12 2018

val-day-1.jpgHi,

Racking your brains for the ultimate Valentine’s Day gift? Well, now is the time to think about what your loved one would really like to do. Would they enjoy a dozen red roses, or a dozen reasons to smile? If it’s the latter, I have some ideas for you…

Take the plunge

Love is most definitely in the air when you’re at 10,000 feet, so what better gift is there this Valentine’s Day than arranging to take your sweetheart to new heights with a skydive? You can pick from 19 airfields across the UK and a date that suits you, and by fundraising for MS-UK you’ll be making a real difference to our work supporting people affected by multiple sclerosis.

A bicycle made for two?

Cycling is a great way to have fun together and raise funds for MS-UK at the same time! Whether it’s organising a tandem bike ride in your local area or taking on the capital at the Prudential RideLondon-Surrey 100, you and your Valentine can do it together. We’ll be here to help, with lots of fundraising materials and of course a MS-UK cycling jersey for you and your beloved.

Book a night to remember

Is there anything more romantic than getting dressed up in your finest and enjoying a delicious three course meal in luxurious surroundings? If you want to ask for that last dance, why not book your tickets for the MS-UK Summer Ball? I know this will be a truly magical event hosted at Le Talbooth in Dedham on 29 June 2018, so surprise your Valentine with tickets and the promise of a fantastic evening out!

If you’d like to chat through a fundraising idea or find out more about any of these events, just email me or call me on 01206 226500.

However you celebrate Valentine’s Day, I hope it is filled with smiles for you!

Jenny

Jenny Poulter, Events Fundraiser

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