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Friends of MS-UK Awards 2018 - Miss Sparkle!

Posted on: August 10 2018

Suzy Cohen.pngMeet the winners of this year's Friends of MS-UK Awards!

Every day this week, we'll be revealing each of the well-deserved winners and finding out, in their own words, what it means to be awarded such an accolade...

Suzy Cohen aka 'Miss Sparkle'

Since 2011, ‘Miss Sparkle’ has been inspiring those around her to support MS-UK. Susan has raised over £21,000 for the charity and has run eight marathons, not to mention taking part in many other events! Above all, Suzy has made an amazing achievement this year, as she has enabled MS-UK to reach out to 28 new supporters, all of who are runners Suzy has recruited into the Virgin Sport British 10k event.

Susan has always been surrounded by multiple sclerosis (MS), through friends and family, and chose to fundraise for MS-UK because we offer practical, unbiased information and support to anyone affected by MS.

She said: 'This award comes as a little bit of a surprise, but I feel very humbled to even have been considered. I’m just doing what I do best and that’s running, then boring everyone so much that they sponsor me just to shut up! I’m looking forward to receiving the trophy, which I will display very proudly next to my ‘MS-UK sponsor me’ table where I work, I’m sure people will feel even more generous for future events.'

 

Run for MS-UK

Friends of MS-UK Awards 2018 - The Many Marathon Man!

Posted on: August 09 2018

Meet the winners of this year's Friends of MS-UK Awards!

Every day this week, we'll be revealing each of the well-deserved winners and finding out, in their own words, what it means to be awarded such an accolade...

Chris C.pngChris Chandler

When Chris’ wife Jennie was diagnosed with multiple sclerosis (MS) in 2011, they turned to MS-UK for help. Since then, Chris has run in aid of MS-UK...and run, and run, and…

In 2013 Chris ran the Virgin Money London Marathon and since then he has applied dedication (and endless hours) to reaching an amazing milestone – completing 100 hundred marathons in aid of MS-UK. That’s over 2,500 miles!

This year, Chris officially joined the 100 Marathon Club when he completed his 100th run at Betteshanger Country Park.

He said: 'I am delighted to receive this award, it was a nice surprise. It has been a pleasure to help raise money for MS-UK and watch them grow and develop over the years. I have fundraised for them and see how the money myself and others raise goes to good use.'

Alternatives to residential care

Posted on: July 26 2018

Residential care.PNGFeature writer Rachel Coleman used to be a fulltime carer. Here she talks care choices.

Being diagnosed with multiple sclerosis (MS) can be a life-changing event. It can be a lot to take in and making sense of what it will mean can be daunting. You may be concerned about what this means for the future and whether you’ll have to move into a residential care home to get the support you need.

Even with growing support needs, it is possible to stay in the comfort of your own home. Private home care providers offer flexible support options on a visiting basis and even in the form of a live-in personal assistant, enabling you to have the best quality of life.

Let’s take a look at the alternatives to residential care.

Flexible support at home

MS can cause difficulties with mobility and communication. This can be incredibly frustrating for anyone living with the condition and these difficulties can pose unique issues, particularly with friendships.

Though a residential care home does offer round-the-clock support, for someone living with MS letting go of their home comforts and independence can be incredibly unsettling.

With home care, you can stay in the environment you know the most, with the same routines and friends and family nearby who can visit whenever they want.

Caroline Redman is Head of Customer Service at Helping Hands, and helps to arrange support at home for people living with MS. She says, 'We place a special focus on creating support plans that are flexible and completely built around each person’s unique needs. Whether they need visiting support at mealtimes, help first thing in the morning or late at night, all the way through to a handpicked personal assistant who’s there 24/7 and supporting with getting out and about and other day-to-day activities.'

This article is taken from issue 109 of New Pathways magazine. To read the full article, subscribe today!

Diana defeats the Yorkshire Three Peak Challenge!

Posted on: July 25 2018

07.2018 - DC Yorkshire 3 peak challenge (7).jpgClimbing three mountains is harder than climbing one. That's just basic maths. In our latest blog, Diana, Head of Services here at MS-UK, tells us how she beat the Yorkshire Three Peaks Challenge...

On Wednesday 23 May I received a text from my husband saying he was organising the ‘3 peaks thing’ as a fundraising event for his employer’s charity of the year. He said ‘it’s hard work but doable’ and ‘it’ll need quite a bit of training’! I casually agreed to it as long as I could fundraise for MS-UK.

Now, I consider myself to be quite fit. I play netball once a week and had recently completed the NHS Couch to 5K programme, running three times a week until the heatwave descended upon us.

07 July saw our training walk in Sussex – the Seven Sisters walk in 30 degrees heat while England were playing their quarter final against Sweden in the World Cup. It had been graded 9 out of 10 in terms of difficulty. After the 12 miles we completed I had nothing left in me. But my husband threw a Mohammed Ali quote at me ‘Train hard – fight easy!’.

5am on 21 July we are up and heading to the start line of the Yorkshire Three Peak Challenge. Our kit was checked and a briefing given and we were off. 24 miles in 12 hours was the challenge, reaching the summits of Ingleborough, Pen-y-ghent and Whernside. Being extremely competitive I started off keen but after finishing the first peak I wondered how I would ever complete the challenge.

Our group leader, a professional mountaineer encouraged us by calling us his ‘Warriors’! No time to rest, no time to take in the views, we just had to power on. Regular painkillers for the dodgy hips and we soldiered on.

I have to say this was the hardest thing I’ve ever had to do, but whilst I had my head down, and I was quietly battling my fatigue, I remembered why I was doing this challenge. As Head of Services at MS-UK I am inspired every day by people affected by multiple sclerosis. They were my motivation and what got me through.

I managed to complete it in 11 hours and 03 minutes and so far I have raised over £300 for MS-UK. Here is my fundraising page if you would like to sponsor me.

My inspirational husband spurred me to run the Virgin Sport British 10k

Posted on: July 17 2018

Julie Squires.jpgIn our latest guest blog, Julie Squires tells us about why she decided to run the Virgin Sport British 10k at the tender age of 50.

I met my partner David 13 years ago on 02 July 2005. He told me straight away that he had multiple sclerosis (MS) and to be honest, at that time, I knew little about the illness.

We went out on a Saturday night but David had told me he couldn’t have too late an evening as he was up early Sunday to run the Virgin Sport British 10k raising funds for an MS charity.

I knew I must have liked him a lot as I dragged myself out of bed at 6am to head up to London to watch him run!

So when I decided to take up running earlier this year at the grand old age of 50, David said it would be good if I ran the Virgin Sport British 10k, just like he had 13 years ago. This gave me something to focus on (as when I started I couldn’t run to the end of the road, never mind 10k)! But here I am, seven months later, running 10k at least once a week thanks to the ‘Beginners to Runners’ Ashford Club and David for giving me something to aim for. 

David was diagnosed with Relapse Remitting MS when he was 32. I didn’t know him then but can only imagine the shock of learning something so life changing.

David has pushed himself to make the most of what he is able to do now rather than putting it off until later, which we can all be guilty of. Since I met him he has achieved so much in defiance of his MS.

He got his motor racing licence, he’s taken up cycling and keeps himself as fit as possible. He wouldn’t be able to run anymore, but he has found other things to do to make sure he’s as fit as he possibly can be.

So this one’s for you David Williams. You are a true inspiration. You are always so positive in the face of this horrible illness. Yes, there are hard times, but we get through them and our beautiful son and I could not love you more.

Guest Blog: Spencer tells us about him and Michael making ‘the impossible possible’

Posted on: June 25 2018

Spencer Freed and Michael - Total.jpgIn this guest blog, Spencer Freed, a personal trainer from Brixworth, tells us all about how he supported his friend Michael Niblett (who lives with autism) to take on a marathon!

'I met Michael 14 years ago through his mother Dinah as she was aware that I was a personal trainer. She approached me and asked if I would be able to train him. I was made aware of Michael’s autism and became determined to give this fine young man the opportunity to get fit within different environments such as the gym and running outdoors.

'As he gained confidence with me and in different social surroundings Michael agreed to enter a local six-mile running event in Northampton for some fun and as a focus to train. He managed to complete it and seemed to enjoy the feeling of achieving something.

'From this we decided to increase the distance as he developed trust in me. We went on to complete a Daventry 10-mile event and The Hyde Park Half Marathon in 2011. We raised funds for The Autistic Society, approximately £1,500.

'I certainly had the belief that Michael was capable of anything, and towards the back of 2017 we had a brief discussion about entering him into a marathon. Making the impossible possible was to be my mission in the year of 2018 and I suggested the Milton Keynes Marathon would be realistic in May. We certainly had the weather against us at the start of the year with snow still falling in March which delayed our outdoor sessions somewhat. We literally had eight weeks of preparation leading up to the big event.

'Over the course of eight weeks Michael had to face so many barriers when training for the marathon. I had to ask him to change what he eats and when he eats, run during unusual times of the day and at weekends. Due to his autism this was not an easy task, but he trusted me and was able to overcome these difficulties. We successfully managed to train up to 20 miles and felt as ready as we could be leading up to the event.

'Two weeks before the event we decided to raise some money for charity. I suggested that we could run for MS-UK as my working colleague lives with MS and was fully aware of the effects and problems it has on an individual and families supporting this. We set a low target to begin with and as the money came in it soon become obvious that friends, families and the general public were right behind us and they loved our commitment, passion and ambition to complete such a mammoth task.

'On the day of the event, 07 May, it was to be one of the warmest bank holidays on record. We had this against us and at mile ten of the race Michael became affected by the heat and fell to the concrete. I felt devastated for Michael and thought that he was unable to carry on for a brief moment. But through positive talk, motivation and his determination Michael got back onto his feet and together we managed to complete the next 16 miles. It was undoubtedly one of the most challenging tasks I have ever done and to Michael a magic moment to savour for the rest of his life. It was a stadium finish with the crowd, family and friends behind him. He finished in six hours and six minutes. The emotion we both felt was beyond words. We did it!

'We made the impossible possible.

'Following the event it soon became clear that our target amount of money raised was totally smashed. We ended up raising over £3,000! It is so difficult to put this into perspective and we were totally blown away by everyone who supported us and offered kindness to us both.

'We have recently returned back to our regular training regime and Michael is absolutely certain he does not want to do it again next year! He keeps reminding me of this every time we head of out on a run!'

 

What type of volunteer are you?

Posted on: June 22 2018

Just like fingerprints, no two volunteers are the same. We at MS-UK should know! Over the years we've met countless, kind-hearted individuals, each one incredible in their own special way, who didn't think twice about helping us out in the office or at events. After some careful analysis, we've come up with a list of the most common types of volunteer. Where do you fit?


2_3.pngThe Happy Clapper

You’re most at home cheering people on from the sidelines. You can clap so fast that your hands break the sound barrier, the rumble of your applause rolling in late like thunder after a flash of lightning.  No one has to say ‘cheese’ to make you smile. Your enthusiasm can make runners run faster, cyclists cycle further, and skydivers dive like they’ve never dived before.


3_3.pngThe Brain

You’re a walking desk diary. Your brain is a well-oiled organisational machine that clanks and whirs through a million memories at once. You know what time people have to arrive at events, what time they have to leave, how everyone takes their cups of tea and how many paperclips are left at the event sign-in desk. With you at the helm, no one is missing the minibus home.


1_3.pngThe Octopus

You are the ultimate multi-tasker with fingers in a thousand pies. When event day rolls around you can be found everywhere. One minute you’re greeting marathon runners, the next you’re dishing out fizzy drinks at the post-race party. Nobody knows how you manage to be in five places at once. There are hushed rumours that you are actually one of identical quadruplets, but you’re so useful nobody wants to find out if it is true and run the risk of you leaving for good.


4_2.pngThe Guru

You’re a calming force of nature. Your voice is a babbling brook and you’ve turned listening into an art form. When people raise money for MS-UK, they’ve usually got a reason and a great story to tell, and they want to share that story with you. Perhaps you possess the aura of a storyteller yourself? Or maybe you’re just always in the right place at the right time? Whatever the reason, by the time you’ve managed to put your feet up after a day of volunteering, you’ve got enough anecdotes swimming around your head to write a novel the size of a doorstop.


5_0.pngThe Iron Chef

Your aim is simple… To feed everything that moves. Your pockets are always filled with sweets and your bag bulges with ham and cheese sandwiches freshly made the night before. You dish out water by the gallon, each bottle ice cold even in the hottest of summer afternoons. You can hear a stomach rumbling a mile away through a crowd. With you on the team, lunch will never be skipped.


Find out who you are! Volunteer with MS-UK today!

MS Confessional

Posted on: June 19 2018

Confessional.jpg

Forgive me.

Sometimes I fail to do the right things for multiple sclerosis.

Now is the time to enter the booth and admit my wrongs.

Forgive me doctor for I have stumbled (Sorry, no pun intended).

I have been in conversation with a familiar person while being unable to recall their name.

There are times when I don't stretch as I should.

Sometimes I wear the same clothes two days in a row. (Figuring I haven't done anything to get them dirty.)

I get angry at MS. I yell, scream, cuss at it. I use language that would make an inmate blush.

Sometimes I don't eat as I should. Too much junk. Candy, cookies, chocolate. It makes me feel "blah" yet it continues to be crammed into my mouth.

I wall-walk when I should use my canes.

At times I feel disconnected to family, friends and those around me. And I don't know why.

 

Shower.jpgSome days I am too tired to shower.  Thinking..."(sniff-sniff) It can wait another day."

I try to do too much--wanting to carry my share. Which usually ends up in a fall or spilling/dropping something to make even more work.

Sometimes I get tired of the seemingly constant uphill struggle with MS.

There are times I just sit quietly with not much to say. Not as lively as I use to be... and once again, I don't know why. (But I have a two-letter guess!)

 

 

Sock Dark Clouds.JPGHaving MS is about remaining positive but there are days I am not. Negative thoughts swirl around my melon. (I am about to swear at MS again!)

Sometimes I go into a store and forget why I am there.

Forgive me doctor as I try not to allow multiple sclerosis to consume my every moment. But it is darn difficult at times to rise above.

What do YOU have to confess?

Take a seat next to me in the booth and spill your guts.

It will make us both feel better!

 

By Doug Ankerman

Doug pokes fun at MS and other topics at myoddsock.com

Keep in touch on Twitter at @myoddsock and Facebook.com/myoddsock

Fundraiser of the month - James Harrison the skydiving superstar!

Posted on: June 17 2018

James SD 1.JPG'My name is James Harrison. I was first diagnosed with multiple sclerosis (MS) in 2014 following on from around two years of unexplained relapses in both physical and neurological difficulties. I put the relapses down to stress as I was working my first professional job and was put under an immense amount of pressure. This work stress lead me to change my job to something much less stressful, although still unaware I had an underlying condition.

'After having a relapse where I experienced the pins and needles, I got in touch with my GP to see what was happening. I had pushed the idea of MS to back of my mind and was sure it must be something else, something much less serious. This then triggered the need for an MRI scan to determine what sort of neurological activity was happening. Not long after the MRI scan I was called for a consultation and given the diagnosis of having relapsing remitting MS.

'After the diagnosis started to sink in I was hit with an immense amount frustration, confusion, uncertainty and depression. Thankfully though, I was engaged to a very loving and caring woman, who did everything possible to keep my spirits up in the weeks that followed my diagnosis. My fiancée came with me to my first appointment with my MS nurse who discussed medication options. I decided to take Rebif Interferon as this was an injection three times a week and seemed the best option. Getting used to being on the medication was a lot to adjust to. Not being afraid of taking injections three times a week was definitely a shock to the system. The aftereffects left me groggy and also left me with an increased appetite causing me to gain weight.

After only 6 months of being on the medication, I was moved on to Copaxone due to increased liver functions. This was an injection every day and took some getting used to and the injection sights were becoming more noticeable. About a year of being on the medication I found myself feeling I had control over my condition and moved myself back into a job role that would challenge me and offer future prospects.

From there it was life as normal leading up to my 30th birthday were I was able to cross off the head line of my bucket list, a skydive, which my wife surprised me with on the morning of my birthday! 

It was the most exhilarating experience of my life and I came down a changed man as I felt 'if I can do that, I can do anything'! It was even more amazing to learn afterwards, my wife and family had secretly been raising money for MS UK. In the end we managed to raise £505.00. I have always wanted to raise money for MS but never got round to doing it, so having my birthday surprise double up as a sponsorship was a great idea. I learnt afterwards that my wife had not only been raising money but also awareness of MS, especially amongst her work colleagues.

Next for me and my wife is the news that we will be parents in December. This is something I have been waiting for my whole life and couldn’t be happier.

This will be another huge change for us both and will undoubtedly lead to some very tired times as well as many happy times. However, the place I am at with my MS, I know I will be able to manage any future changes and remain positive, and similarly with my condition whatever the outcome maybe.

 

 

'I once saw someone dressed as a toilet...' Lauren talks about her volunteering experience!

Posted on: June 04 2018

lauren_sm.jpgIn the spirit of Volunteers' Week 2018, we're thanking every single one of our amazing volunteers! Without them we simply wouldn't be able to offer the level of support that we give to those living with multiple sclerosis. We sat down with Lauren Duckling to tell us about her volunteering experience...

What events have you volunteered at for MS-UK?

I've volunteered for the London Marathon, the Royal Parks Half Marathon, and the Colchester Half Marathon.

What is the best thing about volunteering?

I think the best thing about volunteering is meeting people who have raised money for MS-UK. Being at the finish and seeing their faces as they achieve what they set out to achieve will always be one of the best moments for me!

Why do you think other people should volunteer?

I think people should volunteer because it's a great day out, no matter what you are doing. I enjoy every minute of it.  

What is the best event you’ve ever volunteered at and why?

I think the best event has to be London Marathon hands down! I absolutely love London, and being there on the day, watching from the sidelines soaking in the amazing atmosphere, beats watching it on TV. I have volunteered for London Marathon twice now and I have had the pleasure of meeting so many wonderful people. It can get emotional at times but in a good way. I think it is just because it is a huge event and running that is such an achievement. I see some of the runners spot their family in the crowd and that always makes me smile.

Have you got any funny volunteering stories?

I once saw someone dressed as a toilet and that made me laugh!

Why not volunteer at an event for MS-UK? Whether you want to work in the office, behind the scenes, or help out at a national event like the Royal Parks Half Marathon, then email Jenny to find out more.

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