When I was eight years old I remember joining thousands of other people lining the streets of London, waving and cheering as streams of people ran past. At the time I didn't really understand the enormity of what those people were doing, running mile after mile, some fast, some slow, some walking but all in the aim of completing 26.2 miles. Amongst those people was my Dad.
Fast forward a few years and my Dad had to take every ounce of energy he had and a hell of a lot of drugs to pull himself out of his wheelchair and slowly holding tight on to me, walk a few steps down the aisle of a church on my wedding day. He had been diagnosed with multiple sclerosis (MS) the year before and had his world turned upside down. From being fit and healthy, in the Police to being forced to take early retirement and a complete change of life.
For years after I watched my Dad, I would watch the marathon on TV every year saying to myself 'one day', and since taking up running the itch has needed scratching so I decided the year I turned 40 to make my bucket list dream happen to take part in the most amazing marathon in the world.
As soon as I heard I'd been accepted to run for MS-UK I set the wheels in motion for my fundraising, looking at where I could start generating easy money with little effort whilst I planned a big fundraiser. Sponsorship started coming in as soon as I announced my challenge and as a Slimming World Consultant I have had amazing support from my members for my fundraising. I have a change pot in group and my members along with other groups in Chelmsford, Essex agreed for the next few months to have these for MS-UK. Everyone's odd 5ps, 10ps are really adding up to over £50 a month donated this way. Again members supported through donating their slimmed out of clothes which were swapped for cash and a Christmas raffle in my groups raised £284.
Michelle who runs Chelmer RoadRunners, a local running group which is where I first learned to run completing a couch to 5km course, sings in a local band and I approached her to sing at a charity night I was planning. Seen as she got me into the mess in the first place it seemed fitting to have her at the event! A local pub was the venue (free hire to maximise funds raised!) and with the fabulous entertainment, a raffle to be held. After hundreds of letters, emails and approaching local companies I managed to secure some great donated prizes and started selling raffle tickets to people who couldn't make the night, again to ensure I raised as much as possible. Promotion of the event went out on social media, posters up locally and great support from local papers - three have now printed my story to help further support!
The charity night went well, everyone had a fantastic time and most importantly a brilliant £1,186.06 was raised to bring my total fundraising over my initial aim of £2,500 - but I'm not stopping there - a sweepstake planned, further change pots and sponsorship will hopefully bring the total to £3,000, or more! Every penny will help MS-UK give amazing support to people like my Dad.
So now, the countdown is on till the big day itself where I shall be so proud to be running the same streets that my Dad did in 1986 (but not accepting his challenge of beating his time of 3 hours 35 minutes!)
I am pleased to say New Pathways issue 108 is now landing on doormats across the country! As always we have a packed issue, full of all the latest multiple sclerosis (MS) news and research, including drug updates and the latest cannabis study findings.
As the sunshine begins to make an appearance, we get topical with lots on vitamin D. MSer Ian Cook puts vitamin D tablets and sprays to the test (see page 30) and Kahn Johnson reveals what happened when his vitamin D levels became toxic on page 16.
Also in this issue, MS Nurse Miranda Olding discusses sexual dsyfunction and what can be done to help (page 14) and we have the big interview with the star of Channel 4 programme 'The Search for a Miracle Cure' Mark Lewis (page 24).
I hope you enjoy reading this issue, and please do email me your comments and letters to firstname.lastname@example.org.
Editor, New Pathways
P.S. Don't forget New Pathways is available to read on the go. Download the My MS-UK app from the App store on your phone or tablet device today!
Back in October last year I decided to apply for the running of the Virgin Money London Marathon in aid of raising money for MS-UK. It was less than a week later that I was delighted to receive the phone call that my application had been accepted.
My Mum, who has had the condition for a number of years is the reason why I am running for MS-UK.
Everybody who knows my Mum will agree, she is a completely selfless individual, always putting other people ahead of herself and has an admirable ‘just get on with it’ attitude towards her condition. By running the London Marathon for MS-UK, hopefully I am giving something back, however small it may be.
At the point of my Mum’s diagnosis, I wasn’t aware of the symptoms of multiple sclerosis nor had I heard of the condition at all, which, along with raising as much money as possible for MS-UK, is one of the main reasons I am sharing the fundraising as far and wide as possible – to raise awareness and understanding of the condition, which I know is an objective I share with the fantastic work that MS-UK undertake.
Having already raised in excess of £2,000 with over 7 weeks to go until the big day (at the time of writing this), the fundraising so far has been fantastic and has far exceeded the expectations I had. People’s kindness and generosity so far has been a huge source of motivation for those dark, freezing cold training runs which I have no doubt all the other runners for MS-UK are also enduring at the moment.
Due to the recent weather conditions and a couple of injuries, I can’t say training has been straight forward but nonetheless, remains on-track and now approaches its latter stages with a few more long runs to go, before gradually tapering the distance down as race day approaches.
A massive thank you to everyone who has donated so far, it’s hugely appreciated by my Mum, MS-UK, my family and myself. I am hoping to keep the momentum going by reaching £2,500+ by race day so please read my story and donate if you possibly can by visiting my fundraising page.
Good luck to all the other MS-UK runners with the remainder of your training and fundraising.
Thanks for taking the time to read.
MS-UK’s Wellness Centre, Josephs Court works closely with the University of Essex to support occupational therapy students (OTS) by providing role-emerging placements while they train.
Each year the Josephs Court team is invited to speak at a symposium with the new OT recruits about role-emerging placements at its Wellness Centre in Colchester, Essex and increase their knowledge of multiple sclerosis (MS).
Diana Crowe, Head of Services, said: ‘We took the opportunity to promote all of our services, but focused on what we deliver at Josephs Court, such as the exercise equipment and the benefits this brings to clients.’
‘There was good interaction and we were asked about the social activities we provide, so we discussed the MS-UK Social Group in Colchester, which has regular coffee mornings and other events such as bingo!’
‘Due to recent headline news regarding HSTC there was an interest in how this treatment could impact on us as a charity and our clients. Just like everyone else we will have to wait and see how the treatment develops, but we will continue to support people with MS for as long as they need us.’
‘We split into groups, which gave us a chance to speak in more detail with some of the students,’ explains Dean Jeffreys, Centre Manager. ‘The students were interested to know about APS Therapy, how we link up with other services and how politics impacts on our strategy.’
Speakers from St Helena’s Hospice spoke about its gardening project for those at the end of life and Craig, from Pots the Soldier, spoke about his post-traumatic stress diagnosis after leaving the army and how he found a love of pottery thanks to the support of OTs – very inspirational!
‘It was great to see the students so interested in the work MS-UK does and we hope to continue to work with Essex University over the coming years. Who knows one day we may have our own MS-UK Occupational Therapist,’ adds Diana.
As 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
Hello, 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
Over the next couple of weeks, people across the country will hear from Prudential RideLondon-Surrey 100 about whether or not they got a ballot place. I can just imagine the thousands of lucky people who will get a 'yes' and start planning their big day out in the capital.
But as over 80,000 people applied for a ballot place, there will also be some disappointment…but do not worry! You can still be part of the action as a member of the MS-UK team!
The Prudential RideLondon-Surrey 100 starts in Queen Elizabeth Olympic Park then follows closed roads through the city and Surrey before finishing on The Mall. On Sunday 29 July we’ll be heading to London to cheer on #TeamPurple, and that could include you!
Not only will you take on 100 miles, but you’ll be helping us support even more people affected by multiple sclerosis (MS). When someone calls the MS-UK Helpline to ask a question about managing bladder and bowel problems, your efforts mean we can pick up the phone. When someone reads an article about a complementary therapy in New Pathways that could help with fatigue, you could be the reason the magazine lands on their doormat.
Now, it must be time for the song…
Jenny Poulter, Events Fundraiser
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'