Skip to main content

Remap awards the achievements of its dedicated volunteers

Posted on: July 31 2018

Recently Remap, a national charity that works through local groups of skilled volunteers to help disabled people achieve independence and a better quality of life, held an awards ceremony to award its volunteers for the great work they have done. 

The ceremony was held in London, with awards presented by Dave Henson, engineer and Paralympian, who said, “I am blown away by the ingenuity of Remap’s engineers. They are coming up with some really unique, creative solutions which have a massive impact on people’s lives.”

The talented makers, inventors and engineers submitted a strong field of applications for the awards, which this year included the Able Magazine Award.

The winners were:

Image of helping handle being used

Helping handle...

This gadget was devised for Bob Crump, a paraplegic who enjoys off-road driving. He has a hand-controlled Range Rover but was experiencing great difficulty in moving from his wheelchair to the car unassisted, due to declining upper body strength.

Remap volunteer David Tappin solved the challenge by making a simple lightweight frame which clips onto the vehicle’s door hinges to provide a stable handle. This enables Bob to use both hands and arms to lift himself from his wheelchair to the driving seat.

Thanking Remap, Bob said: “The handle David Tappin made allowed me to not only continue my off-road driving but also enabled me to get out much more for general day to day activities, which I had started to avoid, therefore improving my quality of life. I can’t put into words how grateful I am to Remap and especially Mr Tappin who generously gave so much of his time and expertise”.

The awards represent some ingenious solutions to problems faced by individual disabled people from across the country. Like all of Remaps equipment, each of these devices were given away free to its new owner, for whom it was specially designed. Remap’s team of hard-working volunteers help about 10 people every day, allowing people in their communities to stay independent, regain lost skills and discover new ones.

Watch the Helping Handle video on Remap's YouTube channel

MS-UK cyclists raise over £20k at Prudential RideLondon in the rain...

Posted on: July 30 2018

Hello,Photo of #TeamPurple at RideLondon 2018

Yesterday we had a huge team of 55 taking on the iconic Prudential RideLondon for MS-UK. The weather conditions were not the best and our cyclists were certainly challenged by the elements! They had to deal with constant rain, which affected visibility and high winds which turned the rain horizontal. The rain brought up muck on the roads, and one of our team members endured 6 punctures along the course! But they all completed the event with determination and a smile on their faces. During this 100 mile cycle event, cyclists whizzed past the iconic sights of London and took on the world-famous zig-zags of Box Hill.

I would like to say a huge thank you to #TeamPurple for taking on this ultimate cycle challenge, and for working so hard training and fundraising – especially in the hot conditions the UK has been experiencing recently. So far as a team you have raised a whopping £21,656! MS-UK are so thankful for this amazing effort...it means we can support even more people affected by multiple sclerosis (MS) and make sure we’re here to listen and offer information when we’re needed.  

As always, we can never do these events without our trusty volunteers! From cheering to handing out snacks, you were amazing at supporting our cyclists on the day, and you never seem to run out of that #TeamPurple energy and spirit - even in the pouring rain! If you fancy being part of the cheer squad, we would love your help supporting #TeamPurple at our events – just visit our website for more info. 

Check out our Facebook photo album of our fantastic cyclists!

If this has inspired you to cycle the Prudential RideLondon for MS-UK, please do get in touch with me as recruitment for the 2019 team will be open shortly! Just email me or give me a call on 01206 226500.

Thank you again to everyone involved – you make our work possible!

Best wishes,

Jenny

Events Fundraiser

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.

Professor’s hypothesis for MS cure gives people false hope

Posted on: July 25 2018

sarah-jane-300.jpgNow that I’ve got your attention I should apologise to Professor John Paul Leach, consultant neurologist at the University of Glasgow because the headline of this story isn’t entirely true. Unfortunately, all he is guilty of is doing his job and have a hypothesis for something we all want for multiple sclerosis (MS) – a cure.

Professor Leach has hypothesised that MS is caused by three-hits, strictly in order, in genetically susceptible persons. His three-tiered hypothesis is as follows:

  1. A clinic-epidemiological model of MS as a rare late complication of two sequential infections (with the temporal sequence of infections being important)

  2. A proposal that the first event is helminthic infection with Enterobius Vermicularis (threadworm), and the second is Epstein Barr Virus infection

  3. A proposal for a testable biological mechanism, involving T-Cell exhaustion for Epstein Barr virus protein LMP2A.

The professor and his team believe that this model satisfies some of the as-yet unexplained features of MS epidemiology, is consistent with the clinical and neuropathological features of the disease and is potentially testable by experiment.

Put simply it is thought that MS develops when a susceptible person contracts two separate common infections, threadworm and the Epstein Barr Virus, which cause the body to attack itself. Doctor’s now believe that if this in fact is the case, a vaccine for one of the conditions, such as the Epstein Barr Virus could be created to prevent future people developing the condition. 

Some of the main news outlets have sensationalised this story. Yes this is an exciting hypothesis, but if we will have to sit back and let the experts conducted experiments and clinical trials before we find out if this is truly an option for the future.

Professor Leach’s hypothesis was published in the journal Multiple Sclerosis & Related Disorders.

Blog by Sarah-Jane, Editor of New Pathways Magazine
 

Subscribe to New Pathways

 

Research shout out: Valuing Goals Study

Posted on: July 23 2018

Photo of Emma, lead of Valuing Goals studyEmma Britneff, a Trainee Clinical Psychologist from Royal Holloway, University of London is conducting a study to evaluate whether an online resource called ‘Valuing Goals’, which offers skills training in goal setting and action planning, can improve well-being for people with multiple sclerosis (MS). The study has been granted ethical approval by Royal Holloway Research Ethics Committee (REC Project ID: 717).

'Valuing Goals' is an online training programme that helps people to identify and work towards positive personal goals by teaching specific skills step by step. It has been designed by clinical psychologists and based on research that shows goal setting, planning skills and working towards valued goals are associated with high levels of wellbeing. Previous studies have found this programme to increase wellbeing and quality of life in the general population as well as in groups of people experiencing lowered wellbeing. Emma is now conducting a study to evaluate if the Valuing Goals programme can be as beneficial for people living with MS, and she is looking for volunteers to take part in the programme. 

How to find out more

If you would like the opportunity to have some online training in how to work towards personal goals, and to take part in some research please go to the link below for further information by clicking it or pasting it into your internet browser before 31 August 2018.

http://valuegoals.azurewebsites.net/participant-information/

Please note this is an external study.

The science of fundraising

Posted on: July 20 2018

Raising money for MS-UK shares a lot of the same fundamentals as classical chemistry. Mixing up elements can lead to surprising results, slightly twealking a formula can make a huge difference, and sometimes things happen that nobody can quite explain…

With that in mind, our science boffins (a few of us in the MS-UK office) decided to study the ecosystem of a typical fundraiser to see what they could learn. Here are their results…

 

Panic levels on event day

Graph 1.png

Fundraiser personality study

Graph 2.png

The anatomy of an event

Graph 3.png

New film from Shift.MS exposes the hidden symptoms of MS

Posted on: July 18 2018

New Pathways editor, Sarah-Jane Lampe, reviews Shift.MS's latest film 'Hidden'

On the 15 July I had the pleasure of attending the preview of Shift.MS’s latest multiple sclerosis (MS) film, Hidden. I knew from the title that it was going to focus on the hidden symptoms of MS and I wondered with intrigue how that might be portrayed. I will admit that I watched the trailer for the film before attending the premiere and was a little shocked by how scary it appeared to be, but I went with an open mind and was not disappointed.

The film itself tells the story of a young woman called Keisha, played by actress Saskia Horton, who is unknowingly experiencing the hidden symptoms of MS. Told by her doctor that her symptoms are nothing to worry about, she goes about her daily life and we, the audience, see the different symptoms she is experiencing. The symptoms are illustrated very cleverly with the use of effects, doppelgangers and the popularised street dance called krumping. This form of dancing is characterised by free, expressive, exaggerated, and highly energetic movement, perfectly suited to what was set to be a battle with MS.

The character lashes out at her doppelganger expressing frustration and anger through the selected method of dance. We see her struggle with fatigue and coordination issues, such as opening a door or pushing a button in a lift, tasks that what would seem simple to the outside world.

It is only when the young son of another character already diagnosed with MS called Kirstie, played by Amber Doyle, notices Keisha struggling and asks his mum to speak with her. It is only then that Keisha begins to understand what is happening to her and is able to tame her doppelganger. 

The film was funded by pharmaceutical company Roche and it was obvious from the outset that the production team had spent a lot of time, money and effort on it. The production has an artistic feel and is very slick.

The film’s director, Dan Henshaw had come up with the concept for the film, which originally had a much more gothic feel than the finished product. I was actually pleased about this when I heard because throughout history disability has been portrayed quite negatively with that stereotypical gothic look and feel. I think Shift.MS has Cathy John, a script consultant, who was involved in the process and happens to have MS, to thank for the softening of the original idea. It came across well in the final edit.

Once I’d seen the film, the trailer no longer seemed scary and I felt like I understood the reasons behind its shock and awe approach. The story of Keisha and her undiagnosed symptoms is, unfortunately, a common one and many people will relate to her. My only criticism is that I wanted to see more of Keisha living well with MS and I wasn’t very sure how she managed to tame her MS doppelganger. Making sense of what is happening and understanding your symptoms is one of the first steps, but did she go back to her GP, did she take a disease modifying drug, did she try a complementary therapy? How did she ‘tame the beast’?

I’d be interested to hear your thoughts, so feel free to email me at newpathways@ms-uk.org 

 

Fundraisers of the Month - Lily and Amelia Smith

Posted on: July 18 2018

Vicki Smith 1.jpgHello we’re Lily (eight-years-old) and Amelia (six-years-old) Smith. We recently completed the Westminster Mile to raise money for MS-UK because our mummy has multiple sclerosis (MS) and we wanted to help those affected by it. Mummy and daddy have previously raised money for MS-UK by completing the Virgin Money London Marathon and we wanted to do the same but we're a bit too young to do a marathon. So when daddy told us about the Vitality Westminster Mile we wanted to do it, both to help raise money and get a big medal at the end!

On the day it was very hot and sunny, and this made running very difficult. We had to drink lots of water to stay hydrated. The course itself was very flat but difficult for our little legs, but we kept going to the end, even sprinting the finish! The best bit about the day was getting the medals at the end. We wore them for the rest of the day, even when we went to Covent Garden with our daddy. We got to race with Mo Farah, and Amelia was luckily enough to get a picture with him! Amelia finished the Vitality Westminster Mile in 11 minutes and 51 seconds, and Lily in 13 minutes and 21 seconds.

We raised approximately £350, exceeding our target of £100, and fingers crossed there will be some more to come. If you would like to donate to us then you can visit our fundraising page.

I hope you enjoyed our post. Keep an eye out for us in the future, we hope to make the Olympics one day!

Lily and Amelia Smith.

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.

Pages

Live Chat Software by Click4Assistance UK