On 30 May, under the banner #BringingUsCloser, the global World MS Day campaign is putting multiple sclerosis (MS) research underneath the spotlight. The aim is to unite those involved in research - whether it be scientists or doctors, students or volunteers - and get them talking.
Throughout the month we'll be celebrating by talking about complementary therapies, and what better way to get to the heart of the subject than to speak to those who've sampled these therapies first hand? Whether you've experienced a positive change due to APS therapy or you have a story to share about using mindfulness to manage MS, we want to hear from you!
For one day only, our very own Sarah-Jane will be taking a break from editing our New Pathways magazine to take over our social media. If you have any questions about complementary therapies, MS research, or even the magazine itself, then make sure to put a note in your diary.
Introductions can be awkward. There are no rules to meeting someone new. Do you shake hands? Do you go in for a hug? What if you go in for a hug and they open up for a handshake and you end up doing some kind of weird, welcome dance that is neither one nor the other? Then you have to smile and laugh and pretend that the last few seconds never happened, making sure to maintain as little meaningful eye contact as possible. My palms are clammy just thinking about it.
That’s why digital introductions are so great. You can grab a keyboard and mouse and dive straight in.
My name is Callum Winterford and I’m the new Marketing Officer at MS-UK. I’ll be the charity’s new face on Facebook and twit on Twitter, spending time sharing news stories and blog posts, responding to your questions, and engaging with our amazing community. I will also be taking over the reins of the MS-UK blog, so if you fancy writing a few words for us you can drop me an email at firstname.lastname@example.org.
I’m really looking forward to being a part of the MS-UK family and getting to know our supporters. Here’s hoping that 2018 is the purplest year yet!
Around 1 in 600 people live with multiple sclerosis (MS). The symptoms vary greatly from person to person and can be unpredictable. Remap is a charity that helps people with MS and other disabilities remain more independent or do things that bring them joy and improve their lives.
Essex Central Group of Remap have helped many people such as Keith from Boreham. Keith was first diagnosed with MS aged 24 and then an enthusiastic PE teacher. Now 18 years later and having lost much of his leg strength, Keith uses a Motability converted car, scooter and crutches and stays remarkably independent working 5 days a week in teaching and enjoying family and social life. But MS was causing day-to-day compromises to his quality of life.
Keith first heard of Remap a year ago, and since then he and Remap volunteer Martin have worked together to identify and resolve some of these compromises.
Crutches when not in use seem unable to stay put, often ending up on the floor - very frustrating to their user. Martin used tiny yet powerful neodymium magnets mounted in Keith’s home and school office and fitted a steel disc to each crutch. Keith simply places his crutches so the magnets attracts the discs and they are held firmly. When he needs them again, a quick tug on each crutch releases the magnetic force and they are ready to go.
Similarly, Keith needs to take his crutches when using his scooter, especially round school. Not easy to balance on his lap and carry a bag. Martin used special roller clips mounted on scooter seat and furniture feet protectors acting as supports for the crutch feet. So now Keith carries his crutches ‘hands free’.
At Keith’s house the steep drop outside the patio doors made going outside very difficult to negotiate. Having worked out that 9 cm was the greatest step height Keith can comfortably manage, Martin built a set of 3 steps each 9 cm that allows Keith to access his garden.
Keith says “Remap adaptations undoubtedly make my day-to-day life much easier with a positive effect on my mindset. Small tweaks do make a big difference!”
Remap will put their minds and expertise to anything, however large or small, and welcome direct requests from those needing help or from parents, carers and health professionals. If you live in central Essex, you can contact Remap by calling Peter Livingstone on 01621 855354 or emailing email@example.com. Remap will visit you to work through the best solution, all work is free although donations are always welcome, and their website is www.remap.info.
Don't live in Essex? Remap are national, so you can still get in touch about what's available near you. Visit the national Remap website at www.remap.org.uk or call 01732 760209.