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Running the Edinburgh Marathon relay with the people I love

24 Mar 2017 | hmaunder
Edinburgh Marathon Festival MS Society runners Last year I completed the Edinburgh Marathon relay with three of the most important people in my life: my now-wife, Claire; my dad; and one of my best friends, Lynsey.  I was diagnosed with MS in June 2011, nine months after going blind in my left eye while on holiday in Spain with Claire. Right from the time of my diagnosis I’ve refused to let people speak to me in a sympathetic...

Lewis MacDougall: “Mum’s MS helped me empathise with my character in A Monster Calls”

24 Mar 2017 | Frances Whinder
Lewis MacDougall, 14, won praise for his portrayal of a young boy losing his mum to cancer in film A Monster Calls. He tells us about life with his mum, who had MS and died when he was just 11.  Mum was very active when she was young. She was in musicals, she danced, she played piano. She was a really fun person to be around. My dad isn’t arty, so I guess I must have got my love of acting from my mum. Dad says I got all mum’s good...

Top tips for managing fatigue from an MS mummy

24 Mar 2017 | Hannah Paull
Joanne Chapman has MS and a toddler. She tells what having a little one has taught her about managing her MS fatigue. As a mum living with relapsing MS, I struggle with fatigue. For me, it feels like I'm swimming in thick chocolate (I can dream!) and usually I can't carry on. How do you look after a little person when it's hard enough to look after yourself? These are the things I’ve found helpful. 1....

Talking MS and social care in Parliament

22 Mar 2017 | Babs Guthrie
Earlier this week, we hosted a panel event in Parliament to highlight how important social care is to so many people with MS. It came after the Government announced £2 billion investment for the social care system in England. We welcomed the news but recognised this is not a long-term solution – something we made clear to politicians at the panel. What you told us The event...

“Poetry helps me express myself”

21 Mar 2017 | hmaunder
Julie with a sign saying kindness Mum-of-four Julie Clear writes poems about life, love and MS. She tells us why creativity is an important part of her life. How did you get into writing poetry? I’ve always been a fan of poetry and after my MS diagnosis I decided to give it a go. It helps me to clarify my thoughts and express myself. It’s important to me to give something back and writing is a way of doing that -...

Sex and MS: losing and finding the big O

17 Mar 2017 | Amy Mackelden
When you have MS, your bed becomes your best friend. MS can mean beds risk being drab, depressing places cluttered with cake crumbs (just me?), but they’re also conducive to sex – aren’t they? Sex can be complicated when you’re sick. Hell, sex can be complicated regardless, but a chronic condition is a game changer like no other. My body and MS I found out I had MS two weeks after my thirtieth birthday. A major relapse that...

The research triple whammy that will stop MS

17 Mar 2017 | David Schley
We now know enough about what goes wrong in MS to know what needs to be done to fix it.  Scientists are working on three ways to tackle MS: stopping the immune damage, promoting myelin repair and protecting nerves from damage. We're not there yet, but we believe that if we achieve these goals then we can stop MS. What goes wrong in MS? In MS, immune cells attack the protective myelin coating around our nerve cells. Myelin plays a vital role in how...

5 things you need to know about today's PIP changes

16 Mar 2017 | Babs Guthrie
Personal Independence Payment (PIP) is a benefit that helps cover the extra costs you can face if you need help doing everyday tasks or find it difficult to get around. It’s replacing Disability Living Allowance (DLA) for people of working age across the UK.  Last month the Government unexpectedly announced amendments to the PIP assessment criteria.  >> Find out what we did to campaign against the changes These...

Join a User Experience Panel and help shape benefits system

15 Mar 2017 | hmaunder
Scottish Parliament People in Scotland who have experience of using benefits are being invited to help shape Scotland’s new system. What are User Experience Panels? The Scottish Government will become responsible for some aspects of social security currently delivered by the UK Government, including DLA/PIP and Carers Allowance. To help design the new system, they want to bring together at...

We won't give up opposing PIP changes

14 Mar 2017 | Babs Guthrie
Westminster chairs Two weeks ago the Government announced unexpected changes to the Personal Independence Payment (PIP) due to come into effect later this week. We're campaigning to stop them. The changes involve tightening up aspects of the assessment criteria and this could potentially have an impact on people with MS. The Government’s plans ignore the complex...

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