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Guest blog: Why mobility is more important than just improving accessibility

Posted on: September 05 2018

Howard Smith, Head of Operations at Your Mobility discusses improving accessibility...

With the recent announcement that the government and a number of major high street brands are backing the UK’s first ever inclusive shopping day aimed at supporting the disabled and immobile, accessibility in our cities and towns will be vastly improved for those with multiple sclerosis (MS).

Called ‘Purple Tuesday’, the innovative scheme will take place on 13 November and will see retailers including Argos, Asda, Sainsbury's and Marks & Spencer introduce new measures to make shopping a more comfortable experience, especially for those in mobility chairs.

But whilst this is much-needed progression, many people are unaware of the experiences that approximately 10,000 MSers deal with before they can even enjoy the luxuries of shopping and eating out – things we often take for granted.

For instance, someone who has the condition may have to rely on a wheelchair or mobility chair as a means of getting around. Unfortunately, this can involve a lot of hoisting, such as from a bed to a chair, which can put a considerable amount of pressure and strain on loved ones.

Once in the chairs, accessibility can still be an issue. If the chair can’t be modified, for example, simple tasks such as going out into the garden, or even entering the lounge or living room from the bedroom to spend time with family and friends can become an unnecessary challenge.

If an immobile person is deprived of accessibility for a prolonged period of time, isolation and loneliness can become a daily issue. In the worst-case scenario, a lack of accessibility can have a detrimental effect on the person’s mental health, with illnesses such as depression arising from feeling as if they have no freedom or independence.

So, it is important to remember that mobility is about more than just making places accessible. Yes, chairs the immobile use must be inclusive to utilise accessibility, but ultimately, they need to ensure the user is kept comfortable and safe.

A bespoke mobility chair, for instance, can be adapted to cater to an individual’s specific needs. Adjusting a specialist lounge chair to suit the user’s environment or varying physical needs, will make spending quality time with family and friends a more comfortable and accessible experience.

As well as being portable, multi-adjustable, with tilt in space capabilities and light in weight, bespoke chairs can provide those with MS with a greater sense of independence and freedom, while offering the highest level of security, safety and stability.

Overall, as a nation striving for more inclusivity, we must make mobility more comfortable for those with MS. Yes, retailers recognising the need to better improve accessibility for mobility chair users is fundamental in reaching our ultimate goal of creating a fully inclusive society, but we must also endeavour to make the user’s quality of life as comfortable as possible both in and outside of the home.

Let’s continue to talk about accessible shopping to raise awareness. Why not share your good and bad shopping experiences, or what mobility aids make shopping possible for you. Visit out Facebook page to add your comments

Top 5 books about multiple sclerosis

Posted on: August 09 2018

Hello,

As today is Book Lovers Day, I couldn't resist asking staff at MS-UK what their favourite books are about multiple sclerosis (MS).

So, here's the top 5...

  1. The Multiple Sclerosis Diet Book: A low-fat diet treatment of MS by Roy Laver Swank MD, PHD and Barbara Brewer Dugan
  2. Managing Multiple Sclerosis Naturally: A self-help guide to living with MS by Judy Graham
  3. Overcoming Multiple Sclerosis: The evidence-based 7 step recovery program by George Jelinek
  4. The Wahls Protocol: A Radical New Way to Treat All Chronic Autoimmune Conditions Using Paleo Principles by Terry Wahls
  5. Awkward Bitch: My life with MS by Marlo Donato Parmelee

Check out Amazon for the books if you want to!

Happy Book Lovers Day everyone,

Laura

Marketing Manager, MS-UK

 

 

 

New Pathways issue 110 - The Editor's Letter

Posted on: August 01 2018

Hello!Issue 110 Front Cover of New Pathways

This issue of New Pathways magazine is jam packed full of a variety of news, features and real life stories. Start your read by catching up on all the latest developments in MS on pages 4-10. Then why not discover nine anti-inflammatory foods that could benefit your diet and MS on page 34.

Next we take a look at how a condition that predominantly affects women, actually impacts men on page 12. And on pages 30 and 32 MSer and feature writer Ian Cook revisits Access to Work and gives electric wheelchairs a spin.

Stem cells research and personal stories are still dominating the news, so we thought we would produce an update on this ever popular treatment option on page 24.

Also in this issue, MSer and HR Specialist Rebecca Armstrong explains how to get the best out of occupational health on page 16, we take a look at the therapeutic benefits of horse therapy on page 18, and Rosalind Barton reveals the highlights of her surprisingly accessible trip to Singapore.

Subscribe today to read all this and much more!

Sarah-Jane

Editor, New Pathways

Local man smashes London Marathon target after revealing MS diagnosis

Posted on: June 15 2018

A Colchester man who recently revealed his diagnosis of multiple sclerosis (MS) has made history by raising the £2,000 needed to run the 2019 Virgin Money London Marathon for MS-UK in just four days, smashing the charity’s record.

Since opening up on his blog about his MS and his struggles with mental health, Tom Cutts, 26, has attracted 107 supporters to his JustGiving page and raised a stunning £2,330*, cementing his place in next year’s prestigious race in less than 96 hours.

The former Wivenhoe Town footballer was diagnosed with MS in October 2017 after feeling pain in his chest, head and stomach. Since then he has admitted to falling into depression as he struggled to come to terms with a future living with the incurable neurological condition.

Mr Cutts said: “At first I thought it [the pains] could be to do with the usual stress of work but even with medication these pains never subsided.

“Getting that diagnosis sent thoughts spiraling throughout my mind. The first once was ‘what is multiple sclerosis?’ I’d only ever heard the word one or twice in my life but never knew what it meant.

“My diagnosis has caused me to fall into depression, my anxiety levels have skyrocketed and at times so have my stress levels. Coming out of depression takes time, there’s no one-click solution.”

When asked about how he felt about raising the money in record time, he continued: “The response I have received on my sponsorship page has left me speechless.

“To hit my target in less than 96 hours and to raise over £2000 that quickly doesn’t feel real. Recording MS-UK’s quickest time to hit this mark has made me feel privileged to have so many great people in my life who have allowed me to achieve this. It has been one of the most amazing experiences I’ve ever had.

“Since announcing my diagnosis to the public on Friday evening I’ve received so many messages of support from friends and people around the world that it has been hard to manage all these conversations at once.

“As well as raising money for MS-UK, my aim is to raise awareness of both MS and mental health, which are both very personal to me.

“Sharing my experiences of MS and opening up about my depression was important to me as even though I am going through a hard time in my life and struggling inside, if I am able to help just one person then my blog is a success.

“I hope to help people realise that they are not alone with these battles in life. People keep telling me that I am inspirational but to me I’m just being myself!”

You can visit Tom’s JustGiving page www.justgiving.com/fundraising/tomcuttsmsuk or read his blog www.mscontroltomajortom.com

 

*Figures as of 13 June 2018

Guest blog: Dealing with the Downtimes

Posted on: June 19 2017

In her new guest blog Chloe Metson talks of dealing with depression...

chloemetson2.jpgPeople often ask how I cope with having MS, and truth be told, it’s rarely the MS that is the problem. Of course, living with relapsing remitting MS can be extremely tough, what with it’s up and downs, but no, the thing I find hardest about living with MS is the depression.

MS and depression go hand in hand for a lot of patients. Whether it is caused from living with a highly stressful situation, or actually physically caused by the MS itself, for me it’s undoubtedly the most difficult thing to cope with. It consumes me, and I become a shadow of my former self. Usually happy-go-lucky, this change is particularly hard for family and friends.

If you’re lucky enough to have never experienced depression, let me try and explain what it feels like.

Depression is darkness and fear that is targeting you as a person, and as far as you’re concerned, no-one else. It becomes sort of a cloak that others can’t penetrate and you feel it protects you from others. It completely numbs you in such a way that the only emotions you are capable to feeling are the horrible ones, and the only thing that alleviates it is sleep when you can get a break from the aggression going on in your head.

I’ve been at that point where all hope is lost, because it takes over and consumes you, and it’s the hardest thing I have ever dealt with. It felt so tempting to take the option to give up on things completely, because it was so utterly exhausting having to battle it. But I fought on and came through the other side.

I’ve been living with MS and depression for 16 years now. I believe I’m over the worst of it as I have no trouble in focusing on the future and the positives of my life, thank goodness. MS throws up it’s challenges, but at least I feel like I can cope with them now. But how did I reach this point? Firstly I learnt to be kind to myself. I took the time to rest if I could, and did nice things for myself, even if they were only small. I stopped beating myself up over negative thoughts. Depression is an illness and it deserves the respect of one. If you had a broken leg you wouldn’t be reckless and run around on it, so I learnt to respect my mind and give it the space it deserves. I tried to focus on the positives and the little sparks of happiness in life. Most importantly I’ve been trying to talk about it, and accept help whenever I can, however hard that may be.

There is such a stigma in our society towards mental illness. Perhaps if we were less unsympathetic and ignorant towards it, it would give a sufferer more breathing space and the encouragement to find the strength to battle it and allow their true selves to ignite again. Depression can be fought, and you can win the war. I’m living proof that however bad things may seem, if you are patient, there can always be light at the end of the tunnel.

Chloe.

If you need to talk to someone please contact our Helpline either on 0800 783 0518, or via our Live Web Chat service.

Heads Together - speaking openly about mental health

Posted on: April 02 2017

jenny.jpgLast week the Virgin Money London Marathon charity of the year, Heads Together, released a series of ten films exploring the benefits of speaking openly about mental health. It’s spearheaded by some rather familiar faces, The Duke and Duchess of Cambridge and Prince Harry. The charities aim is to end stigma around mental health and change the conversation on mental health once and for all.

You can watch the films, and find out loads more about the campaign, by following the charity on Twitter @heads_together and using the hashtag #oktosay.

Check out Freddie and Stephen in this short film

We wish everyone taking part in the Virgin Money London Marathon lots of luck, no matter which charity they are running for!

Love Jenny

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