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The 5 stories from ECTRIMS you need to know about

Posted on: October 16 2018

Last week we saw the annual ECTRIMS meeting in Berlin where the world’s multiple sclerosis (MS) experts, consultants, researchers and neurologists came together to share their knowledge and keep up to date with the latest developments in MS.

To help you trawl through the 1,500 plus research extracts that were published for the conference, we've hand-picked the top five stories that you need to know about!

  1. 81.8% Patients on Glatiramer Acetate Depot demonstrated no evidence of disease activity at two years
  2. Can coffee intake increase multiple sclerosis disability?
  3. Characteristics and treatment of trigeminal neuralgia in multiple sclerosis patients
  4. Effects of sex-related factors on probability of disability in women with multiple sclerosis
  5. MS patients are at increased risk of osteopenia and osteoporosis

Don’t forget to share your comments and lookout for more ECTRIMS news in the coming weeks!

Sarah-Jane

Editor of New Pathways Magazine

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Research shout out: Online task to measure cognition

Posted on: October 13 2018

Image of poster for research projectJowinn Chew, a PhD student at King's College London, based at Guy's Hospital, is seeking people affected by multiple sclerosis (MS) to undertake an online task using a newly developed ratings tool. 

In the task, you will be presented with fifty short descriptions of different scenarios. This will be split into ten blocks of five, with a rating task after each block.

Using a 4-point scale, the researchers would like you to rate how similar in meaning each sentence is to the description that you read with that title. The ratings will be used to inform the materials for tasks, and it’s completely anonymous.

You can do the task online using this link: https://kcliop.eu.qualtrics.com/jfe/form/SV_5cAkSnZHlxPZ1nT 

Chew’s research is focusing on identifying the cognitive mechanisms which underpin and maintain anxiety surrounding illness uncertainty within MS. Jowinn Chew is supervised by Dr Colette Hirsch and Prof Rona Moss-Morris.

It is World Mental Health Day

Posted on: October 10 2018

Photo of Diana from MS-UKHello,

It’s World Mental Health Day, an annual day to highlight the importance of looking after your mental wellbeing that is recognised by the World Health Organisation.

To recognise the day, the Prime Minister Theresa May has appointed a minister for suicide prevention. Jackie Doyle-Price will add this to her role as Health Minister to help tackle the stigma surrounding suicide.

Here at MS-UK, we have been told that when it comes to living with multiple sclerosis (MS) the mind is often overlooked. That’s why this time last year we launched MS-UK Counselling, a confidential telephone counselling service for people with a diagnosis of MS.

I wanted to let you know a bit more about it, as it is World Mental Health Day. The only service of its kind, MS-UK Counselling is focused on helping people with MS explore the emotional impact of living with this condition.

It is very common for people to struggle with coming to terms with a diagnosis or dealing with the uncertainty of how their condition may progress. For some, MS-specific counselling is crucial in supporting them to come to terms with their condition, understand their feelings and live positively with MS.

So if you are thinking about your mental health today with all the media attention on World Mental Health Day, do visit our web page to find out more about MS-UK Counselling. Our team of counsellors are here to help and support you,

Best wishes,

Diana

Head of Services

Friends of MS-UK Awards 2018 - The Many Marathon Man!

Posted on: August 09 2018

Meet the winners of this year's Friends of MS-UK Awards!

Every day this week, we'll be revealing each of the well-deserved winners and finding out, in their own words, what it means to be awarded such an accolade...

Chris C.pngChris Chandler

When Chris’ wife Jennie was diagnosed with multiple sclerosis (MS) in 2011, they turned to MS-UK for help. Since then, Chris has run in aid of MS-UK...and run, and run, and…

In 2013 Chris ran the Virgin Money London Marathon and since then he has applied dedication (and endless hours) to reaching an amazing milestone – completing 100 hundred marathons in aid of MS-UK. That’s over 2,500 miles!

This year, Chris officially joined the 100 Marathon Club when he completed his 100th run at Betteshanger Country Park.

He said: 'I am delighted to receive this award, it was a nice surprise. It has been a pleasure to help raise money for MS-UK and watch them grow and develop over the years. I have fundraised for them and see how the money myself and others raise goes to good use.'

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

 

 

 

Friends of MS-UK Awards 2018 - The Guru!

Posted on: August 08 2018

Meet the winners of this year's Friends of MS-UK Awards!

Every day this week, we'll be revealing each of the well-deserved winners and finding out, in their own words, what it means to be awarded such an accolade...

Trishna.pngTrishna Bharadia

You may recognise this name, as Trishna is not only a spokesperson within the MS community, but she also writes for New Pathways magazine.

For several years now Trishna has made a significant contribution to New Pathways magazine, from reviewing the Sym-Trac app way back in 2014 right through to cropping up in the last issue when she won the inaugural Eyeforpharma Patient Advocate Award (Europe) 2018.

A passionate advocate for sharing patient voices, Trishna works tirelessly to raise awareness of MS and inspires our readers.

She said: 'It totally made my day when I found out I was being given this award! I've thoroughly enjoyed everything I've done with MS-UK, particularly writing for New Pathways. I really hope that when people see what I do, it will inspire others to get involved with MS-UK and play an active part in the MS community. For me, this is the most important thing because together we can not only help and support each other better, but we will also have a stronger voice for all those affected by MS!'

Friends of MS-UK Awards 2018 - Wellness Warrior!

Posted on: August 07 2018

Meet the winners of this year's Friends of MS-UK Awards!

The annual Friends of MS-UK Awards were launched in 2016 to recognise the commitment and valued support of some very special people. Each year we present just five awards to those who have gone above and beyond to support the charity and raise awareness of multiple sclerosis (MS). Many thousands of people make our work possible each year, so selecting just five is a tough task, but it makes the awards even more special to us and those who receive them.

Every day this week, we'll be revealing each of the well-deserved winners and finding out, in their own words, what it means to be awarded such an accolade...

 

Brendan.pngBrendan Gordon

Upon joining us in January 2016, Brendan became an important member of our volunteering team, supporting clients at our Wellness Centre Josephs Court, often three or four times per week!

Brendan’s dedication enabled MS-UK to provide support to people affected by MS and other neurological conditions, and he gave us many hours of professional support.

He said: 'To be honest, I feel quite humbled and proud to get this award, it’s not something I ever thought about. I enjoyed volunteering at Josephs Court as soon as I started, there is something about the place that draws you in.'

Friends of MS-UK 2018 award winners revealed!

Posted on: August 06 2018

Meet the winners of this year's Friends of MS-UK Awards!

The annual Friends of MS-UK Awards were launched in 2016 to recognise the commitment and valued support of some very special people. Each year we present just five awards to those who have gone above and beyond to support the charity and raise awareness of multiple sclerosis (MS). Many thousands of people make our work possible each year, so selecting just five is a tough task, but it makes the awards even more special to us and those who receive them.

Every day this week, we'll be revealing each of the well-deserved winners and finding out, in their own words, what it means to be awarded such an accolade...

Simon Gauge

2016 Simon Gauge_Marathon_large_Jpg025.jpgIn 2016, Simon raised the most amount of money in aid of MS-UK for a single event when he undertook the Virgin Money London Marathon. Simon’s efforts to achieve an amazing total of £33,000 had a real impact on our work to support people affected by multiple sclerosis (MS).

Simon was inspired to run by his brother Phil, who lived with Primary Progress MS. Simon continues to share memories of Phil and his eternal sense of humour, inspiring others to support MS-UK in the future.

Simon said: 'Thank you very much for the award. Running a marathon to raise money was nothing compared to the challenges that I saw MS present to my brother Phil and I dedicate the award to him. He never let MS define him and fought his battle with dignity. It is a comforting thought that the money raised would offer support to others to do likewise.'

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

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

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