This time next week MS-UK will be celebrating MS Awareness Week, and you can join us!
This year we are spreading the word about our newest national service, MS-UK Counselling. I would love you to get involved by downloading our Twitter and Facebook graphics...by adding them to your profiles you will be helping us reach even more people affected by multiple sclerosis who may benefit from counselling.
Right click on these images and select 'Save image as...' to download them to your computer:
Thank you for your help!
April is always an exciting month for us here at MS-UK as we mark MS Awareness Week, and 2018 is no different!
This year we are celebrating our newest national service, MS-UK Counselling. We launched the pilot of this service in October 2017 and since then have delivered over 150 telephone counselling sessions to people with a diagnosis of multiple sclerosis. But we want to help even more people!
At MS-UK, we believe that it’s good to talk. However, we know that there can still be a stigma around accessing counselling, and we want to break down these barriers so people diagnosed with multiple sclerosis can get the support they need.
So, this MS Awareness Week I ask you to help us spread the message that it’s good to talk! Throughout the week of 23 – 27 April we will be posting on Facebook and Twitter all about MS-UK Counselling, and it would be great if you could help us spread the word by retweeting or sharing our posts. Thank you!
Keep an eye on our blog for updates as we near the big week...
I am pleased to say New Pathways issue 108 is now landing on doormats across the country! As always we have a packed issue, full of all the latest multiple sclerosis (MS) news and research, including drug updates and the latest cannabis study findings.
As the sunshine begins to make an appearance, we get topical with lots on vitamin D. MSer Ian Cook puts vitamin D tablets and sprays to the test (see page 30) and Kahn Johnson reveals what happened when his vitamin D levels became toxic on page 16.
Also in this issue, MS Nurse Miranda Olding discusses sexual dsyfunction and what can be done to help (page 14) and we have the big interview with the star of Channel 4 programme 'The Search for a Miracle Cure' Mark Lewis (page 24).
I hope you enjoy reading this issue, and please do email me your comments and letters to email@example.com.
Editor, New Pathways
P.S. Don't forget New Pathways is available to read on the go. Download the My MS-UK app from the App store on your phone or tablet device today!
Most people with MS recognise the expertise of their doctors and nurses, but somehow feel that there doesn’t seem to be enough time to cover all the things that matter to them and sometimes important things get missed. A group of people with MS and healthcare professionals are working together to improve clinic visits.
The group is called MS in the 21st Century. Many countries are represented and we learn from each other. We meet up a few times a year. We work to improve MS health care by understanding each other’s priorities and modelling partnership between people with MS and health professionals.
We have recently published a paper in a scientific journal which includes authors who have MS and also authors who are health professionals. This is a ground breaking project. The authors have discussed the priorities they have in an MS clinic visit and agreed a list of unmet needs from the viewpoints of both people with MS and health professionals. We have developed the paper jointly. As well as highlighting our different perspectives, we have also made practical recommendations. Our aim is to bridge the gaps between what people with MS and health professionals expect and provide.
We hope that the publication of this paper will be a key step towards ensuring that MS care addresses the expectations, priorities and needs of people with MS. It is vital that we work together to support people with MS to be fully engaged in managing their own condition. The paper emphasises the perspective of people with MS and how essential their involvement is in high-quality MS care.
From my own work as a neuropsychologist, I am particularly concerned to increase understanding of the psychological impact of MS, including cognition, mental health and wellbeing. We need to increase awareness of how these impacts can be recognised and successfully addressed.
Birgit Bauer, another author and a person with MS says, ‘As a person with MS, I cannot overstate the significance of this publication. I am hopeful patients everywhere and their healthcare teams will recognise the need for better communication and partnership with the ultimate goal of more effective and personalised care.’
"Unmet needs, burden of treatment, and patient engagement in multiple sclerosis: a combined perspective from the MS in the 21st Century Steering Group" is published in the peer reviewed journal, Multiple Sclerosis and Related Disorders (MSARD), and is freely available online now. DOI: 10.1016/j.msard.2017.11.013
If you are a person with MS, or are close to someone who has MS, and you are interested to help Professor Dawn Langdon’s team in their work on psychological aspects of MS, please email firstname.lastname@example.org.
We just wanted to let you know about this important source of information that our MS-UK Helpline team regularly uses to support the multiple sclerosis (MS) community.
The Disability Rights Handbook is a guide to benefits and services for anyone with a disability, their families, carers and advisers. It contains a wealth of information relating to the benefits system, as well as social care services and help for carers. This guide will be relevant to many people living with MS.
Clients who use the MS-UK Helpline have let us know how valuable the information provided by our advisors is and, since a lot of that information can be found in the Disability Rights Handbook, we wanted to share it with you. If you would like to buy your own copy, you can do so on the Disability Rights UK website store.
We wanted to let you know this was available to pre-order as last year’s handbook sold out in quite quickly!
As always, though, our MS advisors are available to listen to you, talk things through with you and keep giving you as much helpful information and support as possible.
Yesterday evening, BBC One’s The One Show aired the story of one MSers decision to end his life at Dignitas in Switzerland.
Colin Campbell, 57, from Scotland was diagnosed with primary progressive multiple sclerosis (PPMS) in 1995. In the knowledge that his MS would get progressively worse he had decided that “another winter would be unbearable”. He had chosen 15 June as the day he was going to die. He didn’t want to be alive and more disabled than he is now. His story even made it onto a local Scottish news channel. Little did he know that just half a mile down the road from where he was living a stranger was watching - another MSer Rhona Tynan. She had watched his story and decided that she “couldn’t let this man go ahead and do this without trying”, so she phoned up the TV station and got in touch with Colin. She asked him to come and see her and how she was coping.
“I just wanted to see if I could help him see if things could be better,” she said.
Colin did go and see Rhona and they formed an unexpected friendship. After spending two “enjoyable” days together and after discussing things with her Colin decided to cancel his 15 June appointment in Switzerland. Seven months later, Colin discussed how meeting Rhona had changed his life. He said: “My flat had become a prison. I couldn’t get out, there were two flights of stairs. You lose the will to live.
“No one had explained to me what options there were,” he explained. “If Rhona hadn’t have contacted me that would have been it for me on the 15 June. It would have been all over,” he added.
Rhona said: “It became very clear to me that Colin didn’t have the correct support for quality of life.” “I know a scooter gave me quality of life because it allowed me to get out and about. Colin didn’t have one and he didn’t know how to go about getting one.” So they decided to have a day out together trying out and testing some scooters. But getting a scooter was just the beginning. He also found out that he was entitled to a ground floor accommodation and 24-hour assisted living. Inspired by her relationship with Colin, Rhona has now set up a networking group for other people who have found themselves in a similar situation. Rhona has also recently been to Mexico for stem cell treatment and is seeing positive results. She talks about her improvements on the show and has most recently managed to walk 50 steps while holding her husband’s hand, something she wasn’t able to do before the treatment. If you missed the show, which aired at 7pm on 14 Feb 2018, and would like to watch the full interview visit the BBC iPlayer and scroll through to 32:40 minutes. If you would like to read more about assisted dying, subscribe to New Pathways magazine issue 107 and read a great piece written by Journalist and progressive MSer Ian Cook, as he discusses your right to die. New Pathways is a magazine for people living with MS. The much loved title has been running for 25 years and is a great source of information and support for many MSers. To subscribe click here, or call 01206 226500.
On Monday 13 November Nileema (our Counselling Coordinator) and myself went along to the MS Trust conference in Hinckley, Leicester!
The MS Trust is a UK charity that produce multiple sclerosis (MS) information and support MS specialist health professionals. This year they celebrated their 21st annual conference, welcoming some 300 guests to learn, share expertise and focus on improving care for people living with MS.
We went along to seminars about sharing best practice and understanding MS and mental health. At the plenary session we learnt more about high risk MS drugs and keeping safe, as well as understanding and supporting risk perception to people with MS. All of the speakers were excellent, and it was a fantastic day.
Nileema and I also spoke to people about our new service – MS-UK Counselling. This is a brand new telephone counselling service for people living with MS in the UK. You can find out more and register on our website at www.ms-uk.org/counselling.
Thank you to the MS Trust for making us feel so welcome, and thank you to all of the MS professionals who stopped by our stand and chatted with us.
Looking forward to next year’s conference!
As the cold nights draw in and the scarves and hats come out of the cupboard, we'll be looking at ways to stave off colds this winter. Over the next few days we'll be looking at a different thing you can do...
We all know that eating a healthy diet will ensure our bodies get all the vitamins and nutrients it needs to stay healthy, but when the weather changes most of us go searching for comfort food. Don’t deny yourself an indulgent treat, but try to eat foods that will fill you up so you won’t want to snack.
A recent study from the University of Warwick revealed chicken, mackerel, pork shoulder and beef sirloin steak as some of the most filling foods. They also found that plums, apricots, avocados, lentils and almonds have the same hunger-busting effect.
Check back tomorrow for our blog about vitamins!
Read our Choices leaflet about diet and nutrition and download it for free at www.ms-uk.org/choiceslife.
Not everyone has time to visit the news section on the MS-UK website every day (its ok, we forgive you), so here’s a summary of some of the latest developments in MS.
I’ve got a gut feeling
Recently there has been a lot of news regarding gut bacteria, with some interesting studies highlighting how changes to gut bacteria could lead to a possible future treatments for MS.
Reading these stories, I found myself researching the different gut bacteria thinking maybe I should change my diet accordingly, but I quickly realised it’s not that simple.
More research is needed to get to treatment stages, but the signs are encouraging.
Click the stories below to read more about the latest developments.
And with tummies in mind, the latest issue of New Pathways magazine features a four-page feature about the Overcoming MS Recovery Program, one of a few popular diet choices for people with MS. Find out more by subscribing and why not try out the free recipe too?
News for progressive MS
Scientists at Yale University have uncovered two closely related cytokines that may explain why some people develop progressive MS and could lead the way in developing a novel treatment to prevent progressive forms of the condition. Click here to read the news story.
Let’s talk genes
MS is not hereditary, but it is genetic and researchers at the University of Florida Health got everyone talking recently, when they revealed they had found a way to inhibit or reverse MS using a novel gene therapy technique that stops the condition’s immune response in mice.
Of the mice that received gene therapy, 80% went into near-complete remission after having hind-limb paralysis. This is a promising outcome, but more studies are needed.
Bexarotene, a drug that could help the brain regrow myelin in people with MS, has started its phase II clinical trial.
The trial is only open to people with relapsing MS who are currently on a disease modifying therapy (DMT). It will involve 50 people and the first person involved started their treatment in March.
Recruitment is taking place in Cambridge and Edinburgh, but not everyone will be eligible because of other important criteria.
The trial will run for four years to study the long-term benefits for people with MS.
For more information about the criteria for the trial click here. To access the trial you will need to be referred by your GP or neurologist
For more daily MS news, visit the MS-UK website.
New Pathways Editor
In this guest blog, Patricia Gachagan tells us all about the new radio network for the global MS community!
The MS & Me Radio Network is a division of The Multiple Sclerosis Global Support Network. MS & Me Radio brings you streaming radio broadcasts around the globe 24 hours a day, 7 days a week. Our goals to increase multiple sclerosis awareness, self-advocacy and aspects of living with MS from peer to peer information and health care providers.
‘Positively Different MS’ airs every Sunday @ 9.00 pm and reruns on Mondays @ 1.00 pm and 7.00 pm (UK times)
My show is based on my MS jigsaw - which is all the pieces I have tried and tested to manage my
My show is based on my MS jigsaw – which is all the pieces I have tried and tested to manage my MS over the last decade to live as full and enriched a life as I possibly can with MS. The show interviews a weekly guest with specialist input on my MS jigsaw pieces, has ‘snippets’ of real life coping and management experiences and offers ‘POSITIPS’ on ways to try and move our lives forward. There are many pieces of the MS jigsaw on the show. It is an uplifting show trying to reach all us ordinary – or should I say extraordinary people – living life with Multiple Sclerosis. My aim and my reach is to find new ways to do old things, go on that circuitous journey to acceptance, find the positives and leave those negatives alone. Believe in ourselves and our futures and search to find ways to see MS as a new beginning now and not that life sentence and harsh ending of everything we have ever known – that we all feared so much at diagnosis.
There are many other shows hosted from around the world so take a look… https://msandme.airtime.pro/
More information @ http://www.patriciagachagan.com/radio.php
Positive thoughts always and together wecanfindaway.com