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Mr Brightside

Posted on: June 15 2021

msuk photo 2.jpgTom Ledson leads an optimistic life. For Men’s Health Week, he shares what he does to boost his own wellbeing

I have always been positive and optimistic even before my multiple sclerosis (MS) diagnosis.

A particular hobby of mine is playing the ukulele. I taught myself to play at the age of 11 when I bought a ukulele from a school friend. I learned three basic chords and a few songs. I played for about six months and then stopped for no particular reason other than that I was young and that's what young kids do, or don't do. I didn't touch the ukulele again for over 40 years. My playing resumed just before I got MS. I found I had forgotten very little over those 40-plus years.

Staying positive

I have lots to keep me active. By doing things, I remain positive all the time. I even see my MS condition as a positive thing, using it as an example to help others.

I also teach beginners how to play. I have set up many ukulele groups, and must by now have of taught at least 200 people. The ukulele is an ideal instrument for those with MS. It is           small, easy to learn and very versatile, too. It is also very cheap to buy. In fact, you can buy one for around £20. You can play all kinds of music – pop, folk, children’s nursery rhymes, sing-a-long songs, and so on. With just three basic chords it is possible to play over 100 songs including rock ’n’ roll. It is a pleasant instrument that becomes a sort of a friend – a real antidote to loneliness.

Complementary therapies

Since my diagnosis, I have taken active participation in my lifestyle, including hyperbaric oxygen therapy, and aquatherapy. I am a member of the neurotherapy centre at Chester. Since the pandemic began, I am actively engaged in home exercise, which includes walking with my stick, Nordic walking poles or a rollater, my personal walking machine, online exercises, and some physiotherapy leg exercise I got from the hospital physio. I also do regular exercises on Zoom with neurotherapy centre staff. I would recommend as much physical exercise as possible. You just need to keep moving. It's a case of use it or lose it.

I would recommend that people take their opportunities as they arise and see where life takes them. I would advise them to do things rather than try and do things, just do rather than try. They may not do well at first, (in fact they probably won't) but their persistence will pay off and they will get better in the end. I am quite sure of that. If they just try, then they give up too easily. Do things, and you'll get there. Keep learning. There is always new stuff to learn. Life is but a short journey. Enjoy your ramblings and where they take you.

I have learned to live with MS. Strange as it seems, I sometimes see it as a sort of bonus. I have made many contacts and met lots of interesting people, many with MS. I love helping people, so if anyone reading this is interested in learning the uke, writing poetry, or songs, drop me an e-mail at uketom1@gmail.com – I will be happy to get you started, or just for the chat. You won't be disappointed, I promise.

Loneliness Awareness Week - 14-18 June

Posted on: June 14 2021

Last year MS-UK launched our report on Loneliness and Isolation during Loneliness Awareness Week in the height of the COVID-19 and lockdown number one where we were all been forced into isolation! A year on we have made delivered on some of the next steps which Diana Crowe, Head of Services here at MS-UK would like to share. Here's just some of the highlights. Diana.jpg

Peer support

We said we would look at creating a new online forum for people affected by multiple sclerosis (MS) however when we conducted our research we realised that there were already so many great forums out there. Instead, we shared videos on all of our social media channels about what online forums are, how to access them and how to stay safe when using them. We also created a webpage to share the different forums with the MS community.

At the beginning of 2021 we also launched our peer support service which is part of MS-UK Online. We are connecting people within the MS community who have common interests through our different online Peer Pods. Please email peersupport@ms-uk.org if you would like to find out more how you can meet others.

Mental health

We have continued to provide our online counselling service which is delivered by telephone and also by Zoom. We launched in September single session therapy which is a one-off session with a counsellor who helps to find a way forward with a specific MS-related issue that is impacting on life right now. Due to current high demand we are unable to take any referrals but are working hard to increase capacity and reduce waiting times. Please email counselling@ms-uk.org if you want to register your interest in the service and be informed when we are taking referrals again.

We continue to offer Mindfulness courses that are designed to help people with MS live more consciously and to help manage their MS. We have a nine-week Mindfulness Based Stress Reduction course and a four-week course which offers a less intensive option and is a good introduction. Please email register@ms-uk.org if you would like more information.

In October 2020 we ran a campaign on World Mental Health day which enabled us to share information about support available at MS-UK and other resources and services with different mental health organisations. In March this year we ran a campaign during National Complementary Therapy week to showcase the many therapies that for some really benefit individuals. Please take a look at our Choices booklet.  

Raising awareness

Promoting kindness was really important for the MS community so we ran a campaigns on World Kindness Day last year and in February this year on Random Acts of Kindness Day. We encouraged people to send one our postcards to reach out to someone in a random act of kindness which can make such a difference to wellbeing. Watch this video if you missed it to hear some of the stories you shared!

What's next?

We will continue to do what we are doing and ensure that we do not lose sight of the issues of loneliness and isolation and work with our staff to help them recognise signs and how to support people more effectively. We are starting to talk with link workers within social prescribing services to make sure they are aware of the support available to people affected by MS.

This week we will be launching our three new Peer Pods to continue to grow our Peer Support service. They have all been chosen by our Virtual Insight Panel and we invite you to take a look and get involved. Please visit the webpage about our Peer Support Service for more information. 

Watch Diana's video on Loneliness Awareness Week

Meet Katie, our new Events Fundraiser

Posted on: June 09 2021

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Hello, I’m Katie and delighted to have recently joined MS-UK as Events Fundraiser. My role is to recruit new fundraisers to participate in a range of events. This can range from active swimmers, first time runners looking for a challenge or even those wanting to fundraise from the comfort of their sofas by playing video games.

I am really grateful to have the opportunity to work for such a great charity, to help raise awareness and change so many lives. Whilst working for a charity is a new experience for me I have been involved in a number of charity events and have raised money running the London Marathon, cycling from London to Brighton and climbing Mount Kilimanjaro.

I’m really looking forward being part of our fundraisers' journeys from sign up to the finish line and seeing the huge buzz that comes from these incredible events.

Introducing Shaun, our new Helpline Officer

Posted on: June 09 2021

Hi, I‘m Shaun and I am the most recent addition to the Helpline and Information team here at MS-UK. I am proud to have joined such a wonderful charity, which comprises of great people who have been extremely supportive from day one. Shaun 5.jpg

Being a Helpline and Information Officer for MS-UK is both rewarding and challenging. No single call or contact is the same, from signposting individuals to services relevant to their needs to simply being an emotional outlet, every person that contacts us has requirements unique to themselves. I feel that it is a privilege to be in a position whereby I can provide assistance and support to those affected by multiple sclerosis (MS), a privilege that comes with great responsibility given the trust that the people who contact us afford us. Being affected by MS is a highly personal issue and on occasion clients who call our helpline feel that they have no one else to speak to. These can be the most satisfying of calls to handle as simply being there and listening to them, being that emotional outlet which otherwise they wouldn’t have, can be such a positive and therapeutic experience for them.

For the past 20 years or so, I have worked mainly in customer care and client care management, and I have no previous experience of working for a charity. During my short time at MS-UK I have been pleasantly surprised at the enthusiasm of all of my colleagues. This enthusiasm is infectious and is something that I have rarely encountered during my working life.

Outside of work my passions are my family, cycling, Sheffield United (I was born and raised in Sheffield!) playing football and tennis and trying to keep fit!

BackHug ‘backs’ MS-UK 925 Challenge

Posted on: June 03 2021

Why Team BackHug are supporting MS-UK’s 925 challenge, in homage to the company’s roots. BackHug.jpg

When the MS-UK team invited us to apply for the ‘925’ challenge, it was quite simply a no-brainer.

This was the perfect opportunity to push our physical capabilities to the next level and nurture our team spirit, while contributing to a cause that we cared about.

We have a strong bond with the multiple sclerosis (MS) community, ever since our founder Chongsu’s days as a physiotherapist.

When Judy Graham, MS-UK’s New Pathways’ editor, met Chongsu in 2013, long before he founded BackHug, little did they know that eight years later a much larger BackHug team would be running 925 kilometers to raise money for MS-UK.

Judy had discovered Chongsu in a Sunday Times article that described how Alison Peebles, a Scottish actress with Primary Progressive MS, who starred in Taggart and River City, benefited from Chongsu’s treatment.

Chongsu’s manual treatment focused on releasing tension from the centre of the back. This in turn would alleviate tension and painful symptoms throughout the rest of the body.

Using his engineering skills, Chongsu went on to create a robotic device which replicated that manual technique. Around 40 units of the first version were released to people with MS in 2017, just before Christmas.

Since our article earlier this year, where we shared our reasons for partnering with MS-UK, we have gone on to deliver the latest BackHug device to customers across the UK, 85% of whom, like June who featured in this article, are living with MS.

Fast forward to today, and June Roger is benefiting greatly from using BackHug at home. Here’s what she had to say about her experience so far:

“Since starting to use the BackHug (approximately 5 times per week) I have found that my body feels much looser and less rigid, especially in my neck and shoulders, allowing me to find daily tasks, such as reaching for items, much easier. As well as that, I have found that my spasms and pain, which used to be nearly constant, have almost disappeared!”

We are grateful for this opportunity to further support the MS community both through the 925 challenge and the £50 donations we make for every BackHug subscription we receive.

What is BackHug?

BackHug is a smart back care device with 28 robotic fingers that you can operate via Bluetooth with our smartphone App. It is designed to release tension from the centre of your back and shoulder blades, alleviating aches and pains throughout the entire body.

For more information, please visit our website at www.mybackhug.com

*BackHug is classed as an electrical appliance, not as a medical device. It does not claim any medical benefits for any medical conditions.

Become a Community Champion! - Volunteers' Week 2021

Posted on: June 01 2021

Heather has been a Community Champion for MS-UK since April 2019. This is her story. Heather Swan.jpg

I initially got involved with MS-UK when I volunteered at the Virgin Money London Marathon in 2018. I found it incredibly rewarding to be part of something that made such a difference to MS-UK and, I was so inspired by what the runners achieved, that I even took on the British 10k myself in March, and raised £300! 

Since then, I have gone on to complete the Colchester Half Marathon for MS-UK (raising a further £470) and volunteered at several fundraising events. When the opportunity arose to become a MS-UK Community Champion, I jumped at the chance. 

Why I do it...

I lead a very busy life and really don’t have as much time to give to charity as I’d like, but being a Community Champion means that I can help to raise money for MS-UK in my own time, without too much of a commitment. It is completely flexible around my busy lifestyle. 

I have seven collection pots placed at various shops in my local area, and I change them every three to four months when I am passing by. I find it so rewarding when I empty the collection pots and find out how much has been raised. The pennies really do add up! It’s also lovely to speak to the different shops about MS-UK and how they support people affected by multiple sclerosis (MS). It’s surprising how many people have a connection to the condition when you get talking, and I know by having these conversations I am helping to raise awareness for the charity. 

If somebody is considering becoming a Community Champion for MS-UK, I would definitely recommend it. I always feel so valued and that I am part of the MS-UK family. I know what I am doing is making a positive difference to those affected by MS and I’m proud to be out there with my MS-UK ID badge on! 

If you would like to be part of something special and become a Community Champion like Heather, get in touch with our Fundraising team by calling 01206 226500 or emailing fundraising@ms-uk.org to find out more! 

Why I volunteer for MS-UK - Volunteers' Week

Posted on: June 01 2021

Meet Kylie, one of our newest Community Champions! Becoming a Community Champion is a great way to raise awareness of multiple sclerosis (MS) and help raise vital funds to support MS-UK. Read Kylie's story to find out what it's like to be a Community Champion. Kylie Aggio.jpg

Why I volunteered... 

I volunteered for MS-UK as I have MS myself; I’ve recently found out more about this particular charity and liked what I heard. I haven’t been involved in any of the MS charities before as I found the volunteering a bit overwhelming with working and bringing up my daughter. I’m now at a different stage in my life where life isn’t quite so hectic, so thought it would be nice to try and do something positive that benefits those with MS who might need assistance in some way.

How did I get involved?

I got involved through one of my best friends Sally-Ann. She also has MS and volunteered recently. After she told me how lovely everyone was and how it wasn’t a huge commitment to be a Community Champion that was full of pressure. My biggest trigger with my MS is when I’m under pressure or stress and that isn’t a part of being a Community Champion, so I thought why not sign up!

What I do... 

Being a Community Champion means that I speak to local businesses, shops etc. about locating a charity pot in their premises. So I can just fit this in with my usual daily life. I don’t have to make any special trips anywhere unless I want to. If I’m going to the butchers for instance, to get our dog some meat then I’d just ask if they would be kind enough to take a charity pot. If it’s a no, it doesn’t matter, at least I’ve tried and it is still raising awareness. If it’s a yes, then that’s amazing!! Quick form to fill in and then you give them the pot and check in with them a few weeks later and see how it’s going. When a pot is full I would go and collect it, exchange for a new one and pay in the money to the MS-UK’s account. Of course you can always do more if you want to in terms of fundraising. I’m hoping to do a little challenge in July to try and raise a few pounds.

How does it make me feel?

I’ve literally only been doing this for a few weeks and I’m enjoying it so much. I feel like I’m contributing and that in turn helps someone. Also, by being out and about in my MS UK T-shirt it’s raising awareness. So even if I get a few knockbacks, it’s not a disaster or demotivating because it’s still creating a conversation around the subject.

What do I get back from it?

This is really going to sound over the top but I want to shout from the rooftops how much this also benefits me. I am a real people person and love nothing better than having a conversation with someone in person, whether I know them or not. Since I have not been able to work, I don’t really get that interaction anymore and it’s something I really, really miss. Going out into the community and speaking to people about MS-UK has brought that back into my life without any added pressure that would affect my MS. It gives me purpose and the feeling that I’m achieving something. Really does give me the feel-good factor because I’m doing something positive. I am so grateful that this opportunity is available. Aside from those positives, by talking to the local community, I have found out about a local MS centre that offers all sorts of therapeutic treatments that I had no knowledge of. I’ve met a lovely lady who took a charity pot for me whose mother had MS, we had a great conversation and she’s more than willing to do whatever she can. The whole experience is very rewarding even after just a few weeks. #TeamPurple all the way!!

If becoming a Community Champion sounds like something you'd like to do, click here or contact our Fundraising team today! Call 01206 226500 or email fundraising@ms-uk.org 

Volunteers Week 2021 - Laura Shukla, Board of Trustees

Posted on: May 28 2021

Meet Laura, a member of our Board of Trustees here at MS-UK. Everyone on the board is a volunteer, bringing their expertise to the table to help deliver MS-UK's strategy and help the community. Laura Shukla - Trustee - Copy - canva.jpg

I know first hand the value of volunteers in the planning and running of a charity through my own employment and hospice work.  Volunteering gives you a unique and privileged position to influence the care and support that those with conditions like Multiple Sclerosis need in their journey of living the life they want to lead.  This was the main reason I wanted to be a trustee at MSUK.  I truly admire the approach of holding those people with MS at the centre of MSUK’s work.  The ongoing positive messages that MSUK gives those individuals it supports, maintaining openness to current literature and research, is an approach that provides empowerment to those with MS to live healthier and happier lives.  The knowledge I have gained through my own employment I hope has been of value to the trustee board in providing direction and making decisions that directly impact the work of MSUK.  I have also enjoyed learning new skills and having the opportunity to see the vast considerations needed to ensure a charity runs to the best ability it can.  It has been extremely rewarding to see decisions made at board level playing out to the positive results to those supported by MSUK.  It is a privilege to volunteer as a trustee for MSUK and I hope that others will consider the skills and knowledge they may have that could support others in a volunteer capacity to ensure life-line charities are able to continue with their hard work that so many clearly benefit from.

Volunteers Week 2021 - Sally-Ann's story

Posted on: May 28 2021

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This week, it's Volunteers Week! It's a chance to honour and celebrate all of out wonderful volunteers across MS-UK, from our fundraisers to our Community Champions, our Board of Trustees and the Virtual Insights Panel (VIP). Everyone at MS-UK appreciates all of the hard work that you do, and we couldn't offer the services we provide without your help to further help the MS community. Sally-Ann is one of our Community Champions and this is her story.  

Hi, I’m Sally-Ann and I’ve only recently started to volunteer for MS-UK and straight away felt so welcomed to what I felt like was an extended family.

I myself have had MS for 9 years now and am extremely lucky that I’m still able to work full time and lead a pretty normal life with a few limitations.  My late mother also had MS and so when I got my diagnosis it was not something new to me.  My mother was primary progressive, confined to a wheelchair and my father her full time career. 

I know how awful this disease can be and how things can change overnight. Since my diagnosis it changed my life, and I’ve tried to do something to raise money for charity every year. This means I’ve walked 26 miles, climbed Snowdonia (twice), 100 miles in a month and various other things.
I’ve always wanted to raise awareness for MS and share my story to help others affected by MS.

When I saw the advert for a Community Champion I thought I could do that. I’d be able to get the name out there and get people thinking, raising the awareness and then raise money at the same time.  Ticks all the boxes of what I what to achieve.
From day one MS-UK have welcomed me with open arms and I really feel like they are an extended family, and because of this it makes me want to do more for them.  I want to think of other ways to raise money and awareness.
I get so much from knowing every little penny I raise helps them so much and they are so thankful, and I know this as they will ring and tell me.

So I know everything I do means so much to them, and therefore it means so much more to me. Thank you MS-UK!

The impact of COVID-19 on people with multiple sclerosis

Posted on: May 26 2021

Research student and MSer, Hannah Morris shares the findings of a survey to determine the impact of COVID-19 on people living with multiple sclerosis (MS). hannah resized.png

As COVID-19 restrictions are gradually being eased and the number of people contracting the disease goes down, we can’t help but reflect on the whirlwind of changes that we have had to endure over the last year and beyond. Not a single person in the world has not been affected by the situation to some extent or another, whether it be directly by catching it, or simply having to change the daily routine to adhere to social distancing protocol regardless of if you have even known anyone to have had COVID-19. 

Our article was recently published in the latest edition of the New Pathways magazine, relating to out interesting findings on the experience and impact of COVID-19 on people with multiple sclerosis (MS) and I wanted to use this opportunity to share a summary of findings to those who may not have had a chance to read the article.

Most people, like myself, reported that the COVID-19 pandemic has had a neutral impact on them and in most cases, this was due to a mixture of positive and negative things that have come out of the situation. The negatives people mentioned were mostly due to anxieties as a result of treatment interruption, whether it be related to medication, various therapies, or even just routine appointments. The positives mostly related to being able to use the extra time at home to engage in hobbies, be with family more, or just to rest, something that those of us who suffer with MS fatigue are massively grateful for!

Unfortunately, however, for just over a third of those who took part in the survey, the COVID-19 pandemic has had a negative impact on their mental health causing additional anxieties related to fear of themselves, or loved ones catching COVID-19, or the impact on treatment leaving them vulnerable to having a relapse or progressing. People who are younger, have a progressive diagnosis of MS and have existing psychological symptoms were more likely to report a negative impact.

We believe that these are the subgroup of people with MS that would benefit from additional support, perhaps by drawing upon the things that are working for those who have been managing well at this time. However, as we now see things returning to some level of ‘normal’ it is hoped that the negative impact may be lessened as treatments recommence and the risk of catching COVID-19 decreases.

This is just a summary of the findings, but if you’d like to read more, you can see the full article here: https://rdcu.be/cjTqW

Invitation to the MS community to support the development of a psychological intervention

As we make one final call for people to support in the next step towards developing a psychological intervention for people with MS to bridge a gap that is missing, yet needed for so many, we invite anyone who hasn’t yet to complete our survey here: https://forms.gle/5YTssp4pDVFciYEe9

You can also read more about our research on the topic here: https://research.reading.ac.uk/neurodegenerative-diseases/multiple-sclerosis/

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