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.
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 firstname.lastname@example.org if you would like to find out more how you can meet others.
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 email@example.com 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 firstname.lastname@example.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.
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!
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
We talk to Helen and Greg about how they manage Helen’s condition, and why love gets them through
Helen, 37, was diagnosed in January 2019 after experiencing symptoms of multiple sclerosis (MS) for around five years. Her husband Greg now cares for her. So how has this changed the dynamics of their relationship? “I think the diagnosis has made me appreciate Greg as a husband more,” she says.
“I read so many sad stories about partners not being supportive, so I count myself very lucky. Greg is a lot more hands-on with our son now, so it feels like a partnership more than me being mum and him being the breadwinner. Sometimes we have been forced into situations where he has had to become a carer in the fact that he has had to clean me up, get me into showers, and basically do things that I never imagined I wouldn’t be able to do at 37 years old.”
For Greg, Helen’s diagnosis has helped them work more as a couple than as individuals, but it isn’t easy. “It's hard watching someone you love go through this. I feel like I want to be home a lot more now and with a mixture of lockdown – I'm a chef, so I've been on furlough – and watching the progression over the year, I have changed my job to ensure that I am home more for Helen and my son,” he says.
Helen was unfortunate to experience a big relapse a year and a half ago. “For me, the loss of the use of my legs, bladder, bowel has been the biggest challenge physically. It's taken 18 months of physio and training to be able to do things again, and lots of different drug trials to find what works with my body. This has affected me greatly emotionally, and I have counselling to work through these emotions and address my worries about the future. These things can overspill into your mood and sometimes, I just have to step away from the situation and take time to myself to calm down and start to think clearly.
So what had Greg found to be his biggest challenge with Helen’s MS? “The biggest challenge for me has been realising that this won't go away,” he says. “The uncertainty of it all, even when it's stable – how long will it stay stable for? Is the drug is working? There are no definite answers and that takes its toll emotionally on both of us. We do everything we can to stay fit and healthy, and trying to stay one step ahead of the MS. When we had our bathroom and house redone, some of the considerations we put into place were keeping it accessible in case Helen ends up in a wheelchair. Having that as a real possibility was a little scary but is has also given us some control over the situation.”
The couple feel that to have honest communication is the best advice they can pass on to anyone in a similar situation to them. “Just be honest and open – some issues, like sexual things, just have to be openly shared and discussed. It can be really embarrassing. I have bladder and bowel issues but Greg just gets on with it and helps me when I need it,” says Helen.
“Just be patient and be there,” says Greg. “It's hard for me but is nothing compared to what Helen goes through every day.”
“It's a hard few years making the adjustments and it's a huge learning curve,” says Helen. “For me, the diagnosis was a blessing in some ways as it finally confirmed that there was something wrong and it wasn’t all in my head. It definitely takes a couple of years to find yourself find your groove and what works for you in terms of medication and pacing your life so that MS fits in with you and not the other way round.”
“It's going to be hard but it will be okay,” says Greg. “At the end of the day, you’re with someone that you love and you made those vows and you will stick by them because that's what's right.”
MSer and Feature Writer Ian Cook reveals his first-hand experience of becoming a carer
It may sound strange to say this but I believe being disabled is, in many ways, the perfect qualification to care for another disabled person. From 2013-17 I was involved in the care of my aunt (pictured below) and my mother (pictured right) at the end of their lives. Being a disabled person meant I knew all about aids, adaptations, and the benefits system. It made me empathic for someone who, like me, has physical difficulties, and I hope it made me sympathetic without being patronising.
I believe progressive MS gave me great understanding of how to help a 93 year old woman cope with Alzheimer’s and a 92 year old woman cope with bowel cancer. The reason I say this is that both these conditions involve immobility, incontinence and a range of problems which often bear an uncanny similarity to MS. That’s not to say progressive MS gave me all the qualifications. No, MS frequently robbed me of the physical strength to do everything required, but it gave me bags of empathy for two family members with similar problems to mine.
In the beginning
Things started to go wrong for my aunt around 2013. As a child my spinster aunt had always sent me birthday cards and this continued until 2012. Then in 2013 no card arrived. I waited a week then phoned. During a brief phone call it became clear she was having memory problems. A few months later as her next of kin I received a call from her GP which made me question whether my aunt’s problems were more serious. I decided something needed to be done.
I called the church my aunt attended and I spoke to the vicar. Yes, they had been worried about my aunt for some time. Within days I was at my aunt’s home in Sheffield, some 90 miles from where I live. On arrival it was clear my aunt, who had just been diagnosed with Alzheimer’s, needed help urgently and being her nearest living relative it was up to me to help her set up a Power of Attorney (POA) to manage her finances. I also fixed up a social services assessment. Within weeks a carer was visiting four times a day and the POA allowed me to pay her bills through her bank account. I also arranged weekly supermarket deliveries of food.
Lending a hand
As I became more involved in my aunt’s care it struck me Alzheimer’s was like progressive MS in the sense that you are always playing catch up with an illness that is constantly racing ahead of you. In progressive MS the big idea is the brain’s “reserve capacity” i.e. how much unaffected brain there is to compensate for the ravages of the illness. I think Alzheimer’s, which is also a disease involving the brain’s white matter, is similar and the fact it strikes people in their later life means the brain has shrunk to the point where there is little reserve capacity left to draw on.
Later in 2013 I found my aunt had been admitted to Sheffield’s Northern General Hospital in a confused state. The hospital said she was unable to be discharged home so I arranged for her to become a resident in a care home which was only 400 yards from her own house in Sheffield.
Juggling the load
While all this was going on, my widowed mother, also in her early 90s, and living in Paignton, was diagnosed with bowel cancer. I have two sisters, the elder of whom lives in the South West, and we had an informal arrangement that as I live in Birmingham I would take the lead in organising care for my aunt in Sheffield while my sister in the South West would take the lead in organising care for my mother in Paignton.
So, in 2014 my elder sister and I took out Powers of Attorney for our mother, a care home was organised and for two years I was travelling down to Paignton to see my mother in her care home and then up to Sheffield to see my aunt in hers. To say this was difficult for someone with progressive MS would be an understatement. There were several crises, but we somehow muddled through, ensuring that my aunt and mother were looked after for what I assumed would be a short period, and indeed my mother died in June 2016 and my aunt in September 2017.
What I know now
It may sound a strange thing to say, but looking back I think having MS has been good training because as a MSer my experience of dealing with the country’s labyrinthine care and health systems means I was able to ensure my aunt and mother had a good end to their lives. I never thought that having MS could bring with it any benefits but the past five years have made me reconsider this. I have learned a few dos and don’ts, I have made a will, set up a POA for myself, and bought a funeral plan. Without sounding morbid I have started to think about my own end of life care on the basis that one cannot live a good life without preparing for a good end of life and ultimately a good death.
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.
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.
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!
Adam and Sharon explain the challenges and rewards they've experienced since Sharon became his carer
Adam, 43, was diagnosed eight years ago with relapsing remitting MS, and in the last 18 months it has become secondary progressive MS. He lives with his wife, Sharon, 45, who is now his carer. So, how has his condition changed things for the couple? “Being diagnosed has most definitely made mine and Sharon’s relationship stronger and closer,” he says. “Over the years we have learned to appreciate each other’s strengths and weaknesses, and how to put them into play.”
“We still do pretty much everything together, albeit we just plan for things better. It really is all about management and communication. My wife is an angel of a woman and I’m lucky to have her walking this journey with me.”
Adam says that matching each other’s pace of life probably has been their biggest challenge. “In the early years, as I slowed down, Sharon sped up to somewhat compensate for both of us. This didn’t work and would throw us off kilter. We’ve found our groove now though.” Sharon agrees, “Definitely the pace has been my personal challenge. I’ve always been someone who went 100 miles an hour at everything and so, in the beginning, I found this frustrating. Over time, however, you start to learn the rhythm of the condition, and gain balance.
“I don’t look or think of my husband as any different since his diagnosis, so it’s hard to pinpoint exactly how the dynamic has changed. Physically, yes, he can’t do some of the things that he may be used to but there’s so many other things that he can do and that we have found that we can do together so that sort of eliminates that, if that makes sense.”
So what would the couple say to themselves at the beginning of their journey, if they had the chance to go back and impart some wisdom about what they know now? “If I could go back to the beginning, I would tell myself don’t be scared, it’s going be OK,” says Adam. “You are stronger than you know. There will be many moments when you want to get off this ride but, just remember, that’s exact what they are, moments. It’s such an old cliché, but, tomorrow really is a new day.
“For any new couple beginning this journey, communication is everything,” says Sharon. “Talk lots, but listen equally. Be there for each other but also give yourself what you need. Don’t think too far ahead, no-one knows what’s round the corner, so what’s the point in worrying? And last but not least, laugh. Some days you just have to find the funny.”
Both agree that Adam’s condition has strengthened their relationship, and they have grown together because of the challenges they’ve faced. “The diagnosis from day one just put life and our relationship in perspective,” Sharon says. “The little things just disappeared and suddenly the true value of what’s important took priority. I see this as a gift if I’m completely honest. We forget all too often to stop and appreciate simple things because life gets so busy.
“We both agree that MS was the best and worst gift, all at the same time. For every negative, it can unlock a new positive,” she says. “If I could go back, I would tell myself, don’t try and fix everything, and don’t get ahead of yourself, things will find their own way.”
For Carers Week 2021, we look at how to get a carer’s assessment to see if you are entitled to any support
If you’re an unpaid carer looking after a loved one or friend with multiple sclerosis (MS), the good news is, there may be support available. It’s a good idea to find out what you are entitled to.
There may be support groups and services near to you to help. Start by contacting your local council at https://www.gov.uk/find-local-council who will also be able to arrange for you to have a carer’s assessment.
For this, the council’s social services department will assess your situation to find out if you need any help with the role, anyone who provides a substantial amount of care for someone is entitled to an assessment.
You could be given various forms of support, including information on local support groups, equipment to help you care, respite care in order for you to have a break, and you may even be entitled to a personal budget to cover the cost of some of the needs you have in your role.
You could get help with gardening or housework, help with taxi fares if you don’t drive, advice about benefits, and training.
You only need to call your local council and ask for an assessment. Before the meeting, it’s a good idea to consider how your role as carer is impacting the rest of your life. For example,
Are you getting enough sleep?
Can you get out alone and do essential tasks?
Are you managing to eat well?
Can you cope with your other family commitments as well as your care role?
Is it difficult to juggle your work and caring?
Has caring impacted on your hobbies or socialising?
Once the assessment is done, you will receive a letter listing any support you are able to get, and who to get it from.
To kick off Carers Week 2021, we hear from Kerry, 43, who was already living with MS when she met Brian, 52. He is now her full-time carer
I was diagnosed with multiple sclerosis (MS) quite quickly in 2006. I'd had an episode of optic neuritis in 2004 (just in time for my brother's wedding!), then my entire right side went numb on the August bank holiday, which I thought was a trapped nerve. My GP telling me it was 'likely MS' floored me!
My long-term relationship ended in 2009, but not because of my condition. I then met and married another man, had a beautiful daughter in 2013, and my MS behaved for another three years.
In 2017, I was hospitalised for more than three weeks, culminating in an operation and leading to me needing a wheelchair on my discharge. My marriage had been stressed, but it deteriorated rapidly after this – we separated and have subsequently divorced.
And then, in 2018, I met Brian on a well-known online dating site. Our first date lasted eight hours, our second 14, and we're pretty much inseparable.
Lockdown was a bonus for us, as it enabled us to plan our future. We had decided very early in our relationship that this had to enable us to spend as much time together as possible!
We moved to Scotland from South Devon in October 2020, and Brian has officially been my full-time carer since then. For me, the key thing in making this successful has been full disclosure, right from day one, and communication.
I won't let MS define me, or restrict me in what I want and need from a relationship. Yes, of course it has an impact, it affects me physically and I can't pretend otherwise. But I've found that with the right person – and Brian is definitely my right person – it isn't an issue.
Brian loves me, so for him, being my carer is just a natural extension of that – he gets to handle my body and be far more intimate than maybe he would otherwise, but hey, I'd do it for him, so what's the issue?
I think I'd tell the 2006 me that for the right person, MS won't be an issue. And not to compromise – life really is too short.
Why Team BackHug are supporting MS-UK’s 925 challenge, in homage to the company’s roots.
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.
Do you ever wonder if you’re doing the appropriate exercises to help you reach your goals? Or maybe you’re wondering if improving your strength and mobility is even possible with a progressive condition like MS?
The information sessions with Dr Gretchen Hawley, will not only answer those questions, but they’ll leave you feeling empowered and informed. You’ll understand the process your brain goes through to create new neural connections, resulting in improved strength and movement. You’ll also learn appropriate exercises and techniques to improve your balance and muscle tightness, leading to better function in your day-to-day activities.
Dr Gretchen Hawley is a physiotherapist and Multiple Sclerosis Certified Specialist. Her expertise in MS-specific exercise and wellness strategies often result in her clients feeling more control over their MS. Her tools and strategies are easy to understand and implement into your daily routine.
The sessions covered so far have reviewed neuroplasticity and brain changes with exercise, how to exercise to improve your mobility, fatigue management, and spasticity management.
If you would like to know more about our upcoming information session by Dr Hawley, please click here.
Heather has been a Community Champion for MS-UK since April 2019. This is her story.
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 email@example.com to find out more!
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.
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!!
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.
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.
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!
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).
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/