Latest news with #MSSociety
Daily Record
11-06-2025
- General
- Daily Record
Incredible legacy left by Scots woman diagnosed with MS as loved ones dedicate 40 years to charity
Mary Donald's sister and husband have given more than 40 years to others through volunteering. When Mary Donald died last year, aged 68, she left behind her devastated husband and sister. But she also left an amazing legacy. Because, inspired by her, Mary's loved ones have given more than 40 years to others through volunteering. Mary had multiple sclerosis (MS) and persuaded sister Sheena Rollo and husband Robert Donald to help out at the MS Society's Dumbarton and District Local Group, which she attended. Decades later, they're both committee members and Sheena is the Group Coordinator. To mark Volunteers' Week (Monday 2 to Sunday 8 June), Sheena and Robert shared the benefits of giving time for others, and are encouraging everyone to give volunteering a go. Mary was just 26 years old when she was told she had relapsing remitting multiple sclerosis (MS). She lived with vision and balance problems for three or four years before being diagnosed. Back then, in the 1980s, much less was known about MS, and far fewer treatments were available. But Mary found support through the MS Society's Dumbarton and District Local Group. And she soon persuaded her husband and sister to roll up their sleeves and get involved in group activities. Robert, now 70, a retired mechanical engineer living in Helensburgh, recalled: 'Mary joined the group and at first I was just a 'hanger on'. I must have joined in the late 90s but I got really involved just before 2000. 'They were looking for somebody to take the minutes in the meetings so muggins volunteered! I was still working when I first started volunteering with the group.' Sheena, 68, who lives in Dumbarton and previously worked as an administrative officer for local government, said: 'I took early retirement and Mary started to put a bit of pressure on me. 'She said, look, we really need someone with your experience; she really buttered me up! She said if I went along and helped out it would give Robert a real break. 'So in 2007 or thereabouts, that's when I got involved.' However, it soon became apparent to Sheena that Mary may have had an ulterior motive for bringing her sister on board. The mother of two, who has four grandchildren, continued: 'The real reason she asked me was because she was aware of my organisational skills, and they were trying to organise a 40th birthday party for the branch. 'The group had been providing support to the community for 40 years and they wanted to mark the occasion.' And that desire to celebrate and enjoy themselves continues within the Dumbarton and District Local Group today. Because in addition to offering sessions that can help people manage their symptoms, and providing a safe space to discuss anything relating to the condition, the group is also very much about life outside of MS. Sheena continued: 'People do talk about their MS sometimes. If the group sees someone's struggling then the conversation will come up. But they'll also talk about their families, holidays, and shopping. They're very chatty about the 'normal' things in life. 'One week we have our group drop-in, then the next week we have a yoga class. They're both at the same venue – the Helensburgh and Lomond Civic Centre. 'We also have a meditation class on Zoom. We started it during the pandemic, when we couldn't get out, and it was a way we all kept in touch. 'We kept it going because everyone loved it so much. 'We have our lunches every four weeks, at a local restaurant. We always have a great turnout for that, it's a very popular event. 'We had a shopping trip recently to the Livingston Designer Outlet, and we usually have a shopping trip at Christmas too. 'And we have parties. We recently had an afternoon tea party to commemorate VE Day, and an Easter party, which the Easter Bunny turned up to and everyone got Easter eggs! 'We have lots of fun but I think the most fun we have is at our Summer Olympics. We get oversized garden toys – huge shuttlecocks and badminton rackets, hoopla, and balls! 'It's a very fun group and everyone gets on so well together.' The group turnout tends to vary between about 13 and 22 people. These include people living with MS and their families, friends and carers. The age range is becoming more mixed with the youngest current attendee in their 30s and the oldest in their mid-80s. Some of the committee members and volunteers have MS while others have a connection to the condition, often through a loved one as Sheena and Robert do. When asked how their volunteering benefits others, Robert said: 'It gets people out of the house and out of their shell. A lot of people are sitting in their houses on their own and the only people they see are their carers. 'If you can get them out, go for a lunch, get people all together, it's really good.' Sheena added: 'I sometimes sit back when we're having a drop-in or an event where we're celebrating something. I love to sit back and just listen. 'And the noise of them all chattering and laughing really gets to me — I get a wee bit emotional when I hear all of that. 'One of the reasons I've been group coordinator for so long is because you need somebody to guide everyone else; you can't have a successful group without anybody at the helm. 'But I also want to do this role, I get great pleasure from it.' Mary would have turned 70 last month. She continued working, as an administrative assistant in local government, until she was 40 years old. Shortly after stopping work her mobility deteriorated and she became a full-time wheelchair user a few years later. Her diagnosis changed to secondary progressive MS. Yet Robert remembers 'she always said she was lucky'. And Sheena added: 'She had an amazing outlook and just took it on board. 'We knew she was in pain but she never complained.' And her grieving husband and sister have vowed to continue the volunteering they started because of Mary. Since helping to arrange that 40th birthday party more than a decade ago, Sheena has organised transport for people attending group activities and taken on the roles of public relations officer and fundraising officer. She's been the group coordinator for more than 10 years. Robert has remained in administrative roles and is now the group secretary. Sheena's daughter Wendy Rollo, 45, has also volunteered at group events for the past 12 years in between working. Her tasks have ranged from chatting to attendees to doing the washing up. Along with their fellow committee members and volunteers, Sheena and Robert worked to raise the profile of the group locally, building relationships with journalists and reaching out to the MS community throughout West Dunbartonshire and parts of Argyll and Bute. In 2018, the Dumbarton and District Local Group won the Community/Voluntary Team Champions category at West Dunbartonshire Council's Provost's Civic Awards. And in 2012, Sheena was named Dumbarton Citizen of the Year by West Dunbartonshire's Provost for her work with the group. More than 17,000 people in Scotland, and more than 150,000 people in the whole of the UK, live with multiple sclerosis (MS). MS is a condition that affects nerves in the brain and spinal cord, and this impacts how people move, think, and feel. Symptoms are different for everyone and are often invisible. Some of the most common MS symptoms include fatigue, loss of balance and dizziness, pain, vision problems, and problems with memory and thinking. It's a lifelong condition and, although there's currently no cure, people don't die directly from having MS. However, if they're severely affected, the risk of dying from a complication related to MS (like an infection) is larger. The MS Society provides support, funds research, and campaigns to improve the lives of everyone affected by MS. Throughout the UK, including here in Scotland, more than 200 MS Society Local Groups bring people together to reduce isolation and offer support through events, exercise classes, and more. The groups are all run by volunteers. Jo Anderson, Director for Scotland at the MS Society, said: 'We wouldn't be able to make the impact we do without the support of our amazing volunteers, like Sheena and Robert. 'Whether they're raising funds, supporting campaigns, increasing awareness, or delivering services, every single volunteer is helping to make life better for people affected by MS.' The MS Society's Dumbarton and District Local Group is always on the lookout for new volunteers. When asked what advice they would give to someone who was interested in volunteering but wasn't sure where to start, Robert said: 'We'll consider anyone who's interested in volunteering. Just come along, give it a go, get to know the guys, and see if you like it.' Sheena added: 'We're very relaxed and although there has to be some structure to our events, it's very informal. If anybody comes through the door they'll be made welcome. 'We're looking for volunteers to do all sorts of things, from sitting down and chatting with people to helping to clear the tables and wash the dishes. And who knows, if they like it and they keep coming back, one day they might think about joining the committee!' To find out more about volunteering with the MS Society's Dumbarton and District Local Group, email dumbarton@ or contact them through the 'Dumbarton and District MS Group' page on Facebook.
Daily Mirror
30-05-2025
- Health
- Daily Mirror
NHS alert over 'lifelong' issue affecting the brain and spine
Around 150,000 people are living with the condition in the UK, while a further 7,100 are newly diagnosed each year The NHS has highlighted the possible symptoms of an incurable health issue that dramatically impacts the central nervous system. While it can affect anyone at any age, the condition is more common among people between 20 and 50 years old. Posting to X this morning, the health service said: "Today is #WorldMSDay. Multiple sclerosis (MS) is a lifelong condition which can affect the brain and spinal cord. There are lots of possible symptoms of MS and everyone with the condition is affected differently." More than 150,000 people are living with MS in the UK, while almost 7,100 are newly diagnosed each year, according to the MS Society 's estimates. The condition arises when the immune system attacks the brain and nerves, though the exact triggers remain largely unknown. Possible symptoms of MS can include: Extreme tiredness/fatigue Memory and concentration issues Sexual problems, including a dry vagina or erection problems Blurred vision, eye pain and other sight issues Needing to pee more frequently or losing control over urination Feeling off balance, dizzy or clumsy Numbness or tingling in different parts of the body Muscle cramps, spasms and stiffness There are three main types of MS, and symptoms can vary significantly from person to person. For instance, the first primary type of MS, 'relapse-remitting', describes fluctuating symptoms with different degrees of severity over time. However, this often gradually develops into 'secondary progressive' MS, where symptoms become constant and also steadily worsen. Meanwhile, 'primary progressive' is a less common type of MS in which a person only experiences worsening symptoms from the onset, rather than having the initial 'relapsing-remitting' stage. READ MORE: Davina McCall says 'horrible' ordeal felt like 'Alzheimer's' after brain surgery If you suspect you have symptoms of MS, it's important to seek GP advice. There is no single tool to diagnose the condition, but a medical professional may conduct MRI scans, blood tests, and take spinal fluid samples to better understand your problem. NHS guidance explains: "There is currently no cure for multiple sclerosis (MS). But there are treatments that can slow the progression of MS and help ease symptoms. "The type of treatment will depend on the type of MS you have and your symptoms. You'll probably need different treatments over time. You'll be supported by different healthcare professionals. "This may include a specialist MS nurse, a neurologist (brain and nerve specialist), physiotherapist and occupational therapist." Despite this advice, anyone who suddenly experiences balance issues, weakness or numbness in one arm, or blurred vision is urged to call 999. These may be signs of a stroke - a medical emergency that requires immediate attention.
CTV News
26-05-2025
- Health
- CTV News
Windsor's MS Walk raises $25,000
Around $25,000 was raised at Windsor's MS Walk over the weekend. Windsor's MS Walk took place over the weekend, raising $25,000, all donated to the MS Society of Canada. Around 100 walkers made the trek at Riverside Sportsmen's Club in support of the disease. Across Canada, 50 walks took place, raising $4 million.
Channel 4
23-05-2025
- Health
- Channel 4
Progressive MS patients given new hope in world first drug trial
Living the high life – management consultant Brad Johnson was working long hours, travelling all over the world, having the best time. Now he leaves his flat – in his words – under exceptional circumstances. 'I get very tired, I have to plan when I'm going, and it takes quite a lot, actually, to get me out the house, so it has to be a great event, or something, for me to leave,' he said. Eight years ago at just 30 years old, Brad was diagnosed with primary progressive multiple sclerosis. It is a form of MS where the symptoms gradually worsen – without remission. 'My friends said you should go to a doctor because you complain your legs are feeling heavy, you're not walking very far. 'There were a few odd things, like getting turned away from a department store, always seeming like the drunkest person at a party, that kind of thing. So I went to a doctor and my GP immediately said, 'Just stand still in a room, and close your eyes.' I was shaking all over the place.' The cruelty for Brad is there are almost no treatments for the more than 75,000 people in the UK affected by progressive MS. 'I get very tired, I have to plan when I'm going, and it takes quite a lot, actually, to get me out the house so it has to be a great event, or something, for me to leave.' – Brad Johnson But now there is the world first Octopus trial – comparing several potential treatments with a placebo. If they don't work they can slot in other drugs – multi-armed and multi-staged is how it is described. Prof Jeremy Chataway, consultant neurologist at the National Hospital for Neurology and Neurosurgery in London, who is leading the trial, said it works by putting patients on two already available drugs and a placebo. They will have an MRI scan and at that point they will carry on recruiting for the trial. After about a year, they will look at an MRI scan of their brain and decide whether to carry on with all the medications or whether to drop some. That is the multi-stage. The multi-arm is the point at which they can then look at adding in new medications. In MS, the protective coating around the nerve is stripped away. In this trial, patients are being given metformin, used in diabetes, which may help regeneration, and lipoic acid, to control inflammation. This sort of trial has been used for cancer treatments and in Covid. It is faster – they are not developing a drug from the start. The MS Society is raising money through the Stop MS Campaign to fund the trial. Dr Emma Gray, head of clinical trials at the MS Society, said: 'We have had a huge revolution of treatment with people with the relapsing MS, with 20-plus treatments now available. 'Some are better than others, there are some side effects of course, but what is still to crack, and why we need this campaign, is to find treatments for those tens of thousands of people that have progressive MS, and to stop it getting worse.' Brad Johnson was one of the first recruits to the trial – he doesn't know what he is taking or whether it is working. But the trial, he said, gives him and others at least some hope. Genetics behind multiple sclerosis, new study claims Stem cells to be used in major MS trial What is dementia? The key questions
Yahoo
23-05-2025
- Health
- Yahoo
'My boss called me a pain for having MS. We are not the issue'
The government is being urged to rethink its welfare reform plans as another charity warns disabled people will be pushed out of work if the plans go forward. Margaret Martin, 58, who has multiple sclerosis, has told Yahoo News that she was shut out of work because of the inflexibility and lack of understanding from her employer, with the company often mixing up her symptoms with someone who has ME. While Martin found suitable part-time employment later on in life — which allowed her to work from home and set her own hours — the role was cut due to budget cuts, leaving her once again at the mercy of a rigid jobs market. The government's plans to cut PIP by changing the threshold claimants need to meet to receive support may significantly affect people with MS's ability to work, with more than half of those surveyed by the MS Society (55%) receiving PIP. Of those surveyed, 41% receive PIP while in work, allowing them to cover the extra costs of living with a disability and work a more flexible role while supporting their disability. Half of MS sufferers in the UK say they have compromised their health by staying in a job that did not meet their MS needs, according to new research released by the MS Society. Martin and the charity warn that if deeper cuts are made, those receiving support could be shut out of the workforce, making it even harder for people with MS to be adequately supported to stay in work. The MS Society is among the charities that have warned the government that cutting PIP could hinder, rather than boost, employment levels among disabled people, who rely on the support to come with the price tag of living with a disability. Ross Barrett, policy manager at the MS Society, said: 'We're calling on the government to rethink and reverse their proposed welfare cuts, and focus on conducting a full review of PIP and the wider social security system so it better supports people with MS in and out of work.' Martin, who worked in customer service for a car leasing company, faced numerous struggles at work after her MS diagnosis — with staff routinely confusing her condition with ME and telling her to "power through" her illness. The 58-year-old, who was diagnosed in 2013, worked for the company for 17 years before she applied for medical retirement in 2018. She now claims PIP to support her mobility and daily living needs. "The longer I worked there, the more I felt my soul was being sucked out of me because everything was such a struggle and my employers did nothing to make it any easier for me," Martin told Yahoo News. Martin experiences a number of issues caused by MS, including pervasive brain fog, vision issues and unpredictable levels of fatigue. "MS is just the pits. You can wake up one day feeling fine, you go downstairs have your breakfast and then feel like, 'Oh my God i've got to go back to bed.' It is that bad," Martin told Yahoo News. "It's unpredictable, it's horrible, and it makes you feel like a shadow of your former self." Shortly after she found out she had MS, Martin spoke to her boss and shared her diagnosis. "At that time, I had no idea how MS and the Equality Act would affect me, as well as the fact that MS is a protected characteristic," Martin said. "I was then moved around a bit. Years later, when I told a new manager that I had it, he said 'Oh my God, I am so, so sorry. That is so hard. My sister's got MS and she struggles.' Before that, there was no support really. "I had colleagues who were undergoing horrendous cancer treatment, they had devastating diagnoses of cancer. Everybody was rightly so kind to them. "I thought, I've got MS, it's something that i'm never gonna recover from, I've got permanent damage within my brain and yet nobody understood. It's really isolating." When Martin's condition worsened, she asked for some reasonable adjustments. However, she says her requests were refused. She said: "I asked to work from home and have a parking space at the front. It was a massive car park, and by the time I drove into work and parked up, I was exhausted before the day had started." As Martin has a weakened immune system due to the MS, illnesses like colds and flu can take weeks — even months — to recover from. But the HR department didn't seem to understand why she had to take time off. "I still remember one of the heads of HR telling me to 'power through' my illness," she said. "They knew so little about it. They mixed up MS with ME. And no matter how much I tried to tell them the two things are completely different, they just didn't get it," she said. It then got to the point where Martin had been put through enough. "I woke up one Monday morning and I thought, oh, I've got burning sensation on my arms. It got worse during the day. I spoke to my manager and I said: 'I think I've got shingles'. "He said: 'Okay, well, do you know what? You're a pain in the arse. I'll see you soon.'" "That was the last time my manager had a conversation with me face-to-face. I think he probably meant it as a joke, but that's not a very nice thing to say to anyone," she added. Martin ended up being medically retired aged 50, in 2018. Now, she is calling for reasonable adjustments to be provided as a bare minimum for disabled workers. "Reasonable adjustments should be provided for people with disabilities because we're not stupid, we're not lazy, we're not idle. We're just wired up a bit differently to so-called 'normal' people," she said. "But we have huge skills. We are fantastic problem solvers because every day problems come our way. We have to resolve problems in order for us to live our lives." Martin, who was awarded both the daily living and mobility elements of PIP, said she has written to her MP warning of the dangers of removing PIP from disabled people who need it — whether they are in or out of work. "For MS, when you're diagnosed with MS, it should be an immediate award of PIP support. That way, the pressure is taken off you," she said. "We've all developed a disability through no fault of our own. We're not scroungers, we're not idle," she said. "I was fit, I was healthy, I ate sensibly. And yet this happened. I've known people who have been diagnosed with cancer and other awful things, and it's nothing to do with the way we've lived our lives. "We've been valid and capable members of the workforce prior to these cataclysmic events happening to us. And the narrative needs to change," she added. A DWP spokesperson said: 'We will never compromise on protecting people who need our support. 'Our reforms will put the welfare system on a more sustainable footing, so the safety net will always be there for those who need it most. 'We have also announced a review of the PIP assessment, and we will be working with disabled people and key organisations representing them to consider how best to do this as we deliver on our Plan for Change.'
