I have been living with multiple sclerosis (MS) for thirty-five years. In 2014 I noticed that walking was becoming more difficult and my MS nurse recommended that I contacted Josephs Court, MS-UK’s wellness centre in Colchester, Essex. I attended twice a week to exercise and became a founding member of their Steering Group. Before I was diagnosed with MS, I exercised every weekday walking for 10-15 minutes to the office where I worked in London. At lunchtime I would occasionally go for a 30 minute walk if the weather was kind, and this felt like it was a sufficient form of exercise. However I was unfortunately diagnosed with MS, but nevertheless I continued exercising in the same way for another 13 years until I eventually changed jobs in 1996. By then I commuted to Basildon by car – therefore my exercise regime came to an end.
But now, I visit Josephs Court two mornings a week, for 2-3 hours each time, and use most of the equipment available. I’ve also increased my exercise since the arrival of the latest university students, as one of them has given me some rigorous exercises using the parallel bars.
Now I feel that doing gentle exercise gives me a feeling of “getting one over on my MS” – it isn’t going to stop me from doing something that I enjoy, and there is a social aspect too. We are all suffering with the same disease label yet we don’t talk about it, we just enjoy one another’s company. The social aspect means I now have someone else to talk to, and shows that I needed something to relieve the boredom of not working, as I spent three years applying for jobs with no luck.
Finally, I thoroughly enjoying working with the student physiotherapist Becca, as she has brought new ways of exercising to me. I also find volunteering for MS-UK therapeutic – it is another reason for existing and gives me purpose.
'In 2016, I was diagnosed with progressive multiple sclerosis (MS) and decided to find out more about MS-UK’s wellness centre, Josephs Court, especially when it really began to affect my balance. I visited weekly and have found the welcoming atmosphere really helpful to me, especially with things such as discussing treatments, and getting ideas and tips for coping.
'Before my diagnosis, I played table tennis to county level as an under 17 and took qualifications to become a swimming teacher. In my youth, I even became a lifeguard with the Guildford Lifeguards. Many years later I joined a gym with my middle daughter Naomi, and we used to go several times a week.
'Alongside this, we also used to cycle to the school I was teaching in and where Naomi was also a teaching assistant. It really was downhill all the way to school, but uphill all the way back. Naomi was able to cycle all the way home, but I had to walk and push my bike for some of the way. Then in 2007, I moved to Great Totham so cycling to work was no longer an option, just an 80 mile round trip to school and back.
'After diagnosis however, my exercise regime was affected, and I didn’t think that exercise would work for me as it used to. My balance was going and I could no longer ride my bike as a result. I even tried stabilisers, but I continued falling off. Subsequently, I started going to Josephs Court and at first, I couldn’t really see the point of it. I could still walk even though my balance was shaky. However, I kept going and then soon realised just how much I needed what Josephs Court could offer and help me with.
'Following this, I ordered an adult tricycle, and was amazed when I was able to get on and ride it straight away, albeit not very far to begin with. But now two and a half years later, I’m able to ride 4.5 miles most days around my home village of Roxwell. I sometimes book myself in for a six week course of hydrotherapy. I think the feeling of being able to walk across the pool with no sticks or rollator is amazing.
'Because of what services there are for those diagnosed with MS, I can’t value exercise highly enough. I have always been competitive, so Josephs Court and tricycling gave me this challenge.'
Next week will mark MS Awareness Week 2019. This year we’re very excited to be working alongside the MS Trust and the National MS Therapy Centres to raise awareness of the benefits of exercise.
We have developed a free booklet all about exercise which includes some seated exercises to help you get started. We hope you find this useful and it includes first-hand quotes from other people who have been in your position - people who can truly understand and empathise with your feelings about exercise.
The MS-UK Helpline team
Today we have launched a new video all about our plans for the next three years. At MS-UK, we want to be truly community-led and we have developed our next strategy with this in mind.
Way back in February 2018 the whole charity agreed that we wanted to involve people affected by multiple sclerosis (MS) in a meaningful way. We were really keen to make sure we didn't just tick boxes, we wanted people affected by MS to share their insights and experiences with us and help us develop a way forward that makes a difference where it's needed most.
We asked the MS community 'what is the biggest difference we could make for you today?' And you answered...through attending focus groups, joining our Virtual Insight Panel, completing surveys and sending emails, you let us know what matters to you.
So, what are our priorities for the next three years? Watch or listen to our film today to find out!
You can also read our Strategic Plan for more information.
I am very excited about planning for a healthier and happier future, a future where we can improve understanding of MS and provide the support that is needed most. Thank you so much for all of your feedback over the past year, you have made this possible,
Today is National Non-Smoking Day. Have you ever wondered how smoking can affect multiple sclerosis (MS)? Do you need help quitting? Read on...
Research has shown that the risk of developing MS is three times greater in male smokers compared to male non-smokers, and for women the risk is one and a half times greater. It is thought that smoking may damage the cells which line blood vessels and these damaged cells cause the vessels to leak, allowing the toxic chemicals in cigarette smoke to damage the brain.
In a study researchers found current or former smokers with relapsing remitting MS were three times more likely to develop secondary progressive MS, another phase of MS marked by a steady increase in MS symptoms and disability, compared to non- or past smokers. However, quitting smoking is something that has been shown to slow disability progression.
A study revealed that 62% of the people diagnosed with MS had been exposed to parental smoking as children, compared to 45% of people diagnosed with MS, whose parents did not smoke. The research also pointed to a time-related correlation between the increase in risk of developing MS as an adult and the length of time a child had been exposed to passive smoking.
For people taking the disease modifying drug Tysabri (natalizumab), there is evidence that smoking increases the risk of the body developing neutralising antibodies to the therapy, causing the drug to have little or no therapeutic effect. A study revealed the risk for developing neutralising antibodies was over twice as high in smokers, compared to non-smokers.
Although stress is a well-known MS trigger and it can exacerbate symptoms, smoking does not have therapeutic benefits. Research has shown that people who smoke actually have higher stress levels than those who don’t.
If you need help quitting smoking visit:
2016 and 2017 was a momentous time for supermarkets here in the UK; ASDA, Sainsburys, Tesco, Waitrose and Morrisons announced they had removed the stigma of people with invisible illnesses from being called out for looking ‘normal’ when using their stores.
In an act of moving with the times, when the big five supermarkets specifically addressed the issue of hidden disabilities by displaying ‘not every disability is visible’ signs in their stores, I was greatly heartened to hear about this act of awareness.
And not a moment too soon. After all, from a personal perspective having to validate my MS to complete strangers has at times been humiliating, particularly whenever I’ve found a disabled parking space.
While not exactly a burning bush moment, by raising an awareness on their premises it was a positive step against discrimination. But then again, was it really something to celebrate or was it nothing more than a misguided publicity stunt?
Despite the desperate need for a parking space hidden disability awareness sign, shamefully I later discovered it was only Sainsburys who have displayed it beneath the wheelchair logo in their parking bays. As for the others, their nod towards helping people only extends as far as their accessible toilets.
Without wishing to sound ungrateful I’m at a loss to understand why both needs were not given equal consideration but then again, I have nothing to be grateful for. None of us do. Yet given all the free PR and advertising, the cynic in me questions what kind of tokenism was deemed more acceptable by supermarket focus groups.
If ASDA, Tesco, Waitrose and Morrisons can put up signs in their store toilets raising awareness of 'hidden disabilities' that doesn’t extend to parking, they clearly have no idea what going shopping is like for some with MS, faced with fear of confrontation outside on the superstore concourse.
Never more has supermarket lip service been so opportunist. They should be shamed, not celebrated, for their penny-pinching attempt for basking in gold-plated publicity. I can only assume they chose to do this because of cost. And yet all is not lost. Redemption is at their fingertips.
On Amazon, it’s possible to buy ‘not all disabilities are visible stickers’ to give away free to customers. The cost to them is less than £2 notwithstanding discount for a bulk order.
Every little helps, as they say.
If you would like any information about accessibility or parking, please email our helpline with your questions.
It’s World Mental Health Day, an annual day to highlight the importance of looking after your mental wellbeing that is recognised by the World Health Organisation.
To recognise the day, the Prime Minister Theresa May has appointed a minister for suicide prevention. Jackie Doyle-Price will add this to her role as Health Minister to help tackle the stigma surrounding suicide.
Here at MS-UK, we have been told that when it comes to living with multiple sclerosis (MS) the mind is often overlooked. That’s why this time last year we launched MS-UK Counselling, a confidential telephone counselling service for people with a diagnosis of MS.
I wanted to let you know a bit more about it, as it is World Mental Health Day. The only service of its kind, MS-UK Counselling is focused on helping people with MS explore the emotional impact of living with this condition.
It is very common for people to struggle with coming to terms with a diagnosis or dealing with the uncertainty of how their condition may progress. For some, MS-specific counselling is crucial in supporting them to come to terms with their condition, understand their feelings and live positively with MS.
So if you are thinking about your mental health today with all the media attention on World Mental Health Day, do visit our web page to find out more about MS-UK Counselling. Our team of counsellors are here to help and support you,
Head of Services
Today marks the end of Volunteers' Week 2018, and what a week it has been!
To celebrate the week we created a series of short films starring some of our fantastic supporters, like Emma...
You can watch all of the films today on our YouTube channel.
If you have been inspired by Volunteers' Week, do explore our current opportunities to get involved...whether you prefer being behind the scenes or up front cheering at a national event, we have something for you!
World MS Day proved to be a day to remember, with the grand unveiling of our New Pathways video and our special social media Q&A. We also got the chance to speak to a few of the MS community to find out how complementary therapies and research has had an impact on their lives.
I have officially had MS for 8 years, but I experienced symptoms 8 years before that.
Just over 3 years ago, I responded to a request for people to get involved with a new group in our village. The request was put in by a professional aromatherapist who volunteered at Cancer Care. She believed that all people with any chronic condition needed support and access to therapies. She also felt that it was important that therapies should be available locally because there was a lack of facilities in the village.
To cut a long story short, 3 years on I am secretary and 'meeter and greeter' for a growing group that has become really important to those who attend. People drop in for coffee and a chat, and to support each other - there’s no need to put on a brave face! In the group there are professional therapists offering therapies such as reiki, reflexology, Indian head massage and shoulder and back massage - all available for a donation if people wish or can afford to give. There is also trained counsellor available for when life is difficult and a listening therapy is needed. The counsellor is also trained in mindfulness and has run courses. I have attended one myself and found them very helpful.
I can certainly vouch for the benefit of these therapies for me - especially Indian head massage and reiki! I’m not alone - there are others with MS who agree. A friend of mine who was recently bereaved attended a meeting with me and her verdict was "a group like this should be available everywhere!"
Volunteering at the group, as well as benefitting from the therapies, makes the name of the group - Best Life - very apt! It certainly makes it possible for me to live the best life possible with MS.
World MS Day is one of our favourite dates in calendar. It's a time when people around the globe - whether they're doctors, MS nurses, students, or those living with MS - can come together and talk about multiple sclerosis (MS).
For 2018, under the banner #BringingUsCloser, the World MS Day campaign on 30 May is putting MS research underneath the spotlight.
Here's what we'll be doing on the run up to and on the day so you can get involved in the action...
For one day only, Sarah-Jane, the editor of our New Pathways magazine, will be taking over Twitter for a very special Q and A! If you have any burning questions you need to get off your chest - whether it's about recent medical developments in the world of MS, MS studies or research, or complementary therapies - then join us on Twitter on 30 May and make sure to tag us @MSUK6.
Gather around the (digital) campfire! We want to hear stories of your experiences with complementary therapies and MS research. Has cannabis helped ease your symptoms? Do you follow a diet that you'd love to recommend? Perhaps you were involved in a research trial and want to share what you've learned with the world? Let us know! Email Callum with your tales and we'll feature you in our special World MS Day blog!
We've planned a series of special blogs to coincide with World MS Day 2018! Throughout the week and on the day itself, we'll be posting about the latest developments in MS research and showing you how to get involved. Keep your eyes peeled on the MS-UK blog pages so you don't miss out!
Armed with a camera and supported by a rising actress/willing member of the MS-UK team, we've channeled our inner Spielberg to create a one-off World MS Day video! Production is currently under tight-wraps (so no spoilers) but we can't wait to show you the finished product!