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Fundraiser of the Month - Sharon Asher

Posted on: May 20 2019

2019 - Blog Banners (3).png

Congratulations to Sharon Asher who is this May's Fundraiser of the Month! Back in September, Sharon travelled to Scotland to cycle the slopes around the shores of the famous Loch Ness in aid of MS-UK. We caught up with her recently so she could tell us what it was like to take on a gruelling 65-mile cycle race with no previous cycling experience...

I signed up to the Etape Loch Ness cycle event last September. A close friend had decided that we would become the 'Invernairne Try Team', a team of four who would undertake challenges to test ourselves and keep fit. The initial plan was to try a triathlon, but somehow we ended up entering the Etape Loch Ness, a 65-mile cycle event that starts and finishes in Inverness, and which takes 5,600 cyclists around Loch Ness, offering spectacular views and scenery alongside some physically and mentally challenging climbs. I decided that if I was going to attempt it, I should try to raise money for a charitable cause and I chose MS-UK. Thankfully, deciding to ride for a cause kept me going to the finish line.  

My mother was diagnosed with multiple sclerosis (MS) in 1973 when I was ten years old. Back then there was little in the way of help and support and life wasn’t easy for my mum or us as a family. Sadly my brother has recently been diagnosed with MS but hopefully, with advances in research, medication, therapy, and support, his experience will be a lot more positive. I also think that by fundraising it has brought awareness to the fact that my brother has the condition and recognition of the issues faced by those diagnosed with what is often a misunderstood condition. 

I chose MS-UK because they support and encourage those with MS to continue to live life and challenge themselves. They also offer invaluable support through the MS-UK Helpline, MS-UK Counselling and the excellent magazine, New Pathways. I feel that if we previously had access to some of the services offered by MS-UK, life for us a family might have been a little easier.  

I think the biggest challenge was the fact that neither the rest of my team or I were experienced cyclists. We were all quite fit for our respective ages but most of our training over the winter had to be indoors, as with short days and icy mornings we couldn’t really get out on the bikes until March. We also had the challenge of the five-mile hill hanging over us, and all we could do was push ourselves on indoor bikes with no idea what lay in store. 

When we finally hit the road on the day, we had survived a few crashes and miscommunications, learned how to change a bike tyre, and stocked up with jelly beans to keep us going, but the furthest we had cycled was 40 miles. Thankfully the weather was kind and we all managed to complete it without any disasters. My indoor training really paid off and I am delighted to report that I finished in the middle of the pack and managed to stay on my bike up the five-mile climb. It was tough though and I was so relieved to hear the piper who welcomes riders to the top. Never has the sound of bagpipes been so welcome!

From then on it was almost all downhill, with a few nasty but shorter climbs thrown in to keep you focused. Thankfully the road home was dotted with fabulous volunteers - their encouragement was invaluable to seeing us all home. 

Would I do it again? Well, I did it enjoy it and I’ve registered interest for next year. I don’t have to make my mind up until September, but it would be a shame not to tackle it again with a bit more training and experience. However, having said that, we’ve still got a triathlon to attempt and as I’m a rubbish swimmer, the next challenge may have to be in the swimming pool. To be honest, I think I’d rather tackle that hill again! 

I have always felt that it is important to challenge yourself, and while I am fortunate to be fit and healthy enough to take on new challenges, I’ll continue to try new things. Hopefully, the money raised, with the help of MS-UK, will encourage those with MS to not give up, find ways to make the most of life and overcome their personal challenges. 

For fundraising, I used JustGiving, mainly because it makes it easy to share your page on social media and enables you to post updates to keep your donors informed. It also deals with Gift Aid, which added another £500 to my fund. Emailing the link to my friends and family and sharing updates on Facebook was invaluable. I also feel that it is essential to thank your donors personally and I took time to thank them individually on Facebook and by email if I had their email address. 

Do something different for MS-UK!

If you would like to try your hand at fundraising for MS-UK, contact Lucy on 01206 226 500, or email lucy@ms-uk.org.

A year in the life... Celebrating the stories of five MSers over coffee and cake

Posted on: May 20 2019

Over the past year we have been following the progress of five people affected by multiple sclerosis (MS) and capturing, in their own words, an insight into what it is like to live each day with the condition.

These eye-opening stories were recently published in our ‘A year in the life of…’ booklet, a project designed to explore the real-life experiences of MS through topics such as independence, mental health and physical wellbeing and to show how the funding from the National Lottery Community Fund has had a positive impact on the work of our Josephs Court wellness centre.

To celebrate the publication of this booklet, we were recently visited by Jess Leonard, Funding Officer of the National Lottery Community Fund, who met the incredible people behind the case study over coffee and a slice or two of cake.

Diana Crowe, Head of Services said, ‘It was great for our clients who participated in our case study project to meet Jess.

‘It gave them an opportunity to discuss how much they have enjoyed writing for MS-UK and reflecting on their own experiences.

‘Jess really enjoyed the afternoon meeting some of those who were benefiting from the funding awarded to MS-UK’s Josephs Court.’

From Diana and Dean, and the rest of the MS-UK team, we want to thank Jess for visiting us last week.

Bank holiday closing times

Posted on: May 20 2019

Hi everyone,

MS-UK will be closed on the bank holiday following this weekend, so just to remind you of the times:

Friday 24 May - open from 9am - 5pm

Monday 27 May - closed

This includes the MS-UK Helpline. If you would like to leave a message for our helpline team over the weekend, please email us, and we will respond when we get back on Tuesday.

Thank you all and do have a lovely bank holiday!

Best wishes, The MS-UK team

Wow - thank you Colchester Half Marathon 2019!

Posted on: May 20 2019

On Sunday March 23, more than four thousand people took to the streets of Colchester to be part of the towns’ biggest community sporting event the year, the Colchester Half Marathon.

The event is organised by a group of volunteers from Colchester Colne Round Table who work tirelessly throughout the year to stage this fantastic event. All the proceeds from the race are shared between local charities. 

This year MS-UK were lucky enough to have been chosen as the main charity beneficiary for the event. Brain injury charity Headway Essex were the other charity partners. MS-UK worked closely with the organisers and recruited a team of over 100 volunteers and 50 runners to support the event.

Taking on a half marathon is brave enough, but not enough of a challenge for MS-UK’s long term supporter Clare Thompson and her running buddy Dave, who completed the course wearing an MS-UK branded purple tyre!

It was a great day, everyone had loads of fun and the Great British weather was exceptionally kind to us too.

This week MS-UK received a very handsome donation of £48,750 from the event. Jill Purcell, MS-UK’s Fundraising Manager said 'We are delighted to receive such a fantastic sum of money raised from the event. The amount is equivalent to MS-UK being able to provide specialised supervised exercise sessions to more than 50 clients for a whole year at Josephs Court, our wellness centre in Colchester. Thank you to the Colchester Half Marathon committee, and all runners and volunteers for their generous support. It is always a great event which significantly benefits the local community too'.

Every penny raised from the Colchester Half Marathon helps MS-UK support even more people affected by multiple sclerosis (MS), by raising awareness of the condition and offering services like our helpline, MS-UK Counselling and New Pathways magazine.

Thank you so much to all involved and our amazing #TeamPurple runners!

Inspired? Get in touch with our fundraising team today!

MS and guilt

Posted on: May 15 2019

Annabel Nicklin.jpgMS-UK counsellor Annabel Nicklin discusses how MS can cause feelings of guilt

This week, 13-19 May, is Mental Health Awareness week. People affected by MS can often experience associating effects on their mental health too. Sometimes it can be difficult to understand what somebody means when they talk about mental health issues, and this is why Mental Health Awareness week exists. They aim to make discussions of mental health clearer and a foundation stronger support networks. By supporting Mental Health Awareness week, we can pave the way for greater openness when it comes to mental health, and strive to help those that are further affected by other conditions too.

We can all experience guilt, like any other emotion within our daily lives. Some people experience it occasionally, whilst others may experience it more frequently. Guilt can be a difficult emotion to identify and can often be disguised by feelings of anger or resentment. The feeling can often rear its head when we identify and perceive we have caused ourselves or somebody else a wrongdoing or harm. Guilt can leave us feeling pretty rubbish!

People living with a long-term health condition can experience the grieving process, which is not linked to the death of a loved one. Guilt can be a part of the grieving process where the person is seeking to try and find the answers to their questions of why something is happening to them and the impact that has on others.

People living with MS may experience this feeling for a number of reasons, some of which are discussed below

  • Letting their family, friends and colleagues down by being diagnosed with MS
  • Their MS has put additional burdens on their family life; for example through a change of lifestyle or reduced household income
  • Needing to reduce work hours, socialising, attendance at special occasions and hobbies
  • A need to now rely on others in a way they didn’t before
  • Feel personally responsible for developing MS because they didn’t exercise enough, eat healthily enough or go to their GP early enough. Or wish they had fought harder to be heard by health professionals
  • Being punished for something they feel they did wrong towards somebody else
  • Family members may also experience guilt as they may not feel they’re ‘caring enough’ or that they don’t have enough patience or compassion towards the person living with MS. Or they may blame the person for the challenges presented which can provoke guilt in the person living with MS

Most people will experience feelings of guilt at some point in their life. However, if you notice that you are constantly apologising to yourself or others this could be a telling sign that you may be experiencing feelings of guilt. Communication is key to challenging these feelings. Communicating with somebody you trust such as a family member, friend, colleague or health professional can help you to start alleviating these feelings.

If we do not recognise and process feelings of guilt this can potentially affect our mental health and wellbeing. Sometimes people may want to talk with an experienced mental health professional about their feelings of guilt in a safe, supportive and non-judgemental setting. This could be through:

Counselling or Cognitive Behavioural Therapy (CBT)

This can provide space for the person to explore and examine their thoughts and feelings. Counselling can help the person identify new ways of thinking and behaving which can improve the way they feel. 

Relationship or family therapy

The whole family may want to access counselling. This may help family members understand when it might be MS that they perceive to be the ‘problem’ or ‘worry’ and when it is something else.

Mindfulness and meditation

Can help the person to be aware of the present moment where they can calmly recognise and accept their thoughts, feelings and bodily sensations without judgement. This can be a very powerful tool in helping to alleviate feelings of guilt.

You may have read this article and relate to some of what was shared. Others may be thinking that it isn’t relevant at all. As individuals we respond differently to feelings of guilt but what is important to remember is that one of the best ways to cope with feelings of guilt is to try and be as compassionate towards yourself as you would be to somebody else.

This extract was taken from issue 113 of New Pathways magazine, the MS magazine for people with MS, by people with MS.

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Veggie Comfort Food

Posted on: May 14 2019

BUTTERNUT MAC'N'CHEESE picture.jpgThis week is National Vegetarian Week, and whether you’re a veggie looking to give something new a go or completely new to vegetarian eating, we have a simple but scrumptious recipe for you to try! We present you with…

Butternut Mac & Cheese, a recipe featured from MOB Kitchen: Feed 4 or more for under £10, by Ben Lebus, published by Pavilion Books. The veggie version of this book, MOB Veggie, is going to be realeased on 4 July 2019.

‘The creamiest mac ‘n’ cheese in the land. Butternut squash brings the sweetness. This is an absolute worldy of an M’N’C!’

Serves 4, 45 minutes preparation and cooking time.

 

Ingredients

  • 1 Butternut squash
  • Olive oil
  • 560 ml (1 pint) whole milk                                                                                               © HaaralaHamilton
  • Plain (all-purpose) flour
  • Dijon mustard
  • 500 g (1 lb/2 oz) macaroni
  • Cheddar cheese
  • Parmesan cheese
  • Fresh sage
  • Fresh rosemary
  • Salt and pepper

 

Method

  1. Preheat the oven to 180°C fan (200°C/400°F/Gas Mark 6).
  2. Peel a butternut squash and cut it into cubes. Place in a roasting pan. Drizzle with olive oil, season with salt and pepper, and roast in the hot oven for 25 minutes (until soft, not browning though).
  3. When the butternut is ready, take two-thirds of it and add to a blender. Pour the milk into the blender too, and blitz until smooth.
  4. Place a large saucepan on the heat. Add 4 tablespoons of olive oil and 1½ tablespoons of flour. Whisk it together until the flour is absorbed by the oil. At this point, start gradually adding your blended butternut mix, whisking constantly. Once mixed in, add 2 teaspoons of Dijon mustard.
  5. Get the macaroni on a separate pan (following the instructions on the packet).
  6. Time to grate your cheese. Finely grate 300 g (10½ oz) of Cheddar and 200 g (7 oz) of Parmesan.
  7. Into the butternut sauce, add 3 chopped sage leaves and a small handful of chopped rosemary. Mix them in. Then chuck in the remaining one-third of the roasted cubed butternut.
  8. Drain your macaroni, and then add it to the butternut squash pan. Mix it all together. Cheese time. Add the cheese, but save enough to sprinkle over the macaroni before going in the oven.
  9. Fold the cheese in. Once it has melted, remove the pan from the heat. Pour the macaroni into a baking dish. Sprinkle your leftover cheese on top. Add some sage and rosemary leaves, and a drizzle of olive oil.
  10. Place under the grill (broiler) for 3–4 minutes, keeping an eye on it so the cheese doesn’t burn.
  11. When the cheese is nicely browned, remove the dish from the grill. Dole up and tuck in! Enjoy, mob!

We would like your thoughts on loneliness and isolation...

Posted on: May 09 2019

Hello,Photo of Diana from MS-UK

I wanted to invite you to complete our survey which launched today about loneliness and isolation.

Last year we consulted with the MS community to inform the development of our new strategy. The most talked about gap for people affected by multiple sclerosis (MS) across the UK was appropriate support to tackle loneliness and isolation. We were told that there was simply not enough support to overcome the barriers contributing toward their isolation and not enough available to help them feel a part of something, connected to the world and less lonely.

We are now beginning to look at this area and we would like to understand this issue a bit more. The voices of people affected by multiple sclerosis inform all our work and this insight is incredibly valuable as it brings us perspectives that no one else can give. I hope you will take five minutes to complete this short survey and help us stay on course to provide people affected by MS not only with what they want from us, but crucially, how they want it. 

Take the survey online today

The topics of loneliness and isolation can be difficult to deal with at times, so if you would like any support at all please get in touch with our helpline. You can email the helpline, call us on 0800 783 0518 or connect with us online.

Thank you so much for your contribution, 

Best wishes,

Diana

Head of Services

Volunteer Counsellor opportunity...

Posted on: May 01 2019

Hello,MS-UK Counselling volunteers graphic

I wanted to let you know about a new volunteering opportunity here at MS-UK.

We are looking for Volunteer Counsellors to join our team to provide telephone counselling sessions to those affected by multiple sclerosis. If you have experience of delivering person centred and telephone counselling please get in touch. The role is based at our office in Colchester and full training will be provided on 28 and 29 May 2019.

You can find out all about this opportunity on our volunteering web page, and the closing date is 10 May. 

MS-UK Counselling is the only service of its kind available to people diagnosed with multiple sclerosis in the UK, so you will be joining a dedicated team that really makes a difference.

Best wishes,

Sarah

General Manager

Find out more today

Ready to run? The marathon ballot is open!

Posted on: May 01 2019

Photo of MS-UK marathon runnerHello,

We can't quite believe it but we have just seen another Virgin Money London Marathon take place and it was amazing to see so many #TeamPurple runners taking on the challenge in aid of MS-UK! Thank you to every single person who made the day so special. 

Now we're looking to next year and the date has been announced - 26 April 2020! The ballot for the Virgin Money London Marathon is now open, so visit the website to register today! It will close this Friday at 5pm, 03 May. 

Register for the ballot

Good luck everyone!

Jill

Fundraising Manager

Guest blog: 'If at first you don’t succeed, try and try again!'

Posted on: April 27 2019

Photo of SarahIn this final guest blog of MS Awareness Week, Sarah tells us all about overcoming her fears and discovering she could still exercise following a diagnosis of multiple sclerosis...

'Before I was diagnosed with multiple sclerosis (MS), I was very keen on sport and was always very active participating in sports teams, such as when I joined Colchester Ladies Hockey Club and later on, a Colchester badminton team. I also started playing golf in my mid-thirties and was a very active gardener as I got older.

'However, pre-diagnosis, I had an unexplained ‘attack’ which left me very fatigued with a tendency to quickly hit a ‘fatigue wall’ during any physical exercise, even just walking to the shop. This meant that my very active lifestyle came to something of an abrupt end, even though my mind still thought of myself as fit and active. Suddenly, I just couldn’t do the things that I used to do. Despite my mind telling my legs to run, jump or whatever, my muscles just weren’t able to comply. The messages from my brain just weren’t getting through. It was a very scary time and I began to get scared of trying to carry on doing any physical activity.

'I remember one time when I was still just able to trot a bit and I was walking across a field to our campervan, and it began to rain. I started to ‘run’ towards the van for shelter and took a big tumble which twisted my ankle, wrenched my back and gave me big bruises and muddy clothes. Luckily, I’d fallen on grass but as I’d not fallen over since I was a toddler according to my Mum, it gave me a big shock! This episode really dented my confidence and my physical activity reduced considerably after that.

'Once I received my MS diagnosis, I was overwhelmed by so many fears, worries and confusion. I found it difficult to take in and understand all the advice and information I was given. I didn’t ask about physical exercise or about many other things related to MS because I didn’t know enough to know what to ask, my mind was in a spin. All I remember was being told that ‘overdoing it’ could bring on a relapse, and to rest and pace myself or I would ‘pay for it’. This made me very worried about doing any physical exercise in case it brought on a relapse.

'After my diagnosis, I now exercise twice a week at MS-UK’s wellness centre Josephs Court on a Therabike and on the Vibeplate. I joined Josephs Court two years ago and have been aiming to strengthen my arm and leg muscles to help compensate for my severe fatigue and to reduce the risk of falls. I’m really pleased with my progress and I’m now able to do a lot more than I was able to do before I hit my ‘fatigue wall’. I’ve also learned how to pace myself better through the excellent coaching at Josephs Court and the MS-UK Mindfulness training.

'I now appreciate doing the exercise as it enables me to garden regularly, as long as I’m strict with my pacing! Now I have four grandchildren under the age of four and another on the way, and I have begun to feel that I would be missing out on enjoying family time together, but my increasing fitness and activity has meant that while I still find it very tiring to play with the three year olds, alongside looking after the one year old twins, I’ve been able to find ways to cope with them all and enjoy them without exhausting myself.

'I also have advice to those who are affected by MS and are nervous about exercising. I would say that I feel that good information is the key to living positively with MS. When I was first diagnosed 13 years ago, I didn’t ask questions. I was in denial for about 10 years before I finally plucked up the courage to go to Josephs Court. By then my fitness and strength had deteriorated massively impacting negatively on my general health and wellbeing, so I wish I had been able to ask the questions I needed to earlier in my diagnosis. I have found in the last two years that mental and physical wellbeing, with keeping yourself as fit and healthy as possible, are so important if you’re living with MS, or a similar chronic condition. When I started exercising at Josephs Court, I hit my fatigue wall almost immediately but with the help and encouragement of my Wellness Coach, Jay, I was able to slowly improve.

'Another benefit that I found with exercising is the social part of it. I loved meeting other clients, something I was very nervous about to start with. But chatting with other clients, comparing notes and encouraging others has been a lovely but unexpected bonus, and has really helped me look much more positively on myself with MS. Also, joining the social group and attending social events such as the regular coffee mornings, has been a very enjoyable revelation for me, and helps me to think so much more positively about MS.

'Finally, I find the exercising therapeutic, I feel really well after an exercise session – I am more relaxed and subsequently sleep better; and by the next morning my back and leg pain and spasticity are very much reduced. It improves my strength and stamina and increases my sense of wellbeing. Now, I can also enjoy time with my family and friends without constantly feeling exhausted. “I don’t feel ‘ill’ anymore!"'

Find out more about exercise in our Choices booklet (PDF document)

Find out more about MS Awareness Week

 

It’s time for the hair to go!

Posted on: April 26 2019

So in today’s blog I’m going to talk about something a little more serious and the topic is dealing with my hair falling out due to the chemotherapy.

 

At first I will say and as you can see from the video, it was a bit funny and humorous to me. But those are the magic words, “to me” and just me. The bigger picture is obviously that multiple sclerosis (MS) affects twice as many women as it does men, so for every one of me as a man, there are two women. As I was washing my hair this morning in the shower, there was a nice ring of my hair about my feet, which to be honest was something of a surprise and not a terribly pleasant experience. It did leave me with a curious feeling, thinking about other people that may not be approaching this in the same way that I am. I can see that a woman would be very proud of her hair, or a man for that matter, a lot of men can get uppity about losing their hair. Nature takes some men on a biological one-way trip and their hair just falls out anyway regardless of chemotherapy and that’s just life, there are plenty of strapping bald men out there.

I did actually feel my heart sink a little bit when I thought about people who are proud of their hair and spend a lot of money on it. It can define some people. This is not meant to sound like it’s a vanity thing because it just isn’t, but watching my hair falling out as I was washing it this morning left me with a small feeling of dread for myself. What if it doesn’t grow back? Which isn’t too bad, as I used to shave my head all the time anyway. But for those that don’t view this the same way as I do, it must be such a huge heavy heart sinking feeling. I can see how it might feel at this stage of the initial HSCT chemotherapy, almost like a point of no return, the hair is going to go. Writing this, it makes me feel more than a bit solemn when I think about the big picture and the many different people that this will involve.

One of the few things I can think of that may help in this situation is to have a good positive mental attitude. I don’t mean to sound patronising, but it can become such a strong powerful weapon to have in your little arsenal and that is what gets me through. Yeah, the hair is going right now, but just look to the future not so far away. You’re talking six months from now, which is a snap in our lifetimes really and isn’t really that long at all. We would have collectively come through the other side of the chemotherapy, and we shall be growing fresh new baby soft hair, colour back in our cheeks, a spring in our step and no MS.

Another positive view on this was one my wife brought up. She said this is my old MS hair and it’s been removed to make way for my new non-MS hair for the new non-MS me. It’s a very useful sentiment and one I will carry closely with me as I go through each stage of treatment.

No MS is what we need to focus on right here, right now as the collective, going through the chemotherapy to rid ourselves of the MS that we are all battling with. My eyes are firmly fixed on that, and as I have said before I want to run, probably not for the first few weeks or months, but I will run. We the collective MSers now have a way out of the previously never-ending inescapable tunnel that I personally could never see the end of. HSCT is a gift that few are blessed to receive, so losing our hair in the meantime is an insignificantly small price to pay for us to have our lives back, with or without limitations.

Scott has decided that he will shave his beloved beard off to raise money for MS-UK. Anyone who has been following his story will know how much his beard means to him, so if you would like to donate, visit his JustGiving page or Facebook fundraisier. 

If you’ve been effected by the topic discussed in this blog, please contact the MS-UK Hepline on 0800 783 0518.

Guest blog: 'I'm pretty convinced that if I didn't exercise I would have lost lots more function'

Posted on: April 26 2019

Photo of PhilIn this guest blog Phil, a MS-UK Trustee, tells us about exercising before and after a diagnosis of multiple sclerosis as part of MS Awareness Week...

'I was diagnosed with MS in the summer of 2007 and I quickly tried to find out more about it and what I could do. Of the various organisations offering advice, it was MS-UK (or MSRC as it was at the time) that I found most helpful and supportive. The pragmatic and un-blinkered information, the positive attitude of taking control of your own situation helped me through those first difficult few months, and that idea of taking control of your own health is still very much with me.

'Fortunately I then got the chance to join the Board of Trustees at MS-UK and it gave me a chance to use the skills I had developed in my management consulting career for an organisation that really was making a difference to people’s lives.

'Before I was diagnosed I was very physically active, despite a demanding job that took me to many places around the world. The mountains and mountaineering was my real passion, and as well as rock and ice climbing I ran and cycled. Ironically it was a friend seeing me stagger back from a day’s rock climbing that made me go to the doctor and started the process that led to my diagnosis.

'I have primary progressive MS and immediately after diagnosis my physical symptoms were pretty minor. But as my mobility worsened I couldn’t climb anymore, I kept falling over when running because of my foot drop, and tunnel vision when tired made road cycling too dangerous. Climbing was a big part of my life and not being able to do this felt like a huge loss to me. 

'So now 12 years after diagnosis with PPMS I do what I can when it comes to exercise and it’s still a big part of my life. I can’t run at all or walk far, so I have a rowing machine for cardiovascular exercise. I used to have a rowing club nearby that offered assisted rowing which was wonderful. I have a home gym where I can do resistance and strength work and have joined The MS Gym.

'I have seen the benefits of exercising personally and am certain it has allowed me to recover some lost ability. For a while my foot drop was pretty bad - all my right shoes had the familiar tell-tale scuff marks around the toe. But amazingly I found that by working on my right foot and leg I managed to nearly get rid of the foot drop – so now it’s only when I’m really tired that I have a problem. This helped convince me that although I might not be able to recover all the function I’ve lost, I may be able recover some function and must do what I can to maximise what I have. 

'I also have some advice to people affected by MS who are nervous about exercising. Exercise will not make your MS worse. Even if you feel exhausted or can’t even move immediately after exercising, you will recover. And it is fine to exercise to ‘failure’ and push your limits – just make sure you’re safe, be aware of form, and have time to recover. There are lots of stories from those with MS that have some functional recovery by exercising, including at basic levels of movement. Also brain loss as we age is much faster in those with MS and exercise slows this loss. However, it can be hard, especially with the fatigue and mobility issues. There is lots of help out there to start you on your exercising journey. Neuro physiotherapists can be incredibly helpful and your MS nurse or consultant might be able to refer you. Many gyms offer advice and training programmes, and there are assisted activities all over the UK. MS-UK and the MS Trust have general advice and more details on exercise programs.

'I also found that exercising with MS requires a huge amount of concentration and can be very tiring. It’s not just a case of “use it or lose it” because form is really important. When I exercise I’m also trying to create new neural pathways to overcome functional loss, so learning and practicing the right way to move is vital.

'Finally, I feel that exercising is therapeutic and I know that I have recovered some lost function through exercising. I’m convinced that if I didn’t exercise, I would have lost more function and exercise has helped me alter the trajectory of the condition. But I just enjoy doing it and feel so much better - even if I can’t move a step immediately afterwards!'

Find out more about exercise in our Choices booklet (PDF document)

Find out more about MS Awareness Week

Guest blog: “I feel like I’m getting one over on my MS”

Posted on: April 25 2019

As part of MS Awareness Week, in this guest blog Nigel tells us all about the social side of exercising and how it has helped him...

Photo of Nigel, MS-UK clientI 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.

Find out more about exercise in our Choices booklet (PDF document)

Find out more about MS Awareness Week

Guest blog: “I can’t value the exercise highly enough”

Posted on: April 24 2019

As part of MS Awareness Week, in this guest blog Nina tells us all about the benefits she gets from exercising...Photo of Nina

'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.'

Find out more about exercise in our Choices booklet (PDF document)

Find out more about MS Awareness Week

Guest blog: 'I feel extremely lucky and proud to be able to run the London Marathon for my aunt...'

Posted on: April 23 2019

Image of Kate, MS-UK runner, with quoteThis Sunday Kate Mitchell will be taking on the Virgin Money London Marathon - that's 26.2 miles of running - and every step of the way she'll be inspired by her Aunt, Karen. Read why she's taking on this challenge in this guest blog...

'I was inspired to run for MS-UK by my Aunt Karen who was diagnosed with relapsing remitting multiple sclerosis (RRMS) in 2012. Despite how much of a change her diagnosis has brought to her life and the daily challenges it now presents to her, I find myself in awe with how she hasn’t let it hold her back. I was drawn to MS-UK in particular due to the great services they offer to those affected, such as the helpline, counselling service and wellness centre facility. Services like these were so valuable and essential to helping my aunt, so raising money to ensure they are provided to others who need them means a lot.

'The main challenge I faced when I found out I had a charity place last June was that I had never run before and it didn’t come very naturally to me. My main support came through joining a local running group, which has really helped me through the winter training runs and longer runs recently.

Image of raffle prize'To fundraise for MS-UK I utilised my job as a Makeup Artist in order to hold a luxury beauty raffle. I was very lucky to be gifted items after asking various colleagues for contributions to the prizes. I managed to gather together enough items for three large prizes and decided to sell tickets for £5 each. I posted about the raffle on social media, as well as my local running group’s Facebook page. I sold 109 tickets and raised a total of £545. After the success and popularity of the first raffle I’m looking to hold a second one!

'Make sure to put yourself out there, whether it be on social media or in your work place. I’ve posted regular updates of my training onto Facebook and Instagram to let people know about my progression and to let them know about why I’m running for MS-UK. Also not being afraid to reach out to local businesses or friends to see if they would be willing to donate items as prizes, if you decide to do a raffle. I was really overwhelmed by people’s generosity, so it’s always worth asking!

'I feel extremely lucky and proud to be able to run the London Marathon for my aunt and to be able to raise money for MS-UK. I’ve recently completed my longest training run (20 miles), which I never could have imagined myself doing! Knowing I’m running for such a great cause has really helped to motivate and keep me going with my training, and although I’m nervous, I can’t wait for start-line of the marathon!'

Visit Kate's JustGiving fundraising page