Skip to main content

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

Stem cells a-go-go

Posted on: April 23 2019

Earlier this week, Scott McCormick had his stem cells harvested for HSCT treatment at Hammersmith Hospital

Eros my mate.jpg

Meet Eros! That’s the big old chunky machine next to me, a centrifuge in essence, which will be taking my blood and spinning it. As the image below shows, the heavy red blood cells, will separate and settle at the very bottom and just above is an amber, orangey band; these are the magical stem cells, which will be decanted off for use later. The top and majority is the plasma, the main carrier of the bloods components. Fascinating stuff.

Diagram of what Eros for in the centrifuge.jpg

This morning, when my blood results came back from the lab, they informed me that my stem cell count was very good at 3.13 million. I went to sleep in the room as they harvested the cells. Yay, a few ZZZZs!

Due to my count being a good one, my bones have let me know they have been working hard by aching quite a bit.

Eros was a good fella and did his job so very well. I found out that there are only three of these amazing machines at Hammersmith Hospital and cancer patients get higher priority, so that’s why there is a systemic bottle neck for HSCT treatment for MS patients. Seeing and hearing this really did make me aware of how lucky I am to have made it past the selection board.

And here they are. Have a look at that bag of freaking magic! Three million plus stem cells hot off the press, well my arm.

They have been confirmed as good to go and cryogenically frozen until my call back in a few weeks’ time.

To find out more about how this part of the treatment went and how Scott is feeling now, view his latest vlog here.

Me just told they have all the stem cells in the bag to my right.jpg

 

Fundraiser of the month - Sue is taking on the marathon!

Posted on: April 23 2019

Photo of Sue Bennett with a marathon medalAs this week sees the Virgin Money London Marathon happening our Fundraiser of the Month in April is Sue Bennett. Living with multiple sclerosis herself, Sue feels she has even more of a reason to raise funds for MS-UK...

I started supporting MS-UK in 2014 when my running buddy and I decided to participate in a running challenge of three marathons in three weeks, with London being the finale of the trio. Having missed out on the ballot we were given the chance of a place with MS-UK, which was a good fit because I’ve had relapsing remitting multiple sclerosis since my late 30s. I was immediately hooked and have been fundraising for the last five years now. I’ve raised a total of £16,372.20 so far!

This year will be my fifth marathon, all of which were charity bond places with MS-UK. Each marathon has been special in its own way; two have been with my buddy Debbie Germain, one was with my husband, last year I ran with my daughter and this year I will be by myself. The trio of marathons was an epic challenge though and a very proud moment.

Without a doubt the end of the race is very special, you are treated like a superstar by the charity and they look after you as though you have just won the gold medal.

When it’s come to raising the funds for each race I’ve organised lots of different events. I have done a quiz night a few times, various raffles, I had race entries donated for me to auction, as well as a private run coaching session with Shane Benzie.

I organise a yearly Halloween and Christmas 5k night run around Greenham Common Air Base, a fantastic spectacle of lights moving around the Common in the pitch black with medals, hot soup or mulled wine at the end.

I have a Rock and Roll Bingo evening next month where you have to guess snippets of songs and cross off bingo numbers, which should be fun.

One of my more notorious fundraisers was with my buddy Debbie. We produced a Naked Runners Calendar, with 12 of our male running friends all tastefully photographed by our photographer friend, they all have appropriately placed props of course! The calendar sold for £10 and proved to be very popular.

I’d definitely encourage anyone who’s been thinking about supporting MS-UK to give them a call. They will support you just as much as you support them.

If you would like to support Sue Bennett in her fundraising efforts for this year’s Virgin Money London Marathon, visit her JustGiving page

MS Awareness Week 2019 is nearly here...

Posted on: April 15 2019

Hello,Cover image of MS-UK Choices Exercise booklet

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. 

We hope you enjoy the booklet and don't forget to get involved next week on social media using the hashtag #MSAW2019.

Best wishes,

The MS-UK Helpline team

Follow us on Twitter

Like us on Facebook

Physiotherapy students join the team at MS-UK’s wellness centre Josephs Court

Posted on: April 08 2019

IMG_0918.JPG

Meet the Physiotherapy students Julian Chamberlain-Carter and Rebecca Wilson who are currently completing their placement and supporting the team at MS-UK’s wellness centre Josephs Court, Colchester. They are both studying their Masters in Physiotherapy at the University of Essex. Over the course of their two-year degree they must complete six placements made up of five-week increments. They were specially selected to partake in this new emerging role which is a first of its kind both at the University, within Essex, and with ourselves at MS-UK.

Julian was born and bred in Colchester, England, he comes from a sporting background and has completed a degree in Rugby Coaching and Performance. His own personal experience and use of physiotherapy sparked his interest and aspiration to train to become a qualified physiotherapist. He wants to use his skills to help others with the care and rehabilitation they require. Julian has a keen interest in neurorehabilitation, particularly in Parkinson’s Disease and is currently completing his thesis in this specific area.

Rebecca is from Londonderry in Northern Ireland, she comes from a similar sporting background after completing a degree in Sports Therapy. Her interest of the human body and her personal experience with physiotherapy inspired her to carry out work experience and work with a local rugby club, which further affirmed her interest in pursuing physiotherapy as a career. Rebecca has previously supported MS-UK three years in a row at the Virgin Money London Marathon providing massage for those competing for the charity. Rebecca’s interest varies from physiotherapy to paediatrics, pelvic health and neurology.

Together they are both at Josephs Court using their physiotherapy skills and knowledge to develop an emerging role for physiotherapy in the future with MS-UK. Currently they are evaluating the service provision and developing new pathways for greater exercise, health and wellbeing benefits. These new pathways include treatment for foot-drop, gait training, upper limb function and balance. Alongside the physiotherapy specific exercise, advise and education, the students are learning about the various services that the charity has to offer and will be attending social events, such as coffee mornings, while undertaking their placement.

Through the placement the students are hoping to leave their mark by providing a sustainable service that clients can make use of. Through the development of this placement both MS-UK and the University of Essex are looking to create a strong link to allow future physiotherapy students to complete placements with us at Josephs Court to further allow the current users to get the best possible services that we can provide.

University of Essex host the MS Olympix - and we were invited!

Posted on: April 05 2019

Hi everyone,Photo of the group at the Exergaming MS Olympix

Way back in 2016 MS-UK hosted a team from the School of Sport Rehabilitation and Exercise Sciences from the University of Essex here at our headquarters. 

The team were running a trial testing the use of an Xbox game specifically designed to support people living with multiple sclerosis (MS). Since then, they have been working hard to continue exploring possibilities in this area, and yesterday I had the privilege of being invited to the MS Olympix at the University of Essex.

The day included taking part in three different games that could be played standing up or sitting down. 

Sarah, who was first diagnosed with relapsing-remitting MS in 2007, attended the event...

‘After hearing about the day at a Josephs Court social coffee morning, it sounded really interesting. It is really good fun and some of the games – especially the ones that involve lifting my feet up – really helps my balance and coordination. It’s like playing the Wii at home but more fun!’

Sarah added, ‘the system comes from a background of rehabilitation, so I’d love to see it developed so people like me, living with MS, can use it at home’.

A big thank you to the team for inviting me to join in and we will keep everyone posted on future studies in exergaming!

Best wishes,

Laura

Laura May, Communications Manager

Your MS magazine of choice hot off the press!

Posted on: April 03 2019

Issue 114 front cover_1.jpgIssue 114 of New Pathways magazine is out now. In this jam-packed edition, we take a look at the recent changes that could affect those of you who take CBD oil, on page 12. We also ask ourselves “Am I having a relapse?” Whether you’re newly diagnosed or have been living with MS for years, there will come a time when you will ask yourself this question, to find out more turn to page 39.

Page 21 offers some helpful advice to those who have found themselves caring for a friend or loved one and don’t know where to start when it comes to finding support.

Louise Willis MS-UK Counsellor talks about managing fatigue and how spoon theory can help you manage and explain it to others on page 28.

MSer and feature writer Ian Cook investigates if magnets can help multiple sclerosis in Cook’s Report Revisited on page 19.

Mary Wilson, #5 Para-Badminton player in the world, reveals her hopes of representing Team GB in Tokyo 2020 Paralympics on page 24, and discover how music therapy could help your MS on page 23.

In addition, don’t forget to read all the latest news and real life stories from MSers living life to the full and why not give our tasty free recipe a try!

Enjoy reading!

About New Pathways

New Pathways magazine is a truly community led publication written by people with MS for people with MS. Each issue offers a variety of information on drugs, complementary therapies and symptom management, plus all the latest news and research and your amazing real life stories.

To subscribe, visit www.ms-uk.org/NewPathways, or call 0800 783 0518. Audio, plain text and digital versions of the magazine are available on request, simply call 01206 226500 and let us know your requirements.

Gogglebox’s Scott McCormick goes purple for MS-UK

Posted on: April 02 2019

Purple beard.JPGThose of you who have been following Scott’s story will know that he is letting MS-UK follow his HSCT (Hematopoietic stem cell transplantation) journey to treat his multiple sclerosis (MS). Scott aims to raise awareness of MS and this treatment option, and will be vlogging throughout his treatment giving the MS community a unique insight into what HSCT involves.

Scott was diagnosed with MS 13 years ago and until recently he had lived relatively unaffected by his condition, pursuing his career as an aircraft engineer. When his condition became more active and having tried some of the common MS drugs options, which came with awful side effects, he sought a different approach.

It was his wife Georgia who found and researched HSCT treatment and having considered his options Scott decided that the treatment is the right choice for him.

HSCT is an intense chemotherapy treatment for MS. It aims to wipe out the body’s current faulty immune system and then grow a new one using the body’s own stem cells, which are found in the blood. Although this method cannot cure MS or repair the damage it has already caused, it has been found to halt progression of the condition in a number of people. However, it is also important to note that it does not work for everyone and there is no conclusive evidence to suggest how long it may halt progression for.  

Scott knows that the treatment isn’t without risks, but says: “This was a split second decision for me. I am 45 and my boys have seen me work hard to provide for them. When I get home I am tired, I can be irritable.

“It is true that there is a 1 in 50 mortality rate, but if you flip that on its head it is also like being presented with a 98% survival rate. The alternative is a clear and distinct 100% rate of still having MS, and it devouring me. There is no light at the end of that endless tunnel, where you don't know where, or when you get off. All you know is you still have MS and it will not let you go.”

Having met with the team in charge of his upcoming treatment, Scott was informed that it is highly likely that he will lose his hair, including his impressive beard which he is very well known for. So to celebrate his bearded efforts, his upcoming treatment and show his support for MS-UK, he had dyed his beard MS-UK purple!

Want more information about HSCT?

Our helpline is here to listen and offer you all the information and support you need to make your own decisions. Call us free on 0800 783 0518, email info@ms-uk.org, or live web chat with us today.

Planning for a healthier and happier future...

Posted on: March 21 2019

Hi everyone,

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,

Best wishes,

Amy

CEO

5 ways smoking can impact multiple sclerosis

Posted on: March 13 2019

 

Stop smoking image (low res).pngToday is National Non-Smoking Day. Have you ever wondered how smoking can affect multiple sclerosis (MS)? Do you need help quitting? Read on...

 

1          Developing MS

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.

 

2          Disability progression

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.

 

3          Passive smoking in childhood

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.

 

4          It can impact treatment

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.

 

5          Smoking doesn’t relieve stress

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.

 

Need help quitting?

If you need help quitting smoking visit:

Pages