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A big thank you from us to you!

Posted on: March 25 2019

Colchester Half 2019.jpg

It was a beautiful day at the Colchester Half Marathon 2019 (24 March), the sun was shining and there was not a cloud in the sky!

MS-UK had over 60 runners pounding the streets of Colchester, including an amazing duo who both wore and ran in a tyre!

Clare Thompson and her running buddy Dave, who ran the race while carrying car tyres, really went to town on decorating their accessories in aid of MS-UK. Clare said, ‘Some years ago my wonderful sister was diagnosed with multiple sclerosis. Since then all the family have been so grateful to the work MS-UK do and we have done everything we can to help raise money for this positive and hugely supportive charity’.

It was also great to see some of our Virgin Money London Marathon runners using the event as a training session with just five weeks to go! So far #TeamPurple have raised £4,000 collectively – Go #TeamPurple!

Thank you to our 130 wonderful volunteers! These types of events just cannot happen without your commitment. You all pitched in to help and support MS-UK in any way you could. You lined the course acting as event stewards and keeping the runners safe; handed out water, bananas, medals and goody bags; directed traffic and helped people park their cars, and our volunteer photographers took some amazing shots of everyone enjoying the day. We just can’t thank you enough.

See the amazing photos from this event in our Facebook photo album today! 

MS-UK is here for anyone affected by multiple sclerosis (MS), to empower them to live healthier and happier lives by improving the understanding of MS and providing support where it is needed most.

Volunteers are paramount in our success at any event MS-UK attends. If you’ve been inspired and you would like to get involved and offer your help, please get in touch with Jenny on 01206 226500.

 

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

Guest blog: “Always dream big and chase those goals”

Posted on: March 19 2019

Mandy Bunn (low res).jpgMandy Bunn climbed Kilimanjaro and raised a huge amount of money for MS-UK

I decided I wanted to do something big for my 50th birthday in January 2019. I wanted to see how far I could push myself both mentally and physically whilst raising money for a great cause. My partner, who has multiple sclerosis, uses MS-UK’s wellness centre Josephs Court in Essex regularly. I booked to climb Mount Kilimanjaro through Discovery Adventure. Located in Tanzania and standing at 5,895 meters above sea level, Mount Kilimanjaro is the tallest freestanding mountain in the world. It has always been on my bucket list and my father inspired me to do it!

The climb would take four and a half days, plus one and a half days to descent. The steep unpredictable terrain coupled with the altitude would certainly be the challenge I was looking for and very much a change from my day job. After roping in my friend Sue to join me I began fundraising for MS-UK. It is a national charity that is close to my heart and does great work. It is dedicated to empowering people with multiple sclerosis to make the most of today, and live life to the full.

Day one

After flying from Heathrow to Nairobi and then catching an internal flight to Kilimanjaro airport, we finally arrived at our hotel ready for the start of our adventure. After meeting with the commander Helen from Discover Adventure and the other group members we set off from Machame Gate at 10am, which is already at an elevation of 1,800 metres.

At this point we were all full of enthusiasm for the next seven hours of walking which lay ahead. We set off through the rainforest, the terrain was incredibly steep and therefore we had to go very slowly.

We carried four litres of water each and every day which we were advised to drink throughout the day in order to prevent altitude sickness – as you can imagine, there were toilet breaks aplenty! With an elevation of 2,835 metres, we arrived at Machame Camp at 5pm for some hot food and an early night.

Day two

The next day we were woken at 5.30am, the temperature had dropped to -5 degrees and I found myself trying to get dressed in my sleeping bag!

We started walking and spent six hours walking up boulders – the rainforest was beginning to end, the trees had disappeared and we started to walk on a path through ferns before we arrived above the clouds at Shira Cave Camp – with an elevation of 3,750 meters above sea level.

The porters were absolute troopers in carrying our kit along with their own and endeavoured to keep our spirits high by singing local songs. Unfortunately, the first member of our group dropped out due to altitude sickness. We enjoyed another cooked meal and another early night.

Day three

We were woken up at 5.30am again after a disturbed night’s sleep – although I was sleeping, the sleep quality wasn’t good.

Sue put the group through the usual morning warm up session which was entertainment in itself, more so for the locals!

Today was going to be a big test on altitude – we were climbing up as high as 4,600 metres above sea level to Lava Tour before dropping down to 3,900 meters to sleep. The reason we climb high and sleep low is purely to adapt the change in oxygen levels.

The terrain was “Mars-like”, very rocky and unsteady under foot. I really enjoyed that day and was still feeling good, however some of the group were showing the first signs of altitude sickness and really struggling.

Day four

After being woken up at the unearthly hour of 4.45am we started off by climbing the Barraco Wall, which was huge. It took two hours to climb up it before spending the rest of the day walking up and down hills in very hot weather. We had lunch at 10.30am and arrived at Base Camp at 4pm which stands at 4,900 meters above sea level. Unfortunately that day, two other team members left the trip, one pulled out, but the other was advised by the doctor he couldn’t continue. He had high-altitude pulmonary edema which is a life-threatening condition where fluid was on his lungs, so to continue the trip would have been deadly.

Day five

After six hours of terrible sleep, we were woken at 11pm to start the summit. I was given porridge (which is more like gruel). Just as we were about to go, another team member dropped out. Head torches on we started walking in absolute darkness, uphill and very slowly.

During the seven-hour uphill walk, people were being very sick, suffering from dizziness and becoming delusional, luckily for me, the only thing that remained was the slight upset stomach which I had on day two. The lack of air was hard, and everything became a big effort and I was really struggling with the cold.

We arrived at Stella Point just as the sun rose, but we still had 45 minutes to get to Uhuru Peak which at the summit stands 5,985 metres above sea level. As we walked to the peak, we were surrounded by other zombie-like walkers – some were being carried either to the peak or back down the mountain, and people were still vomiting, but I made it!

The overall relief of making it to Uhuru Peak gave me a second wind and after some photographs, I quickly got myself back down to base camp. The downhill walk was a killer on the feet. When we got back to basecamp, we had a quick lunchbreak and then another two hour walk to Millennium Camp (just because we hadn’t walked enough that day!) for a well-deserved sleep.

I was absolutely exhausted to the point I couldn’t unzip my bag to get my sleeping bag out. Everything seemed to require so much energy, which I just didn’t have. I just fell in the tent!

More force feeding and the final Kilimanjaro sing song and dance with the 50 strong crew who had supported and looked after us all the way. It was so infectious we were all singing and dancing in our exhausted state, it so lifted the mood.

Overall, my trip was varied with huge ups and downs and lots of laughter and camaraderie. This is undoubtedly up there with my best and most rewarding challenges. I’ll always a grateful to be able to have had the experience.

So thanks Pops for planting the seed!

What’s next you might ask? Well watch this space…

Always dream big and chase those goals because you never know when you will not have the luxury to be able to do it again.

I am extremely grateful for my family’s support and the generosity of everyone who has donated. There is still time to sponsor me and if you would like to, please click here.

Thank you,

Bunny

 

One man, four mountains, in one day!

Posted on: March 14 2019

Guy Cooper blog pic.pngMS-UK fundraiser of month Guy Cooper fights back against his own MS by fundraising for others affected by MS

In May 2011, I was just three weeks into a new job. One afternoon, I suddenly lost vision in my left eye. After a couple of days, of my vision getting worse, I went to my GP. He immediately referred me to the Royal Gwent Hospital, Wales. After nine months of tests and examinations I was sent for an MRI scan.

When the results came in, I was informed that I was being transferred to my local neurology team. At my first appointment with neurology, I was shown my MRI Scan and told I had have multiple sclerosis (MS).

My MS has progressed slowly, but I have had some minor relapses and struggled with fatigue. I've also had a slow, but increasing loss of sensation in my left leg and arm.

To combat the fatigue I took up cross-country walking because I am surrounded by mountains where I live in Wales and it occurred to me I had never explored most of them - I wanted to put that right. I spent many happy hours in the areas overlooking Caerphilly and Cardiff, learning about the local history.

In the summer 2018, I suffered my worse relapse to date, which lasted eight weeks and took even longer to recover from. It hit me hard and really knocked my confidence. For the first time since I had been diagnosed I felt like I was losing the fight.

I decided to fight back from the relapse and I needed something to work towards. So I set myself the challenge to attempt my most ambitious hike to date. After receiving encouragement and support from my friends when I mentioned trying to do something, I then shared my plans with my work colleague Stina. I was braced to be told I was being stupid, but not only did she back me, she offered to help me plan the route and train for the attempt. My line manager Tim, who is also a keen walker, heard about the idea and also offered to help.

A few days after Christmas 2018, I was doing a Google search for MS support when I stumbled across the MS-UK website. I was impressed by how friendly it seemed, with natural photos and names of real people there to help. I liked the services they were offering on their website and decided I wanted this charity to benefit from my adventure, so I set up a JustGiving page. I spoke with the fundraising team because I wanted to make sure the money I raised would go towards sustaining the services that MS-UK provides for people with MS. I realise that not everyone is as fortunate as me. My symptoms haven't been life changing, I've had excellent medical support from my GP and MS team at The Royal Gwent, and I have an amazing group of family and friends who have stood by me.

So, on 16 March 2019 at around 8am, I will be setting off with support from Tim and Stina, to cover Bedwas, Machen, Rudry and Caerphilly Mountains in one day. The route will be just over 14.5 miles and we hope to complete it in under eight hours – wish me luck!

If you are inspired by Guy’s story and would like to support his fundraising effort, visit www.justgiving.com/fundraising/guy-cooper2 to donate. Thank you!

If you’ve been inspired to take on your own challenge, contact Lucy on 01206 226500, or email lucy@ms-uk.org.

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:

Guest blog: 'I don't know what the future holds, none of us do, but I run and keep as healthy as possible...'

Posted on: March 08 2019

Photo of Jan, MS-UK runnerIn 2017, Jan Clarke Taplin was diagnosed with multiple sclerosis (MS). In this guest blog, Jan tells us about coming to terms with her diagnosis and why running has given her a new focus in life...

In January 2016 I had a very frightening experience when my eyesight in one eye deteriorated quite quickly to the extent that I wasn't able to continue my work as a dentist. Over the next year and numerous tests I was no further forward and my eye made some recovery. Following a second episode with my other eye in 2017 I had further scans and a lumbar puncture which finally led to the diagnosis of RRMS or relapsing remitting multiple sclerosis.  

I started to learn about treatments, being a medic I was sure I would follow the disease modifying therapies (DMTs) or daily injections of immunosuppressants, but I was encouraged to try another approach. My own GP put me in touch with a friend of hers who had been managing his own MS through diet and exercise, Alan Caldwell. Alan was a great inspiration to me and when I first met him he had just successfully completed the Virgin Money London Marathon running for MS-UK. This was exactly what I needed to hear at this time, I was in shock with an MS diagnosis and scared for the future. As we know no one can yet predict the outcome of your MS and indeed, it affects everyone differently, so to know that Alan was doing so well following the Best Bet Diet, an exercise regime and supplements meant I was going to look at all this first.

I embarked on the Best Bet Diet which I thought would be so difficult at first, particularly cutting out all dairy and gluten but I did it and haven’t looked back. My neurology team have also been supportive of my choices which again is encouraging.

During all the uncertainty with my health and before I had received an MS diagnosis I decided to start running. I joined local Five Star Active group based in Auchterarder and puffed and panted my way through 2 minute runs!! I was a complete beginner and whilst an outdoorsy type I had never run before. I remember the elation I felt when eventually running one dark Friday night we realised we had run for 12 minutes non-stop!! 

From there I ran a 5k then a 10k. With news in December 2017 that I may be facing MS I decided to sign up for a Half Marathon as I was terrified if I didn't do it then it may never happen. So in May 2018 a month after my confirmed diagnosis I proudly completed Loch Leven Half in 2 hrs 17 minutes. 

During the rest of 2018 I tried to keep my miles up and my fitness level as I started to come to terms with having this chronic disease. I was learning (and still am) when to push my body, and when to rest, how to fuel and which foods keep me healthy. 

I had dark days and towards the end of 2018 my GP suggested I needed some counselling which I have received both privately and from MS-UK. The services MS-UK provide have been a source of great help for me so I am therefore delighted to be able to raise funds for MS-UK.

I was dubious about entering the Virgin Money London Marathon as I was concerned it may be too much for my MS but I have gone from strength to strength over the last year, I don't know what the future holds, none of us do, but I run and keep as healthy as possible and stay in the moment as much as possible. 

In January several of my running club buddies were starting their training for the London Marathon, we have nine from our club heading south for the run, and I thought if I’m going to do it, it’s now or never. I sent a message to Jenny at MS-UK to find out if there was a chance my waiting list place would come up and after a very excitable phone call, she offered me a place.

If I had a doubt about the marathon it was dispelled that day with my overwhelming excitement about it and also how delighted my friends, family and running buddies were too.

The training is so far on track, we have a wonderful coach who has put a great programme together for me. She knows about my MS and together we monitor it, she insists on two days rest after my long run and I never run consecutive days. Having other running buddies makes it easier to motivate yourself and the MS-UK runners have also been great, we interact in a Facebook group and follow each other on Strava.

I have some fundraising events planned but most of my target has been met from my initial post on Facebook sharing my story and my JustGiving page. I was overwhelmed by the amount of support I received. Many people did not know what I was going through and the messages I received when I finally told the world gave me a huge boost.

I am excited for London and delighted to be part of Team Purple, see you at the finish!!

Jan x

Would you like to take on a challenge in aid of MS-UK?

Find out all about fundraising and becoming part of #TeamPurple on our website today!

Research shout out: MS patient and carer views needed to inform NHS Wales

Posted on: March 08 2019

The All Wales Medicines Strategy Group (AWMSG) are seeking the views of multiple sclerosis (MS) patients and carers about new medicines it will consider recommending for use in NHS Wales, such as fingolimod (Gilenya), to treat MS in paediatric patients.

They would like you to share with them what it is like to live with MS or to care for someone who has it, and by contributing you will provide invaluable information about patient and carer needs. 

In addition, they will be asking clinical experts to give their views and the medical facts. All of this information combined will give a really good insight into the real effects MS has on patients and carers and help inform the drug approval process. You are not expected to have all the answers, but anything you can share will be incredibly helpful.

If you would like to share your experience download the questionnaire to complete and send it to the address below by the 18 March 2019:

All Wales Therapeutics & Toxicology Centre

Academic Centre

University Hospital Llandough

Penlan Road, Llandough

Vale of Glamorgan

CF64 2XX

Alternatively you can fill out the questionnaire here. All information shared with AWMSG will be kept confidential. 

AWMSG is meeting on 15 May 2019. At the meeting the group’s lay member will summarise all comments from patients and carers, and patient organisations. Only AWTTC and committee members will read the completed questionnaires.

If you would like more information, or help with completing the questionnaire, please call 02920 716900 or email AWTTC@wales.nhs.uk.

Gogglebox’s Scott McCormick accepted for HSCT treatment in London

Posted on: March 06 2019

You may recognise Scott’s face, he is in fact the dad to the McCormick family on Channel 4’s popular series Gogglebox...

What you might not know is that Scott has been living with multiple sclerosis (MS) for 13 years and after recently seeing a worsening in his condition applied and has been accepted for Haematopoietic stem cell transplantation (HSCT) treatment in London.

Scott has had a coveted career as an aircraft engineer in the Royal Air Force and was diagnosed with MS in 2006. With an MRI scan his neurologist identified that he has significant lesions to confirm he has MS.

He tried the disease modifying therapies approach and gave beta interferons a try, but they didn’t agree with him. So he decided to take the no-drug route for 13 years before his MS became more active in recent years.

Like many people’s HSCT stories, Scott didn’t know anything about the treatment until his wife found information online. He has since been accepted for HSCT treatment in London and wants to raise awareness and share his experience exclusively with MS-UK and its followers. This is the first of a number of vlogs Scott will be sharing with us, so please do follow his journey with us.

Scott thought it was important to express that he is no way an expert and MS affects everyone differently, but hopes that sharing his story will give everyone an idea of what’s involved in the process and what to expect. Please do share your thoughts and comments with Scott via our social media pages and his own @goggle_beard.

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.

Caution: Please be aware that some of the language used in this video may cause offence.