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Appointment number three of the MS-STAT2 trial

Posted on: September 30 2019

Cathy Howard 2_0.pngCathy Howard updates us on the next stage of the statins trial

I was up early again, which was just as well because parking was an absolute nightmare at the station! When we got to UCL Queens Square Institute of Neurology my appointment hadn’t been logged on their computer, so John and I had to wait for about an hour and a half to allow for my records to be released and my prescription to be authorised and filled at the pharmacy. We consoled ourselves with lunch and coffee at a local Italian restaurant.

Once the appointment resumed the lovely nurse Sarah looked after me again. She took the remainder of my original prescribed statin/placebo and replaced it with 2 new bottles and a six-month diary. She took blood and my blood pressure, and Dr Tom Williams noted some headaches and nausea I’d experienced during the first month. He also checked my lungs and heart. As long as these blood tests are ok, I can start to take two tablets per day increasing from one. I was able to collect a CD-Rom with my MRI scan on. So excited as it’s been a long time since I last had one done.

As long as my GP is happy, I can have my next lot of blood tests, at the end of November or the start of December at my local surgery. A few days afterwards I’ll get a phone call at home from one of the research team to ask me a few questions. I’ll let you know how it all goes.

 

Fundraiser of the Month

Posted on: September 26 2019

Mathilde FOTM (low res).jpgThis month’s Fundraiser of the Month is Mathilde Bru, who swam one mile in the 2019 Children with Cancer Swim Serpentine in September.

My mum was diagnosed with primary progressive multiple sclerosis (PPMS) around five years ago when I was 16 years old. My four younger siblings and I have witnessed first-hand the effects of this life-changing illness, and so I wanted to do something to support other people with the same illness as her.

Although there is no known cure for MS, by living with my mum I have seen that there are things that can be done to improve the quality of life of MS patients, and for this reason, I can see how crucially important MS-UK is as a charity.

To raise money to help people affected by MS, I decided to take part in the 2019 Children With Cancer Swim Serpentine one-mile swim in Hyde Park. The first time I practised swimming in the Serpentine, two swans swam up to me - I’ve always been quite scared of birds so started swimming away as fast as possible, and actually ended up swimming a full mile just trying to swim away from them! The training has definitely helped with my fear of birds, as I’ve become more used to sharing the lake with the swans (who are actually much less vicious than they are said to be!)

Raising money for MS-UK has made my swim preparations a hundred times more rewarding, and I am so glad to have signed up as part of #TeamPurple. I have received a huge amount of support and advice from both the people working at MS-UK and from the other swimmers, who have shared countless amounts of training tips and motivational support. Moreover, raising money for this charity, and sharing my fundraising page to my friends and family has been a huge source of incentive for me to train harder, as I provided updates on my practice swims. My tips for fundraising would be that others send as many emails around as possible, share on all forms of social media and annoy people enough until they donate!

Mathilde has now raised £1,827.08 for MS-UK! If you would like to donate visit www.justgiving.com/fundraising/mathilde-bru.

 

A fond farewell and a warm welcome…

Posted on: September 26 2019

Trustee Chair Martin.jpgThe last few months have marked a period of change here at MS-UK for our trustees.

We are wishing our Chair of the Board of Trustees, Martin Hopkins a fond farewell as he retires from his post after 12 years of service to MS-UK. As Chair, Martin oversaw a huge amount of change at the charity, including our launch of Choices booklets, our live web chat service and change of name. 

Martin says, ‘One of my best friends was diagnosed with multiple sclerosis (MS) and have seen him deal with the shock of that I felt fairly helpless in terms of the practical support I could offer. I thought therefore that becoming involved with MS-UK would be a way of providing support.’

We wish Martin all the best for the future and we know he won’t be a stranger.

Stepping up to the Chair’s role will be Trustee Matthew Swan. Matthew is a Commercial Manager in the banking sector, is a treasurer for another national charity and is the Deputy Chair for the Colchester Mercury Theatre.

Matthew says, ‘MS-UK is an organisation which does tremendous work to help all affected by MS and I am very fortunate to have the opportunity to work with the Board and staff to help in any way I can to achieve the organisation's goals and aspirations.’ We look forward to welcoming Matthew to this role.

New Trustee - Laura.JPGWe have also welcomed two new trustees, Laura and Charlie

Laura lives in Colchester with her family and is a registered Occupational Therapist working as Head of Clinical Operations at St Helena, a hospice charity in north Essex. MS is one of the life-limiting illnesses that Laura helps to support in her role.

Laura is a strong believer in choice and independent living in spite of, and not limited by, a life-limiting diagnosis.

From a personal point of view, Laura’s sister-in-law lives with MS and as a family member, Laura has followed and supported her journey to date.

New Trustee - Charlie (low res).jpgCharlie Stebbings is 25 years old, currently living in London and works for a sports, media and entertainment headhunting and consultancy firm. In his spare time, you’ll normally find him watching or playing some form of sport.

He has been exposed to the harsh realities that MS can bring for the last 10 years when his mother was diagnosed with relapsing remitting MS.

MS-UK was the charity that he identified with most strongly and therefore when the opportunity arose to take up the position of trustee, Charlie says it was an easy decision to take.

‘The work MS-UK does is integral to the fight against MS and ensuring that those who are affected in any way have the support and knowledge to best deal with the condition. Whether you, a family member or friend have a diagnosis of MS, learning to live with the condition is a challenging task for all and there is no substitute for having the support of those professionals who you know are always there to help if needed,’ Charlie said.

Charlie believes there is plenty of opportunities for him to influence the fantastic work currently undertaken by MS-UK and he can’t wait to get started.

We are sad to see Martin retire from MS-UK and wish him all the best for the future. This is an exciting time for MS-UK to look forward to all of the amazing work we can do with our new look Board of Trustees.

Congratulations #TeamPurple swimmers!

Posted on: September 23 2019

Photo of MS-UK swimmersHi everyone,

This weekend I had a fantastic day cheering on our amazing #TeamPurple swimmers at this year's Children with Cancer UK Swim Serpentine - thank you to everyone who made the day possible! The water was a lovely 17 degrees and the sun was shining as we made our way to Hyde Park to set up our MS-UK stand in the festival area.

We were thrilled to have 21 swimmers taking on challenges in this year's swim and every penny they have raised will help us continue our work supporting people affected by multiple sclerosis (MS). Our fantastic fundraising total already stands at over £10,000 and it makes such a difference to our work at MS-UK, thank you!

Check out our photo album on Facebook today

A thousand people at the event achieved their London Classics Medal this year, including four of our very own #TeamPurple swimmers - congratulations! One of our London Classics Medal winner even learnt to swim this year just to get it on Saturday!

A massive well done to everyone who took part in the Children with Cancer UK Swim Serpentine and thank you to everyone who volunteered with us on the day to make it such a special atmosphere for our amazing swimmers.

Can't wait for next year!

Jenny

Events Fundraiser

Thank you to our #TeamPurple runners who took part in the Great North Run!

Posted on: September 09 2019

Photos of MS-UK runners at the Great North RunHi everyone,

On Sunday I had the privilege of cheering on our amazing #TeamPurple runners at the Simplyhealth Great North Run!

The weather was warm (if a little windy!) as I joined crowds of well over 200,000 people lining the route of the run, right from Newcastle to South Shields. Over the whole weekend around 58,000 people took part in events, from the 5k run through to the Great Tees 10k, but I was there to support the amazing runners taking on the Great North Run in aid of MS-UK.

This was the first year I have travelled North to support #TeamPurple at the Great North Run and I was amazed at the dedication and energy of our runners. It was a brilliant atmosphere and I would like to say a big thank you to everyone who wore our purple running vests with pride.

Photos of runners at Great North Run at end of the raceEvery penny raised from this event helps us support even more people across the whole of the UK who may be living with multiple sclerosis (MS). One service we offer is being able to listen to people’s worries and concerns through the MS-UK Helpline and offer lots of information and support at times when it is really needed. Our amazing fundraisers make this possible.

The date for next year is already out – 13 September 2020 – so if you want to join #TeamPurple please get in touch with me to register your interest. I would love to be cheering you across the finish line at this unforgettable event next year!

Best wishes,

Jenny

Events Fundraiser, MS-UK

MSer Jan Clarke-Taplin gears up for this year’s Great North Run

Posted on: September 06 2019

DSC_0128.jpgHaving been diagnosed with multiple sclerosis (MS) in April 2018 I was scared and uncertain of my future. Faced with having to take daily meds and wondering if I was going to be able to walk soon let alone run, I decided to explore treatment options for MS.

With the support of my medical team, I embarked on the Best Bet diet, increased my exercise and started on several supplements. This routine has not only kept me in remission and healthy but I feel it has made me stronger. Post diagnosis I ran two half marathons in 2018 and then was lucky enough to join #TeamPurple in London and completed the London Marathon in April 2019 just one year after diagnosis. I ran for MS-UK because they have helped me with counselling and coming to terms with my MS diagnosis. Running for #TeamPurple also kept inspiring me, as I met so many runners who also have MS and keep going!

Running has become my medicine, I have learned when to push, when to rest and how to fuel my body and I am incredibly grateful to be able to remain mobile and strong. I don’t know if I will always stay like this and I would say I battle with my mental health too to stay positive and focussed. Being a part of #TeamPurple for MS-UK gives me focus and I am so proud to wear my purple running t-shirt with the MS-UK logo on. I feel I am giving back to a charity that has supported me through some tough times.

I was delighted and so excited to be offered a place on this year’s Great North Run team, the first time MS-UK has had a presence at the event. I also managed to recruit two friends Mollie and Beki, Beki who is running her first half marathon too! We are all super excited, our team of eight will meet up for the first time at the event (hopefully) and get a team photo. It is a first for all of us, so watch this space and see our post-race photo. Of course, raising funds for MS-UK is what it’s all about and on the eve of the race we have smashed our team target and we could not be happier! If you would like to donate, visit www.justgiving.com/fundraising/Janet-Taplin2.

Baseline testing day on the MS-STAT2 trial

Posted on: September 06 2019

Cathy Howard 2_0.pngMSer Cathy Howard updates us on the next stage of the statins trial

I was up with the lark again and even earlier than my last appointment! I got to UCL Queens Square Institute of Neurology almost an hour early, but I’d much rather be early than late.

A lovely nurse called Sarah took us through to the same area we were in last time and got me my second coffee of the day. She also gave me a Baseline worksheet with questions about how my MS currently affects me physically and mentally.

Dr Nevin John explained the day’s process, went through reams of paperwork with me and I signed five more informed consent forms for sub-studies. Don’t think of the trees!

Then the tests began. The Dr who administered those was very thorough and put me through a battery of sight, memory and manual dexterity tests, as well as a comprehensive neurological test. Records were taken after each part of each test.

I completed another walking test with a mobile phone with the MSteps app attached to my arm.

I had six lots of blood taken by another lovely nurse and a cannula inserted for contrast dye to be given part way through the lengthy MRI scan. I have some anxiety issues with MRIs so my GP kindly prescribed me diazepam as a sedative.

The last part of my day was 45 minutes of MRI scans. I estimate I had about 15 separate scans of varying durations. I was asked if I’d like some music whilst in the scanner, and I thought – well, I was an 80s teenager, so Madonna would be perfect. Although I couldn’t hear a lot of it whilst the bangs, clicks and dings were going on, when there were quieter periods, I was Vogueing (in my head) and being a strutting Material Girl! The technician who completed the scans will let me have a copy of the scan at my next appointment. Yay! It means I’ll be able to discuss it with my neurologist Dr Giles Elrington next time I see him. I haven’t had an MRI since my diagnosis, so I’m quite excited about that.

I was given my statin/placebo with a diary to keep updated. One tablet a night for a month. My next appointment is on 24 September. Bring it on!