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Good luck on Sunday!!!

Posted on: July 29 2016

20150802_124224.jpgWith the Prudential RideLondon-Surrey 100 this Sunday, we have a team of 40 riders taking part in this exciting event. We want to wish all our riders the best of luck and hope the 100 miles breezes past.

We will be there on Sunday, by Trafalgar Square just before the riders turn into The Mall for the home stretch. Keep your eye out for us as we will want to give you all a massive cheer, then you will know you’ve almost reached the finish line.

If you have any supporters coming to watch they are more than welcome to come and join us at the cheering point and give you a loud cheer that will hopefully help you across the line.

Let’s hope the weather holds out, good luck to all our fabulous riders and thank you for your support.

Mark

MS-UK connects with the MS Trust…

Posted on: July 26 2016

ms-trust.jpgOn Wednesday 20 July, I visited the MS Trust headquarters in Letchworth Garden City.

It was a great morning, and I met with Pam Macfarlane, CEO of the MS Trust, and Joanne Sopala, Director of Fundraising and Marketing.

The MS Trust is a charity that offers people affected by multiple sclerosis (MS) practical, evidence based information to make choices that are right for them. They also support and develop specialist MS services in the UK, especially championing MS nurses and undertaking campaigning to affect policy.

Connecting with other multiple sclerosis charities is really important to our team here at MS-UK. The UK-based MS charities are all so unique and offer people affected by MS such a range of services.

It was great to connect with the MS Trust and find out how we can support each other in the future. Of course, Myles our beloved mascot couldn’t resist tagging along too!

If you would like to connect with MS-UK, do get in touch,

Best wishes,

Amy Woolf

Top five bicycling songs for RideLondon

Posted on: July 25 2016

kim-and-larry-mangelshot-photo.jpgWith the Prudential RideLondon-Surrey 100 less than a week away we thought it would help our fabulous riders to add the top 5 bicycling songs to listen to on their way round London and Surrey to their playlists!

Our resident radio DJ, John has come up with his top 5. If you can suggest yours, we would love to hear them!

John’s Top 5.

Madness – Riding On My Bike

Queen – Bicycle Race

Mark Ronson & The Business Intl – The Bike Song

Judas Priest – Freewheel Burning

The Mixtures – The Pushbike Song

The Prudential RideLondon-Surrey 100 is on Sunday July 31, and we still have places for volunteers to join our cheering point in Trafalgar Square, so call Mark on 01206 226500 or email him at mark@ms-uk.org now.

Mid Essex ‘Getting to Grips with your MS’ evening

Posted on: July 22 2016

mid-essex-gtg-rj1.pngOn the evening of 17 July our very own Ryan from the MS-UK Helpline attended and supported an evening run by Julie Webster and Helen Willis, the MS nurses from Broomfield Hospital in Chelmsford and three of the local MS Society branches. In this blog, Ryan tells us all about it…


The local branches involved were MaldonBraintree and Brentwood and Chelmsford.

It was really good to be working together with the Local MS community, MS clinical services and the MS Society. We always enjoy these partnership events and hope that there will be many more to come.

The event was aimed at people who had attended a ‘Getting to Grips’ course in the last few years. The Getting to Grips course is a valuable introduction to all things multiple sclerosis for people who are newly diagnosed. The content of the original course usually includes connecting people to the local MS community and MS clinical services, and gives talks and information on symptom management, diet, lifestyle, welfare rights and employment issues. Many of the local MS Society branches run courses either the same (or very similar in nature) which are tailored to a specific area. If you are newly diagnosed with MS and want to know if there is a ‘Getting to Grips’ course running near you, contact your local MS Society branch.

The session I attended was an informal follow up bringing prior participants together to gain further information and support. There were approximately 50 people in attendance who were a mix of people with MS, family members, friends and allies. The evening had a strong emphasis on self-management, wellness, lifestyle and diet.

ryan.jpgThere was a presentation from a local man living with MS that gave a personal perspective about living well with secondary progressive MS, he talked openly and honestly about his journey so far, sharing the things that he has tried over time and the strategies he uses now to self-mange his symptoms.

I then spoke about ‘Exercise and Wellness’, giving information on the proven benefits of exercise for people with MS, the types of exercise and activity that people can do, tips on getting exercise right and how to access support locally. I also talked about ‘wellness’ and the importance of having a holistic approach, ensuring that consideration has been given to physical, mental, social and emotional wellbeing.

To highlight the importance of this holistic approach, which thankfully many clinicians and MS professionals are now taking on board, I spoke about the ‘MS Brain Health’ Initiative. The MS Brain Health initiative is an international partnership of clinicians and organisations calling for change in the management of MS. The initiative has emerged from a new evidence-based international report that recommends strategies to increase lifelong ‘brain health’. The strategy gives tips for ‘six ways to a brain-healthy lifestyle’ which very much reflects the holistic approach to gain a better quality of life in the longer term. I also talked about MS-UK’s wellness studio Josephs Court and the range of support on offer to support people with a neurological condition in Essex.

The group then had talks that gave further personal perspectives of living with the effects of MS. We heard from a family member, who spoke from the heart and gave an open and frank insight into the shared journey that families undertake after a diagnosis of MS, as well as an incredibly inspirational story about one man’s mission towards fitness post diagnosis, which included cycling from Essex to the south of France! It was great to hear from people living life to the full.

Overall the evening was incredibly interesting with the great outcome of connecting members of the MS community, giving insights into living with MS and ensuring people had up to date and trusted information.

Take care,

Ryan

MS-UK Helpline

Summer Holiday – competition time

Posted on: July 21 2016

minimyles.jpgWith the sun finally coming out just in time for the holidays, why not be in with a chance to win a mini Myles bear to take around with you everywhere you go this summer?

Myles would love it if he could come and accompany you around on your amazing adventures, whether you’re going to the beach, playing cricket or even at a family BBQ.

Myles will always be a brilliant guest for you this summer! Myles has already been to some awesome places but he still wants to see more of the world.

To be in with a chance of winning a mini Myles all you have to do is answer this simple question:

What date is the Virgin Money London Marathon in 2017?

Please email your answer to Mark before Sunday 31 July and you could be the lucky winner taking home a mini Myles.

Thanks,
Mark

Volunteering for RideLondon

Posted on: July 20 2016

kevin-holditch-4.jpgMS-UK are always looking for volunteers, and on Sunday 31 July we have our Prudential RideLondon-Surrey 100 fundraising event in the heart of London.

The course covers 100 miles, starting at the Queen Elizabeth Olympic Park. They will then ride through the closed roads of London before heading out to the hills of Surrey including Box Hill and Leith Hill before riding their way back to London and finishing on The Mall.

Would you like to take up the challenge and be one of our volunteers to support out team? If so, please call Mark Drain on 01206 226502 or email: mark@ms-uk.org.

Correction to criteria for exergaming study

Posted on: July 19 2016

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You may recently have read our blog post ‘Find out about taking part in the exergaming project by the University of Essex…’  regarding a study the University of Essex is conducting looking at how exergames can help with some MS-related symptoms. Unfortunately there was an error in the inclusion criteria. The original post stated that participants must have a Patient Determined Disease Steps of 3 to 5, this should have stated 0 to 5. 

Please see below corrected information
The trial will take place at MS-UK in Essex, for eight weeks, beginning in August 2016. We are looking for 20 people to take part in the study. 

Who can take part?
There is inclusion criteria to take part in this study. All participants must:

  • Have a definitive diagnosis of MS
  • Be ambulatory (i.e. able to walk aided or unaided)
  • Have a Patient Determined Disease Steps of 0 to 5 

Patient Determined Disease Steps
0 = functionally normal with no limitations on activity or lifestyle. Patients may have minor abnormality on examination, such as nystagmus or an extensor plantar. The course is relapsing-remitting with a return to baseline with or without treatment. These patients are not treated with any ongoing symptomatic therapy for MS.

1 = mild symptoms or signs. These patients have mild but definite findings such as sensory abnormalities, mild bladder impairment, minor incoordination, weakness, or fatigue. There is no visible abnormality of gait.  The pattern of disease is relapsing-remitting, but patients may not have a full return to baseline following attacks. These patients may use ongoing symptomatic therapy such as amantadine, baclofen, or oxybutynin. 

= the main feature is a visibly abnormal gait, but patients do not require ambulation aids. The pattern of disease is relapsing-remitting or progressive. 

= intermittent use of cane (or other forms of unilateral support including splint, brace, or crutch). These patients use unilateral support primarily for longer distances, but are able to walk at least 25 feet without it. The pattern of disease is relapsing-remitting or progressive. 

4 = these patients are dependent on a cane or other forms of unilateral support and cannot walk 25 feet without such support (eg, these patients may hang on to furniture inside their homes or touch the wall when walking in clinic). Patients may use a scooter for greater distances (eg, malls). The pattern of disease is relapsing remitting or progressive. 

5 = patients require bilateral support to walk 25 feet (eg, two canes or two crutches or a walker). They may use a scooter for greater distances.  The pattern of disease is relapsing-remitting or progressive.

What will happen?
We are looking for 20 people:

  • 10 people will act as a control group. This involves completing some assessments and questionnaires and the beginning and end of the study
  • 10 people will come along to MS-UK and play the game for around 20 – 40 minutes, twice per week for eight weeks. You’ll also have to complete some assessments and questionnaires at the beginning and end of the study

It is hoped that this study will prove playing these games helps people with MS, and pave the way to funding a larger-scale trial in the future. If you can spare the time to take part and you meet all of the criteria, please get in touch today and sign up!

Thank you,

mike-sig.jpg

Michael Kinton

Happy holidays? Send Myles your pics!

Posted on: July 19 2016

Hi everyone,

In 2016 we are celebrating the Year of the Bear, and I have to say I am rather enjoying myself! I have been travelling around with some lovely people and visiting some great places, and all of my photos can be viewed on my very own Instagram page!

I would love to include your photos too, so please do send them in to me at myles@ms-uk.org and I will add them on! Don’t forget to use the hashtag #SmileswithMyles if you post them yourself, so I can check them out.

Happy holidays everyone!

Fundraiser of the month - Peter Thompson

Posted on: July 15 2016

peter-thompson_sm.jpgMy run for ‘The London Mother’

I am 58 years old and have been a keen runner since my mid-30’s. In fact my love of running began when I was at school when, aged 14, I won a big trophy on Sports Day for winning a 1500 metre race. I retained the trophy for 2 more years and felt that at last I’d found something that I was good at!

Hanging onto that memory, I came back to running in my 30’s simply as a way of keeping fit. Being of a slightly competitive nature, I started to enter a few races, and found that I did quite well. After a while I got myself a coach and I qualified to run for the County, and even won some races. It’s like anything, if you practice, you get better…

And I’ve just carried on really. Of course you get slower as you get older, but I still have that mentally of wanting to train everyday, and luckily my wife is the same!

Another great thing about running is that race organisers do generally consider the older runners, and give out age group prizes, so there’s still something to go for even now I’m not up with the leading group anymore.

My sister-in-law, Juliet, is attractive, vivacious, intelligent, and charming. Six years ago she received the news that she had MS. She is amazing, she fights it everyday, doing her best to keep up an exercise regime, supporting her husband and two sons, and working in a local Estate Agent near her home.

The young team she works with love her. She provides an experienced and caring ear to listen to their problems, a hand to guide them, and even a shoulder to cry on. They have dubbed her, ‘The London Mother’. Advice on subjects as diverse as girl friends, boy friends, cooking, social outings, you name it, are taken to Juliet for her wise counsel.
Juliet has her own little saying, ‘As long as I have my mascara and lip stick, I’ll be okay’.

Over recent years, Clare, my wife, has done lots of fund raising for MS-UK, so this year I decided that I wanted to do something. I set myself a motivating challenge.

The North Downs 30k race, which starts and finishes in Gravesend is a challenging event to say the least! Nearly 19 miles of off-road trails, immense hills, and this year, following days of heavy rain, deep mud in places. It is described on the entry form as being, ‘uplifting’, ‘brutal’, ‘unique’, ‘tough’, ‘iconic’, and ‘harder than a marathon’.

An added bonus to this year’s event was that it was designated to be the British Master’s Trail Running Championships. This meant that you were competing directly against runners within 5 year age bands, and if you won your age group you received a British Championship gold medal! There were silver and bronze medals too for the runners-up.
So, the race provided me with two aims: (a) To raise a decent amount of money for MS-UK, and (b) To win a British Championship medal!

I made this plan in February, so I had 4 months to train specifically for this event, to take place on 26th June. Although Essex is generally considered to be fairly flat, where I live in Saffron Walden, there are some decent hills. And I ran them. Repeatedly. I made a training plan, and stuck to it, and I arrived at the race knowing that I was in decent shape.

The fund raising was going quite well too, and I had around £600 pledge to the cause by race day.

The run was a magnificent event! In all my running years I have never done anything quite like it. Around 600 runners charging across the North Downs. It was so tough! The constant rhythm-breaking effect of the hills, the mud, the umpteen styles and kissing gates, and even steps, that had to be negotiated, was energy and strength sapping. The last 10k was hard, but I did it, and finished in 2 hours and 32 minutes.

I was 45th overall, but 1st in my Age Group!

At the awards presentation afterwards I received my British Master’s medal from the Mayor of Gravesend. I was so pleased!

Writing this, two days after the event, my legs are still incredibly stiff! I have run 8 marathons in my time, but I don’t think that I have ever known tiredness like this before! It was absolutely worth it though.

The people at MS-UK have supported me brilliantly along the way, checking how things were going, wishing me luck before the race, and asking me how it went afterwards. I am pleased and proud to have raised some funds to support them in all the great work that they do for people like Juliet. My ‘JustGiving’ page is still open so hopefully yet more can be added to the running total.

When tiredness was creeping-in in that last 10k, I thought of Juliet. I thought of her courage, and how she would never give in. The ‘London Mother’, from Essex, inspired me.

Have your say on Neurology in Essex

Posted on: July 15 2016

North East Essex Clinical Commissioning Group would like to hear your experiences of Neurology services provided across Colchester and Tendring, including services at Colchester Hospital.

You can complete an online survey today to have your say.

The Group are also holding two workshops on Thursday 28 July from 10am – 12.30pm and 1.30pm – 4pm in which you can give your views. The workshops will be held at RCCG Stillwaters, Heath House, Heath Business Park, Grange Way, Colchester CO2 8GU.

You can confirm your attendance by calling 01206 918700 or by emailing the Group directly. 


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