Hello everyone, Yesterday (Sunday 30 July) we cheered our hearts out to support the dedicated cyclists who pedalled 100 miles for the Prudential RideLondon, and it was an amazing afternoon!
You can check out the photos on Facebook now!
Huge congratulations are in order for our MS-UK team who have trained so hard for the past months in all types of weather, cycling to conquer this prestigious event. We were so proud to see them all with a smile on their face as they went past our cheering point and on to the finish line in style.
The total funds raised so far have reached over the £2,000 mark and counting. This is a huge achievement and an amount that our riders have been working tirelessly to raise. We hope they all had a well-earned break after the race and they aren’t too achey today!
For most of the fundraising team it was our first time seeing the event and we thoroughly enjoyed the day, cheering on our riders with our megaphones and rapper clappers from our cheering point on Whitehall.
We couldn’t support our MS-UK teams in the way that we do without our super volunteers, so here’s a massive thank you to them too! We are really lucky to have some regular key volunteers at our events, and it just wouldn’t be the same without them. We always need volunteers for events to help them run smoothly.
Of course, we’re opening applications for next year’s event straight away. So if you’re interested in cycling the Prudential RideLondon, get in touch with me by email or call on 01206 226500 and secure your place now!
Well done again to everyone who took part,
Events Fundraiser, MS-UK
Today we will be heading to the capital to cheer on our amazing RideLondon team as they cycle 100 miles in aid of MS-UK. In this guest blog, Paul Reeve tells us why he's taking on the challenge...
I’m Paul and I’m riding for MS-UK in the Prudential Ride London-Surrey 100 today!
I started dabbling with a bit of cycling about 6 years ago after I’d given up playing squash. It all started with poodling about on Ashtead common on a mountain bike doing no more than a few miles at a time. Then came the bi-weekly pub cycle, again just a few miles. After a while the distances grew and I tried a few Sportives, the first being 33 miles of London Bridges. As I got to a 50 mile one I borrowed a hybrid from a friend for some training and couldn’t believe the difference so that was soon followed by a hit to the credit card. After that I did the London Nightrider in 2013 which was a real test as it’s through the night. For someone who needs his sleep like I do I have no idea how easily I managed this ride. In 2015 I rode to Paris with my Son on a totally self-managed ride, choosing the shortest route available of course. By then I’d got bike no.3 – a road bike, something I never intended, much like all the clothing and accessories that I never thought I needed.This is my 2nd chance at the ride thanks to the lovely people at MS-UK as I was meant to do the ride in 2015 (and was feeling reasonably confident after Paris) when I ejected from my bike with one week to go. A cracked rib and punctured lung were the result and I still don’t know to this day what made me come off, all within a mile from home on a perfectly sunny day and without a pothole in sight.
Anyway, here we are again 2 years later. Preparation could not have been worse, particularly the past month, so I’m not feeling too confident with 70 miles as my max mileage to date, but I’ll give it a go. At least the hilly part is my local territory so maybe a bit of local knowledge could come in handy. I’m just hoping I can arrive at the Leatherhead hub with a degree of dignity intact so that my home fans aren’t too disillusioned.
I’ve raised a bit more this time to go with my £600 from 2015 and all for a very worthy cause. I lost my cousin Jeff to MS at the tender age of 44 in that year which is why I have to see this thing through. He had the most Christmas Cracker type sense of humour but always had a joke and a smile.
Good luck to all my fellow riders, especially the MS group.
Good luck to everyone taking on RideLondon today, we’ll be near Trafalgar Square cheering our hearts out with our wonderful volunteers. Look for the purple!
This week, the MS Society has called for the legalisation of cannabis for multiple sclerosis (MS) patients. In their report ‘Cannabis and MS. The role of cannabis in treating MS symptoms’, the MS Society explores the benefits of cannabinoids to those affected by pain and spasticity.
Last year, the MS Society revisited their stance on cannabis for medicinal use to better reflect the evidence, opinions and experiences of people with MS.
They conducted a survey of 3,994 people with MS to explore their attitudes and experiences of cannabis. They found that 22% of people surveyed had tried cannabis for medicinal purposes and 7% were still using it. 26% of people who had stopped taking cannabis, did so largely because of concerns over potential prosecution.
The MS Society now calls for all licensed treatments derived from cannabis to be made available to those who need them. They ask that Sativex, which is a medically licensed, cannabis derived treatment for spasticity, be available on the NHS.
They also recommend that people using cannabis to treat their MS symptoms, as a last resort, should not face prosecution, and that possession should not be a criminal offence.
The report states that the MS Society do not recommend that people smoke cannabis, and also caution that some people, particularly those with previous mental health problems, may have an adverse reaction to medicinal cannabis.
Amy Woolf, CEO of MS-UK, says in response to the news, ‘MS-UK welcomes the MS Society’s new stance and their approach of listening to the voices of people affected by MS. We will be interested to follow the progress made by the MS Society in the future on this very important subject.’
Jack Osborne, the reality TV star and son of rock legend, Ozzy Osbourne and his wife Sharon Osbourne, celebrated his five year anniversary since being diagnosed with relapsing remitting multiple sclerosis (RRMS) in April this year.
Since his diagnosis he has become an advocate for the MS community with his ‘You Don’t Know Jack About MS’ campaign in conjunction with Teva Neuroscience. The website offers easily digestible information about MS, as well as regular video updates, called webisodes, from Jack about his MS journey.
In his latest webisode Jack talks about how he told his family about his MS, something every MSer comes up against when they are diagnosed with the condition. His reflection on this time was sparked by a message he received from a successful professional athlete, who has been living with MS and hadn’t told anyone about his diagnosis, but his MS is now becoming a problem for him. He asked Jack, “What do I do?”
Jack said: “That has got to be a very scary, uncomfortable place to be.”
“My whole family was in the room when the doctor came in and said ‘well we think it could be MS’, so they instantly were made aware.”
Jack’s dad attended an appointment with him and he recalls his dad acting strange, “he was acting really awkward,” explained Jack, “but then I couldn’t imagine being in his position, you don’t want anything bad to happen to your kids.”
“My wife was hugely instrumental in that time period with helping out, and kind of not letting me get too down in the dumps because we had a three week old baby.”
Jack said he “constantly likes to challenge” himself, so that’s what he does with his MS. He said: “I kind of framed it as a challenge, it’s just a new hurdle in my life and I’ve got to figure out a way to meander through it, over it, under it, [or] whatever.”
Jack’s advice to the professional athlete was, “He should tell his family about it, the way that he would want to hear it, rehearse it and be prepared to answer a lot of questions.”
Jack likes talking about MS and keeping things positive. He said: “I have a positive outlook about my diagnosis. My outlook is, hey listen! This is what it is, this is how it could affect me, and this is how it’s not going to affect me. Physically I can’t control that, but mentally I can try my hardest to be as positive as possible.”
If you would like to share your own experience of telling friends and family about your MS diagnosis, email firstname.lastname@example.org.
If you’ve been recently diagnosed with MS, check out MS-UK’s Newly Diagnosed leaflet, which can be downloaded here for free.
Tomorrow is the last chance to take our survey all about the MS-UK Helpline, and let us know your opinions if you have used the helpline at all in 2017.
We would like to know why you chose the MS-UK Helpline, whether or not you found the information and support from our team useful and your opinions about our opening hours and accessibility.
This survey is for people who have used the MS-UK Helpline this year (2017). By completing this survey, you are helping us to improve the MS-UK Helpline in the future, so your feedback is invaluable!
As a thank you for sharing your thoughts, one lucky person will be selected at random to win a £50 Love2Shop voucher!
The closing date for this survey is tomorrow (09 August 2017), so don’t delay!
Thank you – and good luck!
Diana Baxter, Head of Services
In her latest guest blog Chloe discusses the effects of sugar on multiple sclerosis and the work of Dr Terry Wahls...
I’ve had MS for 16 years now and it’s taken all of those 16 years for me to realise the obvious. Sugar is bad for me and my MS.
Okay okay…I’ve actually always known but have turned a very blind eye to it in the past. I mean sugar is delicious! I have a good diet, don’t get me wrong, but who can resist a sugary treat?! Not me.
The problem with sugar is that the effects are instantaneous with me. If I have something sugary I go tingly. End of story. Even having a yoghurt (pumped full of sugar it seems) would leave me with tingles all down the right side of my face. So the signs that sugar was no good for me were there.
It’s only been recently though that I’ve decided to do something about it. There’s been a lot of research done into the harmful effects of sugar and I couldn’t help but take notice.
There are a lot of websites in particular that talk about the effects sugar has on MS, and how one should avoid it. I found the work of Dr Terry Wahls in particular an interesting read, and was fascinated by her book, The Wahls’ Protocol. The protocol is designed to ‘restore health and vitality to those with MS’, and was created by Dr Wahls after conventional medicine had no effect on the progression of her MS. I, and Dr Wahls, are not suggesting that people with MS shun treatment and go with the diet instead, but purely that it’s an alternative for those who have had no result from treatment. Likewise, it’s a healthy and beneficial diet for all those who have chronic autoimmune conditions, whether they are on treatment or not. I’m on Tysabri which fingers crossed seems to be doing good things so far, but had been failed by 3 treatments before.
Dr Wahls found that changing to a super nutrient Paleo diet transformed her MS. She went from being wheelchair bound to riding a bike and I urge you to look at her work. Though I haven’t managed to stick strictly to the Paleo diet myself (no wheat, barley, dairy, eggs, processed food, sugar, and reduced intake of legumes and potatoes is hard to get your head around when you’re trying to man-handle a 2 year old and living in a predominantly vegetarian household!) the emphasis on sugar was what I really found interesting. To hugely summarise, Dr Wahls’ principle is that care needs to be taken to make sure our body is working as efficiently as possible at a very cellular level. Feeding our body a high-sugar and high-starch diet ‘gum up’ your mitochondria (an important part of our cells) meaning they diminish efficiency. Sugars and starches in particular affect your body detrimentally in two ways. Firstly they are high in calories and fill you up, but provide very little nutritional value. Secondly, they encourage the growth of unfavourable yeasts and bacteria in your gut which can lead to a lot of other problems*.
That evidence, coupled with the fact that I knew full well that it was detrimental to my health (with the instant tingles) it was a no-brainer that I had to cut out sugar from my diet. But my goodness me, it was hard. There is sugar in everything. It’s only when you start looking that you realise the hidden sugars that plague us. I had two weeks of complete detox from sugar (including fruit) and now I am very careful with what I eat, trying to eliminate it as much as possible and not eat more than 10g of sugar a day. I’m no angel though…obviously I still have bad days and slip. But at least I’m aware of the bad effect sugar has on my diet. If I eat some and get tingling and a headache then that’s my own fault and I have no-one else to blame.
6 weeks in and I’m amazed at the effect eating a low sugar diet has had though. Not only have the tingles gone, but I’ve had more energy and more stamina. I just feel brighter. I’ll never know whether it is no-sugar that has done this, or whether it’s coincidence and I’m just in a good remission, but I figured that any changes I can make to my lifestyle to help things along are only a good thing. If you’re stuck in a bit of a fatigue rut, I urge you to give a low-sugar diet a go. What have you got to lose?
*All information can be found in Dr Terry Wahls & Eve Adamson’s book The Wahls’ Protocol (2015), published by Avery.
I am delighted to announce that MS-UK are charity partners for the Colchester Half Marathon in 2018 and 2019….delighted?, not half!
When we received the wonderful news from the Colchester Half Marathon race organisers that MS-UK had been selected as charity partners for 2018 and 2019 a loud cheer resonated around the office. Next year’s race has been set for Sunday March 25 2018 so grab your diary, pencil it in and get involved!
MS-UK has supported this event for many years by manning the water station at mile 11 so lots of our staff and volunteers have enjoyed being a part of this event for many years. To be charity partners for the next two years is amazing news. It’s such a well-established local event which thousands of people enjoy taking part in whilst supporting local charities. The partnership holds many opportunities for MS-UK. Firstly it enables us to increase the awareness of our charity and the services we provide to support people living with multiple sclerosis.
Although we are a national charity we have Josephs Court which is our wellness centre supporting local people living with MS.
Most of our clients visit Josephs Court on a weekly basis and receive one to one support from our professional Wellness Coaches who focus on the individual’s exercise needs and goals. We see around 180 clients a month and as well as the physical benefits they achieve through their specific exercise programme our clients gain a huge amount socially from coming to Josephs Court. We hope that the awareness we can raise through the Colchester Half Marathon will encourage local businesses and the community to find out more about our work and become involved.
Secondly we will benefit from the much needed donations from the event. MS-UK does not receive government or pharmaceutical funding to run its vital services. We rely on the generous support of our fundraisers and by taking part in events such as the Virgin Money London Marathon and Prudential RideLondon.
This will be a brilliant addition to our income for the next two years which will enable us to reach more people affected by MS. In 2018 we will be working alongside Essex & Herts Air Ambulance who were charity partners for the Colchester Half Marathon last year. We are looking forward to working with their team and supporting the race organisers with volunteer recruitment and developing our relationship with another brilliant local charity.
MS-UK are hoping for a large team of runners for this event so if you would like to run and raise additional funds for us we’d be delighted to have you on the team! We will of course support you all the way to achieving your running and fundraising goals.
Registrations are now open on the Colchester Half Marathon website!
If running is not for you but you would like to be involved please contact me to find out more about the volunteering roles available. We need approximately 200 volunteers to make the event a success and keep up to 4,000 runners that will enter the race safe.
For more information on running as part of team MS-UK or volunteering at the event please email me today.
A big thank you to Colchester Half Marathon for choosing MS-UK as their charity partner, and here’s to an amazing race!
Jill Purcell, Fundraising Manager
In our latest guest blog Christian tell us about his experiences on the MS-SMART trial...
It all began in 2015 when I saw the advert for the trial, I felt a little/lot hopeless with being secondary progressive and not taking any medication to help as at this time there are no drugs to help. I read up on the trial and completed a short survey to check my suitability for the trial, obviously being such a specimen I passed that with flying colours. A phone call follows and I was on. The trial places me on one of three drugs or possibly a fourth being the placebo. The three drugs were Amiloride (used to treat heart disease), fluoxetine (used to treat depression) and riluzole (used in the treatment of motor neurone disease).
The first day of the trial was a trip to London (Queen and everything) for a 9am start at the University College London Institute of Neurology. I was signed up and asked if I could take part in two further parts of research, one was a photograph of the layers of my optic nerve (about 20 minutes, they think they can tell speed of progression from the thickness of the layers) and the other a lumbar puncture. At first I said no to the lumbar puncture as I’m a bit cowardly but after a comment by a doctor and an hour and 18 minutes in an MRI machine I guilt-ed myself into agreeing to do it. The MS Smart trial itself was measured by an eye test with invisible letters, a walk test, MRI, peg board and a few cognition tests. Unlike the tests my neurologist sets me these were some that I actually could do without looking like a total drunk and even one that I was very good at scoring 56, 58 and finally 60 out of 60 so improving each year.
It was a long day and I think I drove home early evening. I had to return every month for a blood test and to pick up my tablets, after 6 months it reduced to every 3 months and after a year every 6 months. I live in Maidstone, Kent so it was a real day out in London for me. The tests were repeated after 1 year and on completion (2 years). In my naive mind I thought I would find out what drug I’d been taking for 2 years on my last visit but the last person does not finish their 2 years until April 2018, the results then take at least 6 months to work out so it could be 2019/20 before I find out. The nurses that took my blood and checked my tablets were fantastic, even Tiggy who made me scream like a howling banshee doing me a favour using a big needle to save time on taking blood as she needed extra. Ouch.
If I had the chance of doing it all again I would, the only real problem I had was relating to the second lumbar puncture which left me with a headache like brain freeze that lasted for a full week. I felt low after finishing my two years and the stopping of the tablets I was on, this is either a side effect of stopping the tablets or more likely just a feeling of no longer trying to stop my multiple sclerosis, I don’t like having no control.
The outcome of the trial was never to fix me but to delay or even halt the progression. I feel the same but progression is so slow I didn’t notice playing football one day to today bouncing off walls .
They are about to embark on a new trial using Statins, I was asked if I would like to do that too. We will see…
You can find out more about the MS-SMART trial on the MS Society website at www.mssociety.org.uk/ms-research/treatments-in-the-pipeline/ms-smart. Please note that this is an external site.
Tomorrow is the last chance to complete our supporter survey! The survey asks about what you’ve done in the past to support MS-UK, and what you’d like to do in the future, so please do take a moment to let us know your thoughts.
As a little thank you, we’ll be doing a prize draw at the end of the week and one lucky survey participant will win a £25 Debenhams voucher!
And good luck everyone!
Fundraising Manager, MS-UK
We are pleased to say we have been named ‘Charity of the Month’ by Give as you Live, the online shopping charity fundraising organisation!
By shopping online using the Give as you Live portal all purchases at thousands of online shops raise commission for MS-UK and help us continue to support all those affected by multiple sclerosis.
Read about MS-UK as charity of the month on the Give as you Live blog
Shop and raise for MS-UK through Give as you Live