Third time lucky, not! Like me, you don’t want snow for Easter but the weather man says cold weather is on the way for the long weekend. It’s been called “the squirrel from the south” rather than a repeat of “beast from the east”, so it’s probably won’t cause the same chaos but the old girl guide in me is screaming “be prepared”.
What did I advise a few weeks back? Not much has changed with me. I’m still recovering from a relapse (MS for sh&t!) where my mobility and balance have been challenged. I’ve fallen several times (now looking at an personal alarm, and “No! it doesn’t order a pizza if I press it!”. I’d still be rich if I got paid to sleep as fatigue is so bad. My writing has been put on the back burner but the wintery weather has inspired me to write.
Shots of the snow chaos hit us all. Little man loves the white stuff. When snow really came down last time, our neighbours played out with little man. I was wanting it to be me but my mobility, balance and energy levels had other ideas. Little man’s daddy drove me us out at the weekend so I could see the snow for myself and little man could have fun with Daddy. One of the issues of bad weather plus my multiple sclerosis (MS) is lots of staying in. I didn’t realise until it happened how rubbish I would feel. If we do get more wintery weather, here are my tips for handling it for those in my boat, or anyone really...
You’ll probably stay in at home if mobility is challenged. It may be safer to sit inside and watch than participate. For little man, I stock up on craft kits, board games, films (I can recommend Peppa’s Cold Winter Day and Peanuts movie for little man) and books. Reading to little man is a great time filler. Ask others to buy children’s magazines. They usually have stories, colouring and sticker fun. Also make sure you have lots of food and drink supplies in to help with the staying in.
When travelling, I make sure I have food, drink, toilet stuff (she wee/incontinence pads, travel potty, toilet roll, baby wipes, carrier bag to put things in, gross but true!), things to entertain little man and help with going out in the cold weather (extra clothes, tissues - the cold brings out a runny nose! - and a blanket). We’ve been putting little man’s blanket on the radiator to place on him during car journeys.
As I’ve fallen a few times, the safest option is staying at home but it isn’t always viable. Slippy snow and ice is super scary for those who have fallen and use mobility aids (my walking stick doesn’t work well in snow!) I didn’t realise you can buy an ice grip for your stick. Other mobility aids like walkers, rollators, scooters or wheelchairs probably don’t work well in the wintery weather, so make sure it’s safe and charge your scooter! Remember you’re no Torvell or Dean! I also wear shoes I know that can help e.g. walking shoes or shoe grips.
It’s OK to feel like you can’t be bothered. But little man is so excited. He’s seen snow in the last few weeks and there was lots of “go outside Mummy”. It’s heart breaking when you have little energy to lift your bum off the sofa, let alone play in the snow. Give yourself a break, if you can. Check weather forecasts and save your energy if you need to go out. I’ve realised that asking for help is not a sign of weakness – so family and friends had fun in the snow with little man, giving me a chance to recharge.
Asking for help helps you to rest but there is the realisation that you can’t play in the snow like yesteryear. Emotions come to a head. Grief. Anger. Frustration. Envy. Social media has a lot to answer for that. Don’t get me wrong it’s lovely to see what others are doing on their snowy days but it’s a reminder that you have limited mobility. I’ve cried a lot recently because I want to be the one to play in the snow with little man. In the interim, try not to be alone, hook up with others whether it’s friends who can come to you, speaking to social media contacts (I asked my local MS Society group for best shoe grips recommendations) and plan for brighter days (I’m thinking of summer holidays).
In the interim, snuggle down, grab a blanket, hot chocolate and biscuits, which may not be great for the waist line but I’m still scoffing! Be like a Dane until the bad weather goes away. Oh we just changed the clocks, so Spring is on the way - honest!
Stay safe everyone! I’d love to know your tips?
You can let Joanne know your top tips, read more or follow Joanne on her blog or search for 'poorlyparents' on Facebook or @Mummywithmsjmhc on Twitter.
On Sunday 25 March, nearly 3,000 runners took to the streets of Colchester in Essex to complete the Colchester Half Marathon. The day promised an ‘amazing mass-participation event bringing together local runners, businesses and the community’. It didn’t disappoint. With lots of excitement the runners set off at 9am sharp!
Taking part in the race and running especially for MS-UK were occupational therapy masters students from the University of Essex, Tess, Claire and Lauren. Lauren and Claire both have personal experience with multiple sclerosis (MS).
Commenting before the race, Claire said: ‘My neighbour was diagnosed three years ago and it has driven me to fundraise for this charity, I know it will make him proud.’
Neil Dulieu, a Teaching Assistant at Mersea Island School, has been running semi-seriously for around five years. His wife Amanda has secondary progressive MS and he took part in this year’s Colchester Half Marathon as part of his bigger fundraising plans.
Neil explained: ‘At the end of last year I decided I really wanted to set myself a challenge for 2018 to raise money for MS. 2018km in 2018 just came to me one night, the numbers worked well, it equated to averaging a full marathon distance every week and meant I could start on 1st January and incredibly finish the challenge on my birthday, 1st December. I tend to run most days before or after school and then often run the Colchester or Mersea Park Runs on a Saturday morning to finish my week off (with one rest day on a Sunday).’
The chosen charity partners for this year’s Colchester Half Marathon were Essex & Herts Air Ambulance who will receive 75% of the proceeds and MS-UK who will receive 25%.
Jill Purcell, Fundraising Manager from MS-UK said: ‘It was great to see the turn out on Sunday and the atmosphere was buzzing. We had Myles the MS-UK mascot dancing away and spurring everyone on, as well as volunteers at water stations, marshalling and in the stadium supporting all of the runners.
‘We at MS-UK are so proud of everyone who took part and would like to thank you all for your time, dedication and effort in raising money for people with MS. The charity relies on the generous support of our fundraisers to make our work possible, and we’re delighted that we’ll be able to continue supporting people affected by multiple sclerosis.’
To see all of the great pictures taken on the day, visit the MS-UK Facebook page. Don’t forget to ‘like’ and ‘follow’ our page while you’re there!
Because we can. That’s why we run…for those that can’t. Multiple sclerosis (MS) has had a great impact on both our families. Fran’s cousin has suffered very badly for over 30 years but was only diagnosed 8 years ago, and is now effectively immobile. It’s heartbreaking to see her this way. My mum was diagnosed in 2016. We are still coming to terms with her reducing mobility; as each month passes that little bit more is taken away from her. My parents sold their lovely home last summer, which they so dearly loved, and have moved into a new home much more suitable to her needs, and without stairs! My cousin, at 38, was also diagnosed at the same time. So we took the decision to do something special and to raise funds towards helping out those close to our hearts, and many others, inflicted by this horrible disease.
We always say we’d do one. And kept saying it for years and years. Now, well past our prime and in our naughty forties, the marathon word finally became reality. No more excuses; it was time to make some serious cash for an MS charity. Fran had already secretly entered both of us into the Virgin Money London Marathon 2017 ballot, and the first I knew about it was when ‘a lucky you’ package came through the post congratulating me on my place. First time of asking as well! So with my place confirmed, MS-UK kindly gave a Gold Bond place to Fran with the plan being to run together and raise money to help those with MS. We did all sorts to raise funds including charity bucket collections, bake-offs, sweep stakes and organising quiz nights. We had fantastic support from family and friends via donations to our charity page, and as we requested, many gave a donation in lieu of our birthday and Christmas presents. Our son even asked for the same - top lad!
Training was ‘interesting’ and certainly much more time consuming and hard going than we ever predicted. The MS-UK Marathon Facebook page was so useful for tips and encouragement. It was inspiring to see how others were tackling the same challenges, supporting and encouraging each other daily. It was also, oddly enough, quite comforting to see that others found it hard going too…we weren’t alone!
The Big Day
For those of you that have already run it, you will already know the crowds are just amazing; the shouts of constant support really hits you. Literally every mile is packed with people spurring you on. You certainly won’t need those motivating iPod beats that accompanied you on your training routes, and besides, you won’t be able to hear it! The buzz and the relief you get from crossing that line makes all that hard work worth it. The time doesn’t matter, it really doesn’t. Who cares? The achievement; that’s what counts! Ride that wave, and you may even find you go faster than you planned. Fran managed a brilliant ‘Good for Age Time’, which meant…
…automatic entry next year! Wouldn’t waste that now. So despite saying we’d only run one, we are now doing it together all over again in 2018, and again for this wonderful charity. However, one massive difference stands out this time round: the weather. We had it great training up to and on the day for the London marathon in 2017; this time round it has been so pants!!! But that’ll make this years that little bit more special.
Another? Best ask us after we cross that line. Personally, I fancy a sponsored pub crawl!
You can find out more and sponsor this amazing couple on their fundraising page. Good luck guys!
Most people with MS recognise the expertise of their doctors and nurses, but somehow feel that there doesn’t seem to be enough time to cover all the things that matter to them and sometimes important things get missed. A group of people with MS and healthcare professionals are working together to improve clinic visits.
The group is called MS in the 21st Century. Many countries are represented and we learn from each other. We meet up a few times a year. We work to improve MS health care by understanding each other’s priorities and modelling partnership between people with MS and health professionals.
We have recently published a paper in a scientific journal which includes authors who have MS and also authors who are health professionals. This is a ground breaking project. The authors have discussed the priorities they have in an MS clinic visit and agreed a list of unmet needs from the viewpoints of both people with MS and health professionals. We have developed the paper jointly. As well as highlighting our different perspectives, we have also made practical recommendations. Our aim is to bridge the gaps between what people with MS and health professionals expect and provide.
We hope that the publication of this paper will be a key step towards ensuring that MS care addresses the expectations, priorities and needs of people with MS. It is vital that we work together to support people with MS to be fully engaged in managing their own condition. The paper emphasises the perspective of people with MS and how essential their involvement is in high-quality MS care.
From my own work as a neuropsychologist, I am particularly concerned to increase understanding of the psychological impact of MS, including cognition, mental health and wellbeing. We need to increase awareness of how these impacts can be recognised and successfully addressed.
Birgit Bauer, another author and a person with MS says, ‘As a person with MS, I cannot overstate the significance of this publication. I am hopeful patients everywhere and their healthcare teams will recognise the need for better communication and partnership with the ultimate goal of more effective and personalised care.’
"Unmet needs, burden of treatment, and patient engagement in multiple sclerosis: a combined perspective from the MS in the 21st Century Steering Group" is published in the peer reviewed journal, Multiple Sclerosis and Related Disorders (MSARD), and is freely available online now. DOI: 10.1016/j.msard.2017.11.013
If you are a person with MS, or are close to someone who has MS, and you are interested to help Professor Dawn Langdon’s team in their work on psychological aspects of MS, please email firstname.lastname@example.org.
I moved to London in 2016 and I wanted to get involved with and volunteer for multiple sclerosis (MS) charities.
I was diagnosed with MS in 2013 and I wanted to do something positive. I knew the Virgin Money London Marathon was around the corner, I wanted to be involved with the event. I contacted MS-UK and they were more than happy to take me on as a volunteer, I assisted the runners to make their way to the post-race reception.
Since then I have been asked to volunteer at a couple of other events, cheering on the participants for events such as the Royal Parks Half and RideLondon.
The MS-UK team are great and very welcoming, it gives me a chance to do something positive and meet new people.
Now in 2018, I have signed up to run for them in the Virgin Money London Marathon, I was even asked to do a little talk about my marathon experiences.
I would highly recommend joining their volunteer team!
On 19 March, BBC Breakfast featured a short piece on a HSCT trial with relapsing remitting multiple sclerosis (RRMS) patients taking place in Sheffield. It provoked a strong reaction from the MS community and a lot of questions, so we’ve tried to answer some of them…
What is it and how does it work?
A variety of clinics and hospitals across the world, including Sheffield and London are trialling and practicing HSCT treatment.
This particular Hematopoietic stem cell transplantation (HSCT) trial, which has been taking place in Sheffield, America, Sweden and Brazil, involves the patient having stem cells extracted from their bone marrow. Next they are given chemotherapy treatment, which strips back their immune system to almost that of a baby and then the healthy stem cells are transplanted back into their body.
The trial was set up to test the efficacy of HSCT treatment versus FDA approved MS drugs, such as interferon, glatiramer acetate, mitoxantrone, natalizumab, fingolimod, or tecfidera.
Just over 100 patients have taken part in the trial, in hospitals in Chicago, Sheffield, Uppsala in Sweden and Sao Paulo in Brazil.
Scientists conducting the research claim they have made a significant breakthrough with this type of treatment in patients with highly active relapsing remitting multiple sclerosis (RRMS).
Patients received either HSCT or drug treatment. After one year, only one relapse occurred among the stem cell group compared with 39 in the drug group.
After an average follow-up of three years, the transplants had failed in three out of 52 patients (6%), compared with 30 of 50 (60%) in the control group.
Those in the transplant group experienced a reduction in disability, whereas symptoms worsened in the drug group.
The interim results were released at the annual meeting of the European Society for Bone and Marrow Transplantation in Lisbon.
Click here to read the study’s abstract - Hematopoietic Stem Cell Therapy for Patients With Inflammatory Multiple Sclerosis Failing Alternate Approved Therapy: A Randomized Study.
What is the inclusion criteria?
Participants have to be aged 18-55 and have a clinically defined MS diagnosis using the revised McDonald criteria.
Their Expanded Disability Status Score (EDSS) should be 2.0 to 6.0.
The must show inflammatory disease despite treatment with standard disease modifying therapy, including at least six months of interferon or copaxone.
Inflammatory disease is defined based on both MRI (gadolinium enhancing lesions) and clinical activity (acute relapses *treated with IV or oral high dose corticosteroids and prescribed by a neurologist). Minimum disease activity required for failure is defined as: a) two or more *steroid treated clinical relapses with documented new objective signs on neurological examination documented by a neurologist within the year prior to the study, or b) one *steroid treated clinical relapse within the year prior to study and evidence on MRI of active inflammation (i.e., gadolinium enhancement) within the last 12 months on an occasion separate from the clinical relapse (three months before or after the clinical relapse).
A steroid treated relapse will include a relapse that was severe enough to justify treatment but due to patient intolerance of steroids, or a history of non-response to steroids, they were offered but not used.
More information about inclusion and exclusion criteria can be found here.
Can I get on the trial?
Unfortunately you cannot. This is because although the trial is still active they are not recruiting.
Will it really be available on the NHS within a few months?
Dr Susan Kohlhaas, director of research at the MS Society, said the stem cell transplant HSCT "will soon be recognised as an established treatment in England”, but will it?
While this is a phase III trial testing the efficacy of the HSCT, which will be incredibly significant when it comes to gaining licensing approval, the treatment has only been formally assessed for use in the NHS within clinical trials.
There will also be a few more hoops to jump through, such as gaining approval from NICE (The National Institute for Health and Care Excellence). Although NICE does now have a fast track criteria, which enables certain drugs and treatments with the right evidence to pass through the system much quicker than we have seen in the past. Cost will almost definitely be a deciding factor. HSCT comes with a price tag of £30,000, but there are already some approved DMTs with a similar costing available to patients, so this could help justify the expenditure, especially if the treatment can halt the MS for a long period of time. We should also be mindful that a higher price point can often lead to drugs and treatments being allocated to minorities with strict criteria, rather than being rolled out for everyone.
When does the trial end?
The trial is still ongoing and its estimated end date is December 2018.
Is it really a “game changer”?
Well, it’s a great step forward for people with RRMS and it does mean there is a potential highly-successful treatment that could halt MS in its tracks on the horizon.
However, HSCT treatment in secondary and primary progressive patients doesn’t tend to be as effective and you tend to see less improvement in disability because the nerve damage by this point has become permanent.
There are still a number of questions we do not have the answer to, such as how long does the treatment last?
But maybe the biggest questions of all is if MS is genetic, the person will still have the same gene and what’s to stop the gene being triggered again and the MS returning if we do not know the true cause?
This time last year I was getting ready for my first ‘Virtuosity in aid of MS-UK’ gig, which took place on 11 June 2017. It was a small but appreciative crowd that came along to enjoy a night of jazz at the Colchester Arts Centre, and this year I am planning on hosting a similar event, this time pulling in some blues favourites.
As a client of MS-UK, I know the good that the charity does to support people like me living with multiple sclerosis. I know the power of music to unite people and do good. I was a musician myself, so the worst effect of having MS is that I can no longer play any instruments. This is hard to accept, but I am determined to channel it into something positive and to keep my love of music alive. That’s where the idea for ‘Virtuosity’ came from.
The choice of musicians for this Virtuosity event was based on getting an international artist supported by a major local band and soloist so that the local acts would attract bums on seats for the main feature.
Geoff Achison and the Souldiggers just happened to be on tour in the UK at Easter and I know of them because of a Facebook link from Sam Kelly (the drummer of the Souldiggers). Sam is a professional session drummer and plays at West London jam sessions (when not on tour himself), where I used to go to play bass guitar when working as a software contractor there - until MS took away the control of my hands!
The genre was chosen by Geoff’s style of souly/blues/roots music. ‘It is blues Jim - but not as you may know it!’ - is a comment from Geoff’s web site which sums it up perfectly. I hope this will make it much more popular with the audience than pure jazz but still add that special touch created when playing excellent original material with such talented session musicians.
The support artists - of which there are many excellent ones in this part of the UK - were chosen from my past experience of playing blues based music around Essex. Tim Aves and Wolfpack are legends locally and the addition of the incredibly talented Martin McNeill on vocals, slide guitar and harmonica completes the line-up.
I have been overwhelmed with the support I’ve received from the local community. Colchester Arts Centre has once again hosted the event, and media students from the Colchester Institute are even coming along to record and edit the performance. I’m hoping it’s a brilliant night for everyone involved.
There are still tickets available for the gig, which is happening this Saturday 31 March...you can buy them online from the Colchester Arts Centre website. I hope to see you there!
My team mate Paul Reynolds and I decided to compete in this year’s Devizes to Westminster International Canoe Race to raise awareness and funds for two charities, one of which is MS-UK. We are team Forget Me Not! We both have friends and family living with multiple sclerosis (MS), so we have seen first-hand the challenges it can bring to someone’s life and that is why we decided to set our very own challenge. We will be paddling 125 miles in a Canadian Canoe or C2, while portaging 77 times over the Easter weekend, from Devizes in Wiltshire to Westminster Bridge in London. It seemed like the perfect challenge to help us raise money for and awareness of MS.
The Devizes to Westminster International Canoe Race has been held annually over the Easter weekend since 1948 and this year is its 70th anniversary.
The first 52 miles are along the Kennet and Avon Canal to Reading, followed by 55 miles along the River Thames to Teddington. The final 17 mile section is on the tidal portion of the Thames. The race is a severe test of skill, physical and mental stamina and planning, with the unpredictable British weather adding a further challenge.
We’ve been doing lots of training and I will say that rolling an open C2 into the freezing River Thames as part of our capsize drill, when you’re nice and warm wearing your multiple layers, does take your breath away!
Our target is to raise £10,000, so if you would like to donate to our efforts please visit our Team Forget me Not for MS-UK fundraising page.
Here at MS-UK, we are always growing, and I’m really pleased to say that this month we have welcomed four new members of staff to the team!
Jo is our new Trusts and Foundations Fundraiser. MS-UK is really lucky to receive funding from grants and foundations across the UK, and Jo is here to make sure we can secure even more funding!
Lucy is our new Community Fundraiser, and will be looking after the amazing people who take on a challenge in aid of MS-UK…this could be a bake sale or a skydive. Lucy is here to make sure every #TeamPurple fundraising experience is brilliant from start to finish!
Angela and Alice join the MS-UK Helpline team as MS Advisors. Our helpline supports thousands of people affected by multiple sclerosis every year, and Angela and Alice will be on hand to answer any MS queries.
I hope you’ll get to know them all in the coming months!
Sarah Wright, General Manager
Hi, my name is Matt. I’m 23 years old, I live in Marlborough, Wiltshire and I am working for the year as a Teaching Assistant and Sports Coach at St Francis Prep school, Pewsey, before I head back to the University of Gloucestershire in September to complete a ‘PGCE in Primary Education’.
I originally started my fundraising for MS charities back when I was just 17 years old by doing the Reading Half Marathon. Then I decided to really try all I could to make a difference to the lives of people who live with multiple sclerosis and pushed myself to get a place on behalf of MS-UK to run in the 2014 Virgin Money London Marathon.
When I found out that I was able to run for MS-UK I was absolutely overwhelmed with excitement and pride; as I knew even then what great work MS-UK did and the difference they made to those around the UK suffering with both RR and PPMS.
Although I was undeniably nervous at the task I had set myself and challenge I had ahead of me, I knew that compared to the struggle that those suffering from MS go through day-in, day-out, I now had an opportunity to do what I could to help.
The main reason that I have such a strong interest and passion for trying to help those who suffer from MS is because it is a disease that personally affected my family.
‘Ten years ago my mum, Lorraine, was diagnosed was Primary Progressive MS. However, where in the depths of such a horrible revelation it would be easy for a person to bow down to a disease and to think that their race had been run, my mum decided to stand strong and fight PPMS head on.’
My mum is a true inspiration for me and my family, and is constantly looking for a cure or new research that could help her win this fight once and for all. Whether its researching non-biased information and advice on how to deal with Primary Progressive MS; using a hyperbaric oxygen chamber to aid in recovery; or just this year making a trip over to Serbia to ‘SwissMedica Clinic’ to undergo stem cell treatment as the next step in her fight to recovery.
‘Ten years on and my mum is still fighting.’
Having seen first-hand the struggle that those suffering from PPMS go through, I am inspired every single day by my mum and strive to do whatever I can to help in her and the thousands of others in her situation to beat this disease.
‘The reason that I continue to fundraise for MS-UK is because I know first-hand the difference that their support can make to those living with MS, and whilst much progress has been made in combating the disease, there is still a way to go.’
A real highlight in my fundraising career, which showed just how generous people can be to one another, was during my third year of university. I was the University of Gloucestershire 1st XI Men’s Hockey Captain as well as the ‘Charity and Community Engagement Officer’. I decided that we could use our last league hockey match of the season as an opportunity to raise money for a cause we held dear, as well as leaving a legacy behind to future years of fundraising and charity work throughout the university.
And so I got in touch with Swansea University and pitched the idea. I was overwhelmed by the response from them and their supporters as well as other clubs at our university that came to watch the game; people who I didn’t know, who had now found this common ground with of ‘wanting to make a difference to people’s lives’. And so we managed to raises around £500 that was then split between MS-UK and Meningitis Trust Foundation on the day.
‘It really proved to me that people who different walks of life can come together a make a positive difference.’
So, what is my latest challenge? Well, I had hoped it would be the Bath Half Marathon this February…however, the weather had other ideas! It was such a shame that the event was cancelled, but I really wanted to earn the generous donations on my fundraising page, so I organised a 25k run at Marlborough Fitness and Performance Centre (MFPC), my local gym.
On 11 March I finished the run in 1hour 56mins which I was very pleased with and EVEN more pleasingly I managed to smash my target of raising £500 and so far have raised £1,198!!!!!
Thank you to every single person who has sponsored me, you have helped me make a real difference supporting MS-UK!