I just wanted to wish you, on behalf of myself and the whole team here at MS-UK, a very Merry Christmas and a Happy New Year.
This year we have been proud to commemorate our 25th anniversary of supporting people affected by multiple sclerosis.
We have seen our newest service, MS-UK Counselling, grow rapidly as more and more people seek confidential counselling that is grounded in a knowledge of living life with MS.
Our helpline has answered thousands of enquiries and our Choices leaflets have been downloaded over 70,000 times from our website. We now have over 20 different titles, encompassing a wide range of topics, from diet and nutrition through to complementary therapies.
Our magazine, New Pathways, landed on doormats every other month, connecting thousands of people with the wider MS community. And our wellness centre, Josephs Court, has extended its range of complementary therapies and social activities to better support people affected by MS in our local community.
Next year, we will be launching our new strategy. Until then, thank you for your support in 2018. We couldn’t have done it without you.
Amy Woolf, CEO
Holidays are coming, so here's an update about our opening hours over the next few weeks...
The MS-UK office will be closed from 5pm on Friday 21 December until 9am on Wednesday 02 January 2019.
Josephs Court, our Wellness Centre, will be open during these times:
Josephs Court will then reopen at 9am on Wednesday 02 January 2019.
Fatigue is one of the most common symptoms of multiple sclerosis (MS) and it can often feel overwhelming during the cold and dark winter months. However, with the help of the MS community, we’ve gathered together a few tips and techniques that may help you through!
Firstly, though it may seem counter-intuitive, moderate exercise has been shown to improve resistance to fatigue. Now, we are by no means suggesting that you run a marathon, but a small amount of regular walking, swimming, or yoga, among many other options, could make a positive difference in the longer term. For more information on exercise, please see our Choices leaflet.
Looking after your mental wellbeing is also important. Activities like meditation, mindfulness and relaxation, as well as just being aware of the need to factor in time for rest, are tips that the MS community have shared with us in relation to managing symptoms. This self-aware approach is particularly useful when it comes to fatigue because taking the time to plan activities and daily patterns, as well as breaking down tasks into manageable chunks, can really make things less daunting on a day-to-day basis.
It may seem like a bit of cliché, but we can hardly talk about the usefulness of exercise without also talking about healthy eating. It is well known that eating a balanced diet helps people to maintain good health and feel their best, while poor diet can lead to fatigue. This is no less true when it comes to MS. Supplements, including B12, Co-enzyme Q10, Vitamin D and Omega 3, can also contribute to reducing fatigue, though we suggest speaking to your GP or neurologist before taking anything new. For more information, please see our Choices leaflets on Diet and nutrition and Vitamin D.
Other therapies that some people with MS have found to be helpful include acupuncture, oxygen therapy, and Action Potential Simulation (APS) therapy. Oxygen therapy is widely used across the UK in the many MS therapy centres and those who regularly attend sessions have found that it can greatly improve fatigue levels. To find your nearest therapy centre, use our website.
You can read and download all of our Choices leaflets on our website.
‘After missing the chance to run the Virgin Money London Marathon through the ballot, I decided that for 2019 I would fundraise for a charity close to my heart, MS-UK. I'm pushing hard, taking on multiple challenges and races between now and the marathon. So far, fundraising is going ok.
‘My Dad was diagnosed with MS when I was a child. I still remember the day he sat me down and told me. I had no idea how bad MS was or how it was going to change our lives and yet it still tore me apart.
‘Sitting here now typing this still breaks my heart and brings a tear to my eye.
‘For the past 20+ years, I've seen MS take my father away from me. At first, it was only really fatigue that was noticeable and a few days where he wasn't great on his legs.
‘As time went on, he lost the ability to drive and eventually couldn't even walk or feed himself.
‘MS has also damaged his brain, wiping out his short term memory and his ability to talk. This has been the biggest impact on me, not being able to speak to him, ask him questions and all the things a son should be able to ask his father.
‘I regret not making the most of the last good years with him while I still had the chance.
My Mum cares for my Dad 24/7 which really takes its toll on her, she's stubborn though and does everything she can for him.
I chose MS-UK and the London Marathon to show my support for my family and to raise as many funds for such a supportive MS charity that gets much of its funding through the London Marathon charity places.’
You can find out more and make a donation on Gavin's JustGiving page.
It feels a little that people with multiple sclerosis (MS) are stuck between a rock and hard place when it comes to the weather. After the extremely hot summer we’ve just experienced, many people had issues with the heat, and now winter is just around the corner bringing problems and anxieties of its own.
MS symptoms can be exacerbated as the temperature drops. It is not known exactly why the cold has a negative effect on people with MS symptoms. Some of the symptoms that can be exacerbated by the cold weather are:
One additional issue may be the shorter days and not being exposed to as much direct sunlight, therefore not getting as much natural vitamin D as in summer months. The lack of sunlight, the shortening of the days and the difficulties getting out and about can also be contributing factors towards negative mental health with potentially worsening anxiety and depression.
Like many other aspects of living with MS, a little planning and forethought can go a long way when coping with activities in the winter.
If you want to chat about any aspects of living with multiple sclerosis, the MS-UK Helpline team are here to help. Just call us on 0800 783 0518, email us or use our live web chat service to get in touch.
I am delighted to say that our Annual Review 2017 is now published. This booklet is our way to thank our supporters and celebrate our success in a public way, and I hope you enjoy reading it.
Our vision is a world where anyone affected by multiple sclerosis (MS) can access the information and support they need to make their own decisions. Since 1993 we have led the way in promoting choice, tackling taboos and remaining independently funded. We are built on a foundation of listening and acting according to the needs of people affected by MS. I am thrilled to see that this is reflected in our work from last year.
We are driven by our values, guiding principles that inform every aspect of our work. In 2017 we were able to bring these values to life, and our services supported thousands of people. Every service is shaped by people affected by MS. By listening to people, we are able to offer services that are truly community led.
Thank you to every single person who has shared their voice with MS-UK or supported us so on our journey so far.
Our work would not be possible without the support of so many people.
Sleep is so important to both physical and mental wellbeing. It helps our bodies recharge and our minds settle. For eight hours at the end of each day we leave the hustle and bustle of the outside world behind heavy eyelids and transport ourselves to the blissful land of nod. But climbing into bed and falling asleep isn't always easy, particularly if the mattress is too lumpy, or springy, or harder than concrete.
So when we were recently asked about what to look for in a mattress from the perspective of someone living with multiple sclerosis (MS), we decided to explore...
'I’m looking for some advice for my mum who's recently diagnosed and struggling. I’m trying to find the best type of mattress. Any recommendations or pointers for what I need to be looking for?'
Sleep comfort will directly affect how we sleep. There are many products to consider to help keep your mum comfortable and help with any symptomatic issues she may be having during the night.
If heat is a trigger or an issue for symptoms then there are mattresses on the market that specifically have cooling and protective surfaces. You can also buy breathable ‘toppers/pads’ to put over an existing mattress that can aid with cooling which may help.
You may also want to think about the surface of the mattress itself. Softer mattresses, especially ones made of memory foam, may not be the best choice for someone who has restricted ability to move around in bed. These types of mattresses tend to shape to the body and dip under pressure, which could potentially be an issue when trying to get out of bed for some people.
Latex foam mattresses may be worth exploring. They tend to be naturally hypoallergenic and antibacterial by their very nature. Latex foam mattresses will ‘move with your movements’ and are less likely to cause the issues that memory foam may cause.
For some people with MS their priority will be looking at options to protect the mattress due to continence issues. In these instances a good quality waterproof mattress protector is suggested.
For those that spend a lot or all of their time in bed and may be at risk of pressure sores and could need an air circulating mattress or postural support it is suggested that an assessment of need is gained via the NHS to see what is best suited to each individual.
Living Made Easy is a good, independent and impartial resource for disability specific products. They have pressure relief mattresses, elevators, bed wedges waterproof covers and much more.
Depending on whether or not your mum has any physical impairments, or the need for specialist mattresses will very much effect the choices you will be making.
We just wanted to let you know about this important source of information that our MS-UK Helpline team regularly uses to support the multiple sclerosis (MS) community.
The Disability Rights Handbook is a guide to benefits and services for anyone with a disability, their families, carers and advisers. It contains a wealth of information relating to the benefits system, as well as social care services and help for carers. This guide will be relevant to many people living with MS.
Clients who use the MS-UK Helpline have let us know how valuable the information provided by our advisors is and, since a lot of that information can be found in the Disability Rights Handbook, we wanted to share it with you. If you would like to buy your own copy, you can do so on the Disability Rights UK website store.
We wanted to let you know this was available to pre-order as last year’s handbook sold out in quite quickly!
As always, though, our MS advisors are available to listen to you, talk things through with you and keep giving you as much helpful information and support as possible.
Many people with MS are experiencing a temporary worsening of symptoms during this current heatwave. You might feel fatigued, or experience an increase in pain, or feel cognitive symptoms are worse. A change in body temperature can also give rise to Uhthoff’s Sign – causing blurred vision. See Visual Symptoms Choices leaflet.
Although uncomfortable, such symptoms are temporary and will resolve when the body is cooled down.
Air conditioning can be very nice but if that isn’t available then a fan in every room is a second best. Items such as Kool-Ties and Cooling Vests can be helpful. The Kool-Ties work for up to three days by cooling the whole body and particularly the blood flowing to the carotid arteries. Cooling Vests have special cooling crystals incorporated into the material and are soaked in cold water, holding the temperature for a substantial period of time.
Other strategies to help keep cool in hot weather include taking regular cold drinks, wrapping a damp towel around your neck, using ice in a tray of water in front of fan to create an air-conditioning effect.
We have been using an online live chat system for some time now and it has shown to be popular. Certainly for those who may not feel in a position to pick up the telephone for whatever reason, and for those who would like a more instant response than email. It also means we have been able to chat to people abroad too, when they may have found it difficult to find support.
Our Digital Officer, John, has now developed a nice little function whereby a pop up appears on every page of our website to show people that the live chat facility is available. This has certainly increased the amount of web chats we have received which is great as it has meant we have reached out to more people affected by MS.
If we are engaged - either chatting to someone already, or perhaps on the telephone - then a message can be left via email and we will get back to you as soon as we can.
We look forward to hearing from you,
Laura, Kim and Ryan
The MS-UK Helpline team