We have been very busy on the MS-UK Helpline, not only answering all your calls, emails and web chats but writing new publications so you can be as informed as possible when it comes to managing your multiple sclerosis (MS).
Spasms and spasticity is a subject that you, the MS community, asked us to write about. Symptoms that are commonly experienced but not always really known what they are, what the difference is, or the many ways in which they can be managed.
This booklet will really help people to understand these symptoms, what causes them and the effects they can have. The booklet explains a variety of self-management techniques, as well as information on physiotherapy, different treatment options, complementary therapies and more.
We surveyed the MS community about how they deal with their spasms and/or spasticity and we had great feedback. Thank you to those who shared their experiences. We have included a number of quotes within the booklet which really help to bring it to life. We do this with all our booklets because we can all learn from other people’s experiences. What works for one person will almost certainly help another.
You can download our new booklet from our website here. It is also available in plain text format. You can also order a hard copy and we will post this to you as soon as we are able. Please order via our website here.
To take a look at our full range of Choices booklets visit our website here. If you can’t find what you are looking for then please do contact our helpline and we will be happy to speak to you. We are here to provide unbiased information and professional support. We also provide emotional support should you just need someone to talk to.
We are here to help you to live a happier and healthier life.
Laura and Ryan
When I was diagnosed with multiple sclerosis (MS) at 23, I was so scared and lonely and in quite a dark place. It was a huge deal for me – I’d only been married for a year and was at the beginning of my career as a nurse. My parents took it very badly, and it was a big, big change for me.
Early on in my journey, I was prescribed antidepressants. They help keep me on an even keel.
Having MS, there are times when I feel very lonely. It doesn’t matter how many people I have around me, I can still feel very alone. Unless they have it too, your loved ones and friends don’t really understand what you’re going through.
Old friends worry about meeting up with me. They wonder how bad I will be – whether I’ll be able to walk or whether I’ll be in a wheelchair.
I do spend a lot of time at home alone, but my little dog helps me enormously. She’s like my shadow and my best friend. Having her, with her unconditional love, has helped me so much. Pets help so much when you’re lonely.
Knowing the MS-UK Helpline is there when I need to talk makes me feel supported.
This year MS-UK's Christmas appeal is raising money to support our helpline, which is here to support people living with MS when they need it most. Our research shows that 71% of people living with MS feel lonely or isolated because of their condition. By working together with MS-UK, you can help these people feel less alone this Christmas.
Did you know that 71% of people living with multiple sclerosis (MS) feel lonely or isolated because of their condition? By working together with MS-UK, you can help these people feel less alone this Christmas.
MS affects around 130,000 people in the UK and 2.3 million people worldwide. Living with a long-term condition that people do not understand can make it hard to stay connected. It can be difficult to maintain independence and often people struggle to reach out and ask for the support they need as a result. This is why services like the MS-UK Helpline are so essential. But it wouldn’t exist without people like you.
MS-UK saw a 44% increase in calls to our helpline in the first month of lockdown alone and we continue to provide the MS community with essential information and emotional support when they need it most. As the Christmas period approaches, demand will be even higher and we need your support to ensure we can be here for as many people affected by MS as possible.
Our research has revealed that people with MS are often too scared to speak out about loneliness for fear of being viewed as a burden. People tell us they feel like a “viewer of the world, not a part of it,” and have “no one to share, communicate and laugh with, turn to, speak to and share worries with.” But with your continued help, MS-UK can be there for anyone who calls our Helpline to listen and provide them with much-needed emotional support.
This Christmas, by donating to the MS-UK Helpline you’ll help ensure no one has to face MS alone.
Thank you to everyone in the MS-UK community who got involved with our World Mental Health Day event on Saturday 10 October. We just wanted to bring all the resources together in one handy place, so anyone can access them in the future.
Here's a list of links for the resources. If you would like any support, please get in touch. MS-UK is here for anyone affected by multiple sclerosis (MS) and you can reach us on 0800 783 0518 or by contacting us via our online web form.
This year we commemorated World Mental Health Day by sharing the findings of our Loneliness and Isolation Report. You can find out more about this piece of research by reading the full report below or visiting the web page.
Our helpline has been busy writing and putting together new publications this year to extend our range of Choices booklets. We asked the multiple sclerosis (MS) community for suggested subjects to write about, subjects that you, people affected by MS, wanted to read about and gain more understanding. Cognition was a popular subject.
Cognitive difficulties are experienced by around 50 per cent of people living with MS. Some will only experience mild, more manageable symptoms, whereas others will experience symptoms to a larger degree.
Speaking about cognition and how it can impact a person and those around them can be a difficult subject to discuss. It can be hard to acknowledge that a person’s cognitive abilities are not as they once were.
We wanted to make it easier to understand the different ways in which cognitive difficulties can impact and to provide a wealth of information on how to manage it including tips from those who currently live with the symptom.
You can download our Cognition booklet from our website here. It is also available in plain text format. You can also order a hard copy and we will post this to you as soon as we are able. Please order via our website here.
All our Choices booklets are sent to our virtual insights panel (VIP) before publishing to gain feedback from people living with or affected by MS. The feedback we received on the Cognition booklet was very positive and included quotes such as:
‘I cannot express how pleased I am that you have brought this leaflet to my attention. I will be highlighting this to other people with MS.’
‘This leaflet is excellent, I feel very strongly that people do not see MS as having cognitive issues only physical ones.’
‘It will be a useful document for those of us (me included) who have issues with cognition.’
It is really helpful for us to receive this feedback to make sure we are producing what is really needed by the MS community. If you would like to join our panel please sign up here.
We will continue to review our current publications and also write new ones when required. We have another new booklet to be published soon too, all about spasms and spasticity. Keep a check on our website for when that comes. If you have any suggestions for other subjects that we are yet to cover please let us know. Email email@example.com We always welcome suggestions.
Laura & Ryan
MS-UK Helpline Click here to download your free Choices booklet
For Carers Week, Laura and Ryan from MS-UK’s Helpline explain what support is available for you
The theme of Carers Week this year is making caring visible. So often carers go about their day and others would not even realise what they carry on their shoulders. They may be out doing the shopping, yet worrying about the person at home they care for, all too often not thinking about themselves. Carers often don’t even identify with the label of being a ‘carer’.
It is so important that the role of the carer is recognised and also that they know where to go for support. We want carers to know there are organisations they can call when they need to chat or ask questions, there are support groups (online and in the community) that are just for them and there are people and organisations out there that care for carers.
Our Helpline would like to let all carers know they can call us when they need to. We are here for you, as well as the person living with multiple sclerosis (MS). We can provide an understanding listening ear, be at the end of the telephone or source you supportive information.
The kind of information we have sourced for carers has been things like
The role of an unpaid carer can be complex and we can help to work through issues at your pace, signposting to more specific organisations where it’s needed.
Our Helpline can be contacted by our freephone number 0800 783 0518, or via email and webchat.
Other great organisations who support carers are
The Carers Trust help to raise awareness of unpaid carers in the UK. You can use their website to search for carer services in your area.
Carers UK offer advice, information and support trough an expert telephone advice and support service. They help connect people through carers’ groups
Please get in touch, we are here if you need us.
Laura and Ryan
Early summer so far has seen some glorius weather so far but, whilst some may bask in the fact that we’d normally have to pay to go on holiday to get this heat, others may have feelings on the opposite end of the spectrum. People who are affected by multiple sclerosis (MS) have widely differing symptoms when it comes to heat sensitivity. Here are some tips to help you in the hot weather.
1 ) Think about your clothing
Whilst wearing shorts or loose clothing are obvious ways of keeping cool, changing your choice of footwear ican make a big difference, too. Wearing trainers or closed-off shoes can affect your whole body in hot weather, as there are lots of pulse points around your feet and ankles. Liberate your feet with appropriate sandals to help them breathe, or alternatively, dunking your feet in some cool water when you take off your shoes to cool off!
2) Chilling your sheets before bed
Despite being only a short-term solution, chilling your sheets in a sealed bag in the fridge for a couple of hours before you go to sleep can help you feel cooler, or try the freezer for faster results. Although your own body heat will warm up the sheets fairly quickly, it can help your body cool in that period, which in turn could help you drift off to sleep easier.
3) While you’re out of the house, close your curtains
When you leave your curtains open, it allows sunlight to come through and essentially heat the area like a greenhouse. When closed, the curtains will prevent this greenhouse effect beyond your window sill and keep your house much cooler. It can make a huge difference, especially if your house faces the sun.
4) Unplug electricals that aren’t in use
Plug sockets that are filled with electronics that you aren’t using will generate more heat. If the plugs become too hot, especially in a heatwave, it increases the chance of a fire hazard as well. So it may be a good idea to lose the unnecessary electricals at this time of year!
5) Invest in Kool-Ties or Cooling Vests
Kool-Ties are simply something you tie around your neck, can work for up to three days, and cool the whole body through cooling your neck. Cooling Vests have special cooling crystals incorporated into the material which are soaked in cold water, then can hold the temperature for a substantial period of time. You can even get versions for dogs!
Other ways to help keep cool in this hot weather can be taking regular cold drinks and wrapping a cold damp towel around your neck.
I wanted to let you know that MS-UK staff are now working remotely to ensure that we can keep as many of our services available to support people living with multiple sclerosis (MS) as possible.
Due to a high volume of calls, responses from our helpline service may be delayed. However, if there is no one available to take your call please leave information about your query, email address and telephone number and a Helpline Information Officer will get back to you as soon as possible. Please note that it is likely that we will be able to respond to emails faster than telephone messages and that you may receive responses outside of office hours. To contact the MS-UK Helpline email firstname.lastname@example.org or call 0800 783 0518.
The MS-UK Counselling service will continue to run as normal and is unaffected. To register for MS-UK Counselling visit www.ms-uk.org/counselling.
If you attend Josephs Court, we will be ensuring you hear from us regularly and have created some exercise videos to support your activity at home. You can find them on our YouTube channel.
We appreciate your support and wish you all well during this challenging time.
Amy Woolf, CEO of MS-UK
The MS-UK Helpline team have been working really hard to answer all of your questions around how coronavirus will affect your multiple sclerosis (MS). Here are some of your frequently asked questions answered.
I’m taking a disease-modifying drug for my MS, does this leave my immune system compromised?
The answer to this question depends on which MS drug you are taking. Some will leave you with a weakened immune system and others won’t. The MS Society published some useful guidance on which drugs leave you most susceptible. Click here to read more. For more information about coronavirus and disease-modifying therapies in MS the Association of British Neurologists (ABN) has also released some guidance.
I have MS but do not take any immunosuppressant drugs, how will coronavirus affect me?
For the first time yesterday, the PM announced that people with MS should be practising social distancing. Social distancing encourages those that can to work from home, avoid large public gatherings and public transport, and avoid anyone displaying symptoms. Click here for more information.
Someone in my house is living with multiple sclerosis. What can I do to protect them?
You can also practise social distancing with them to reduce your chances of contracting the virus and bringing it home. Taking it one step further, the person living with MS in your house could self isolate in one room away from the rest of the household to further limit their chances of contracting the virus. Click here to see the guidance on social distancing and self-isolation.
For the latest information on coronavirus, visit www.gov.uk/government/topical-events/coronavirus-covid-19-uk-government-response.
We have received some calls to our helpline about the recent news of COVID-19 and concerns about the impact it may have for people with multiple sclerosis (MS).
There is limited information and advice available specifically relating to MS. If you have MS, the risk of developing the virus is the same as the general population. This risk is currently considered low in the UK.
Generally, this virus can cause more severe symptoms in people with weakened immune systems, older people, and those with long-term conditions like diabetes, cancer and chronic lung disease. Having MS does not mean your immune system is weakened.
However, some disease modifying drugs supress the immune system. These include Lemtrada, Ocrevus, Tysabri, Mavenclad and Gilenya. A side effect of these drugs is increased risk of infection.
Professor Gavin Giovannoni has written a blog post for the Barts MS blog which talks about the risk factors of these drugs in more detail. You can read more here:
As with other health issues, such as flu, cold, bladder infection, or any other viral issues, you can have a temporary worsening of your MS symptoms. Symptoms will likely settle down once you have recovered from the infection/virus.
Any concerns, we would suggest speaking with your MS team. As things stand it is not being recommended to stop and DMT treatment – always speak to a health professional in the first instance.
To avoid catching or spreading the virus, the advice from the NHS is as follows:
If you would like to chat through any concerns our helpline is available Monday to Friday, 9am – 5pm. Call 0800 783 0518.
The Helpline team