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.
Alice Bardwell is looking for mobility scooter users to take part in research – can you help?
Hi there, at Proteus Research we are looking for participants to help with a research study about mobility scooters. The object is to better understand the needs of users, their expectations and the potential for design development.
Participants will be asked to complete a diary for one week, noting the ways in which they use their scooter day to day. The diary will be sent via post and a stamped addressed envelope provided.
There is also a possibility that they will be asked to take part in a one hour phone or Zoom interview in order to discuss their usage and provide feedback on the pros and cons of their machine and any improvements they would like to see.
For each part of the study (the diary and the interview) participants will receive a cash payment of £100 as a thank you for their time and help.
This project is being conducted on behalf of a well-known automotive manufacturer looking to enter the mobility scooter market with a new model.
The study commences on November 2 with the diary. The interview part will take place around the middle of November. We'll let you know after the first stage is complete if we would like you to take part in an interview.
Proteus Research is an independent market research company based in UK and a member of the Market Research Society. We are bound by the industry Code of Conduct under which all data collected is treated confidentially and the anonymity of participants protected.
If you would like more information about our company please visit our website at www.proteusresearch.eu alternatively you can contact the Market Research Society on 0500 396 999 who will confirm our status as a legitimate market research agency.
If you would like to take part please contact Alice on the details below
07879 483 041
Amanda has been smashing her fitness goals with MS-UK's online exercise classes
I thoroughly enjoy MS-UK’s live exercise classes via Zoom and Facebook. Pre-lockdown, I attended their Colchester-based exercise classes in person and I missed them. Initially, the Wellness Coaches provided recorded exercise videos on the MS-UK YouTube channel, which I enjoyed and followed, but I was even more delighted when the team said they would be offering live classes via Zoom and then Facebook for people with multiple sclerosis (MS).
Exercising with others and feeling part of a community is always more fun and more motivating than exercising alone. I’m so thankful for the support and inspiration and I feel so much better physically and mentally when I have made time for exercise and know that I have done my very best.
Fun for all
Alan’s classes are fun and very easy to participate in! They are largely based around seated exercise and are therefore accessible to all of us, despite our different levels of restrictions. The class content provides lots of variety and progression exercises for those who are more able. I find that I am able to progress more in the upper body classes than the lower body classes, which I find much more challenging, but other MSers may find the opposite! Alan always reminds us to work to our own level – work as hard as we can but manage our fatigue level and never work through pain.
It’s easy to use technology to access the classes. The advantage with the Facebook Live classes is that they are recorded so you do not have to watch them live to participate, although I do if I can, because I like the sense of engagement. However, I have often watched and followed them later in the day if I was busy, or re-watched them and repeated the exercises at other times, to practise a specific exercise group or fill a gap in my diary. I like the flexibility that the delivery of the classes offers.
Specifically with the Facebook live classes, it’s amazing to see that MS-UK is able to reach MSers all around the world. We are very lucky to have the support we get from MS-UK and it’s fantastic to see that others may benefit when they don’t necessarily have such resources in their home countries. It’s great to extend the reach of the MS community too... as I’m exercising, I like to think that others around the world are doing the exact same thing and we’re “fighting the MS fight” together.
It is widely acknowledged that regular exercise is important in maintaining optimum health, but what do you do when you have a condition that can give you ‘bad’ days and leave you feeling like exercise is the last thing on your mind?
For people with multiple sclerosis (MS), finding the right type of exercise is important as MS affects people differently. There is no one type of exercise recommended for people with MS, it’s entirely down to what you enjoy and what you are able to do as an individual and if you enjoy it, you will want to continue and hopefully do more!
Don’t worry if you have never done any exercise before or it’s been years since you last did anything. Slow and steady is the best way to build up your stamina. Getting your endorphins rushing around your system will soon have you feeling better about things.
There is a wealth of choice when it comes to exercise and there has also been a huge rise in people taking up wheelchair sports – there are thousands of different opportunities for you (and your family) to get involved in. Work with your MS and how it affects you, to find an activity that you love
If you are lucky enough to live near to an MS therapy centre, why not make use of the specialised equipment or exercise classes that they may have on offer? One particular piece of equipment that is a real support to people with mobility problems is a Thera bike.
Thera bikes have a motor that helps tired muscles to keep moving, even when you don’t feel like you can do it for yourself. To find your nearest MS therapy centre see our Choices booklet, MS Therapy centres for details of all centres across the UK and check out the services they offer. Download MS Therapy Centres Booklet
Exercise and MS fatigue
Fatigue is a common symptom of MS. It might sound counterintuitive, but moderate exercise has been shown to improve resistance to fatigue. Clearly, it’s best not to exercise through fatigue or to try to battle on when it would be better to rest, but in the longer term, adding some exercise into your daily life can pay dividends.
The National Institution for Care Excellence (NICE) published guidelines in October 2014 for the management of MS. In these guidelines NICE advised aerobic, balance and stretching exercises, including yoga may be helpful in treating MS-related fatigue.
Sometimes exercise can bring challenges for people with MS. Some people find that their MS symptoms can become temporarily worse during exercise because they are affected by the increase in body temperature. If you are affected by heat, take precautions to keep yourself as cool as possible – always carry a bottle of icy water with you and take rest breaks when needed. If outside, keep to shaded areas. You can also put a hand towel in the freezer and drape this around your neck. The neck has lots of blood vessels, so keeping them cool will keep you cooler overall. If working out in a room or gym, see if you can have a fan working near you to keep the air cool.
Swimming for MS
Swimming can be especially helpful because your bodyweight is supported by the water and the water helps to stabilise someone with balance problems. Weaker muscles can operate in this environment and will strengthen from the resistance created as you move through the water. As swimming involves many muscles in your body, it can also help to increase coordination.
There are now many more swimming pools and leisure centres offering special sessions for people with disabilities or those who require particular help and it may be worth trying one of these sessions first, if you need to. You could contact your local council to see what they have to offer in your area.
Pilates for MS
Pilates is an all-round stretching and strengthening regime, designed to improve muscle strength, posture and flexibility. Pilates is a type of exercise programme based on correct body alignment. The focus is on coordination, moving properly and core strength. Good breathing patterns are also important.
Pilates is a very popular choice of exercise and incorporates elements of yoga, stretching and muscle strengthening using the body’s own weight.
Tai Chi for MS
Tai Chi is meditation with movement. It concentrates on relaxation and correct breathing, while performing graceful, circular, flowing exercises, sometimes to music. It is especially helpful for people with MS who may not have the stamina to exercise at a high speed and another advantage is that you can exercise without overheating.
Tai Chi can help in MS by improving balance, combating fatigue and giving you more energy. It can also help with spasms, muscle strengthening and is very relaxing. Regular practice can also help with depression and maintaining a calm and more serene inner state. Tai Chi is a good method of self-development, focusing the mind and giving you a greater sense of wellbeing.
Yoga for MS
Yoga is about a unity of mind and body. It is as much about your breathing and your outlook on life as it is about postures. It can calm the mind and energise the body, as well as helping to counter-act stress, fatigue and depression.
It has a good effect on the endocrine glands, circulatory and respiratory systems and improves wellbeing. Yoga also tones the digestive organs and other glands in the body such as the thyroid and adrenals.
Like Pilates, yoga is suitable for all ages, and all fitness levels. Yoga is a low-impact, gentle form of exercise, but tends to be floor-based so consideration must be given as whether this is suitable for you.
For more advice on exercising with multiple sclerosis, download our Exercises Choices booklet which includes exercises to try safely at home Download Exercises Choices Booklet
Laura from MS-UK’s Helpline has the lowdown on this year’s flu vaccine
The flu vaccine is not a live virus and therefore cannot cause you to have the illness. There are different types of flu vaccine and you will be offered the one that is more effective for you, depending on your age. Sometimes people may feel an ache in their arm, but if you experience cold or flu symptoms, then the chances are it was already in your system.
This year it is seen as even more important to vaccinate against the flu due to Covid-19. If Covid-19 cases continue to rise, higher cases of flu could potentially overwhelm NHS services.
People with MS are more at risk of becoming unwell with flu. Having the vaccine not only reduces the risk of getting flu but, if you do catch it, it is likely you will have a much milder case.
You may have already been contacted by your GP surgery to book in for a flu jab. If not, then contact them to make an appointment. If you are worried about visiting the GP surgery in the current climate, perhaps speak to them to see if they are able to make a home visit.
If you are a carer of a person with MS, you are also eligible for a free flu vaccine.
If you are having a relapse, you’ve recently taken steroids for a relapse or are taking certain disease-modifying therapies then you may need to discuss having a flu vaccine with your medical team. Precautions may be needed in these cases.
Specialist MS neurologist, Professor Gavin Giovannoni, says on his research blog that he is hopeful the behavioural changes we have made around Covid-19 will also have a positive impact on the figures for flu. Social distancing, wearing masks, and washing and sanitising our hands much more will help to prevent the spread of flu.
One thing he highlights is that if you are a severely immunosuppressed person with MS (you have recently been treated with alemtuzumab or HSCT), and have small children, please make sure they do not have the live nasal flu vaccine at school. This could expose you to flu via the live vaccine.
For anyone worried about having the flu vaccine, Professor Giovannoni also says that it is the most studied vaccine in people with MS and it has been shown to be safe, and it does not trigger relapses and/or MRI activity.
Lots of people choose to manage their MS holistically through diet and lifestyle
A well-balanced, healthy diet is important for everybody to maintain optimum health. Many people diagnosed with multiple sclerosis (MS) have questions about whether changes to their diet and nutrition can assist in symptom management. Although not conclusively proven, between 50% and 75% of people with MS have made changes to their diet.
Although there is little existing research looking at diet in MS, a recent study using information from nearly 7,000 people with MS from North America, has concluded that a healthy lifestyle and diet are associated with lesser disability and symptom accumulation. The data from this study shows a convincing observational link between diet and disability.
Several diets have been created with MS in mind. Similar themes run through these diets and most involve reducing saturated fats, taking supplements and restricting or eliminating food groups. It is always suggested that you consult your GP, neurology specialist or MS nurse before starting to take any supplements or making any changes to your diet. Below you will find an overview of a selection of the more popular diets and additional information about MS specific dietary research and supplements.
The Swank diet
The Swank diet recommends a reduction in consumption of saturated and unsaturated fat which can be found in meat (particularly red meat) and processed foods, dairy and products containing dairy. The diet recommends reducing the amounts of saturated fat to less than 15 grams a day and having 20-50 grams a day of unsaturated fat (such as olive and flaxseed oils). The Swank diet also recommends cod liver oil and vitamin supplements.
The Overcoming MS diet
Drawing on the Swank research and learning, Professor George Jelinek’s approach focuses on a largely plant-based, very low saturated fat diet, with omega 3 supplements in the form of coldpressed flaxseed oil. Professor Jelinek was diagnosed with MS in 1999. His mother also had MS. The Overcoming Multiple Sclerosis (OMS) diet has been in existence for over 15 years, and is constantly being worked on as more evidence is gathered.
The Wahls protocol
This diet is based on key elements of the paleolithic (or paleo) diet. A paleolithic diet is based on foods similar to those that would have been eaten during the paleolithic era. A paleo diet typically includes lean meats, fish, fruits, vegetables, nuts and seeds – foods that could be obtained by hunting and gathering.
The Wahls protocol eliminates sugar, processed foods, grains (wheat, oats, rice), soy, dairy, eggs, potatoes, tomatoes and legumes (beans and lentils) and increases the intake of grass fed meat, fish, fruit, vegetables (especially green leafy vegetables) and plenty of fat from animal and plant sources, (especially omega-3 fatty acids). The Wahls diet is quite prescriptive about the amounts of certain types of food to eat. The protocol says that a follower should eat six to nine cups of non-starchy vegetables a day and four ounces of protein (fish, specifically twice a week).
The Best Bet diet
This diet is based on the theory that an autoimmune process is ignited by undigested food proteins escaping through the gut wall into the circulatory system. The immune system sees these proteins as invaders and starts to attack. This is referred to as ‘leaky gut syndrome’.
The Best Bet diet focuses on four main areas; foods to avoid, foods to eat in moderation, foods to increase and the use of supplements. The Best Bet diet says that stopping, or restricting the consumption of foods that have a molecular structure similar to myelin, reduces the autoimmune response.
Read our Diets and Supplements Choices booklet for further information on this topic. You can download it from our website, or order a printed copy. Find out more
Revitalise Holidays is inviting carers and their offering the chance to win a seven-day respite break as part of its #CareForCarers campaign
Revitalise wants to thank all home carers for their dedication and endurance and is calling on them to come forward and tell their lockdown and beyond stories.
The Revitalise 500 Competition wants to hear all about the highs and lows of 2020 – just write up your experiences in no more than 500 words, making it as descriptive as you can. The piece can take the form of either a story or a poem.
The winning entry will be chosen by a panel of celebrity judges, including BBC Radio 2 DJ, Mark Radcliffe, actress and presenter Samantha Renke, Endeavour actress, Carol Royle and Paralympic Gold Medalist, David Smith MBE. Second and third place entries will be awarded £250 and £150 Revitalise vouchers respectively, these can be put towards your next holiday or spent at the centres.
Choose your preferred format
1. A Short Story of up to 500 words or
2. Poem of between 250 and 500 words
Create a masterpiece that tells your story of lockdown and beyond.
Email your entry to email@example.com Revitalise will accept a spoken word recording from those with different abilities. Or post it to 212 Business Design Centre, 52 Upper Street, London, N1 0QH.
Submit your entry before midnight on Friday 6 November. Don’t forget to include your full name and address, your email or contact number and the names of those in your family you would like to mention. Also include a photo of you so they can put a face to the name.
Revitalise Holidays is the UK’s largest specialist provider of respite holidays with care and activities for families that have a seriously ill or disabled loved one. We cater for over 150 conditions including Alzheimers, Huntington’s, multiple sclerosis, Motor Neurone Disease, Cerebral Palsy and Paraplegia.
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.
Across the UK, there are a range of mental health charities and organisations offering support and information. Here we have listed some well-known organisations which you may find useful.
For a longer list of organisations that specialise in certain areas, visit the NHS website.
The NHS urgent mental health helplines provide 24-hour advice and support for anyone living in England. You can find a helpline number using the NHS website.
If you feel you or someone else is at risk of serious harm or injury, please call 999.
The Mental Health Foundation aims to help people understand, protect and maintain their mental health. The offer community and peer programmes, undertake research, give advice to people affected by mental health conditions and campaign for change.
Mind provides advice and support to empower anyone experiencing a mental health problem. They also campaign to improve services, raise awareness and promote understanding. They run an Infoline, a Legal Line and produce publications about a wide range of mental health issues.
Across the UK, Mind have a network of independent local Minds that are run by local people, for local people. They provide support like advocacy, counselling, housing advice and more.
Rethink Mental Illness offer a network of 140 local groups and services and they offer expert information via their website. They also campaign to make sure everyone affected by severe mental illness has a good quality of life.
Samaritans offer a 24-hour helpline that anyone can contact if they are struggling with their mental health. You can call them any time, 365 days a year, on 116 123 for free. Samaritans also accept email enquiries, letters and have a self-help app on their website.
SANE provides emotional support, guidance and information to anyone affected by mental illness, including families, friends and carers.
You can read our Choices booklet about MS and mental health online today or order a printed copy.
Saturday 10 October 2020 is World Mental Health Day. Here at MS-UK we are reflecting on the findings of our Loneliness and Isolation Report, hoping to bring these important issues into the light.
We are also sharing mental health resources live throughout the day on our Facebook page (join us on Facebook between 10am - 3pm).
There are a number of health professionals who can help to support you if you are experiencing mental health issues.
This is often a good starting point if you are feeling anxious, having trouble sleeping or beginning to worry about your mental wellbeing. It can be difficult to start this conversation but your GP will be able to offer advice and refer you on to mental health services if they feel it is needed. Your GP may mention the IAPT programme, which stands for 'Improving Access to Psychological Therapies. You can find out more about IAPT on the NHS website.
MS nurses are familiar with multiple sclerosis (MS) in a way that means they can spot signs of low mood or depression, sometimes before you notice them yourself. Talk to your MS nurse if you have any worries and they will be able to signpost you or refer you on to other support.
Counsellors do not offer advice and will not tell you what to do but can help you to talk about your experiences to make it easier to find a way forward. MS is an unpredictable condition and learning to live with this uncertainty can be challenging. Counsellors can help you to explore how MS may be affecting your wellbeing and how you are adapting emotionally.
MS-UK Counselling is a telephone service that is available to anyone with a diagnosis of MS. You can register online for MS-UK Counselling or ask a health professional to refer you. If you would like to try face-to-face counselling, check if your local MS Therapy Centre or local MS Society group offers this. You can also search for a therapist through the BACP website.
You can read our Choices booklet about MS and mental health online today or order a printed copy.