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'Just because you are on medication doesn’t mean you can’t breastfeed'

Posted on: July 28 2021

World Breastfeeding Week (1-7 August) is just around the corner and we have a piece from Elissa Benson, National Childbirth Trust, Breastfeeding Counsellor and Chartered Neuro Physio talks breastfeeding and MS. 

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Elissa Benson, Breastfeeding Counsellor
and Chartered Neuro Physio

There is a lot of information already out there in the public domain that can inform a mother when it comes to making a decision about breastfeeding and there is no reason why a mother with multiple sclerosis (MS) shouldn’t breastfeed if she chooses to. Her MS isn’t going to affect her milk supply and she isn’t going to transmit it to the baby. It’s also worth noting that some research shows that MS mothers who exclusively breastfeed are almost half as likely to suffer a postpartum relapse.

A matter of medication?

Some medications are not intended for use when breastfeeding. The best thing to do is consult with your neurologist or MS nurse, who will be able to advise you based on your MS. Some women opt to delay using medication so they can breastfeed, or some women feel the medication allows them to look after their baby and that’s the priority for them. Some mothers express milk in advance, so they can feed their baby while taking an intensive five day course of steroids. They do have to continue to express throughout those five days to maintain their milk flow and to be able to feed baby afterwards. It’s a very individual choice, it depends on the medication you’re taking and the stage of your condition at that moment in time. Just because you are on medication doesn’t mean you can’t breastfeed, but there will be decisions to make.

To find out more information about which medications are, or are not compatible with breastfeeding by visiting the Breastfeeding Network website.

Don’t be too hard on yourself

Under normal circumstances mothers have to make all kinds of decisions about breastfeeding, and for some mothers with MS their options are more limited, so actually dealing with how you feel about that is really important. That’s where we, as breastfeeding counsellors, come in. We can help mothers explore their options and how they feel about it. It’s an aspect that can often be lost because when you are dealing with the practicalities you can forget to deal with feelings.

Minimise stress

Being a new mother is stressful for anyone and if you have concerns over feeding your baby, that can add to the stress. It’s part of our role to help mothers manage their situation so that it can be less stressful and doesn’t make them worse. We all know that stress can exacerbate MS.

Find the right position to feed your baby breastfeeding.JPG

A further challenge may be a woman’s physical ability to position themselves properly and support their baby’s weight through a feed. Some women might have a loss of core control, which can be caused by MS but also because they have just been pregnant. Putting together these factors could limit their postural control which might affect the positions they are able to effectively use to feed their baby.

Similarly, arm strength or tone may be an issue. Do they have the arm strength to support their baby? Do they have tonal issues that might effect that? And again, that is why some individual support from someone experienced would be really useful.

Laid back breastfeeding, using a baby led approach may be a good option to explore.  Basically instead of the mother trying to attach the baby, they just let the baby do it themselves because they are pre-programmed to do it. There are lots of different positions to try, but if you are able to access that individual support it can help you find a position that works for you and your baby.

Dealing with fatigue

Fatigue is a big issue for any new mother, but having MS can make it a lot worse. Having had a baby, you are entering a new phase in your life where you are going to be sleep deprived and your normal sleep pattern disrupted, meanwhile your body is also trying to recover from pregnancy and birth. Managing fatigue is very important, but it is also worth knowing that the hormones that are released when you’re breastfeeding are the ones that help your body return to its pre-pregnancy state.

Often women tend to view feeding baby as a chore and therefore tiring, but actually if you can get a good position for you and baby, if you can get them to latch themselves, you can use it as an opportunity to sit and rest. New-borns feed 8-12 times every 24 hours, so it’s much better if mothers associate feeding baby with resting. This way of looking at it helps with the physiological part of fatigue and then it’s just about the practicalities – making sure you’ve poured yourself a drink, you’ve got your phone and the remote control – and then you can stay sat down. It’s also about managing the support network you have around you, so you can prioritise breastfeeding in those early days.

Managing night feeds could mean that mum goes to bed and when baby needs feeding, their partner, mother or whoever is there to support, gets up and brings the baby to mum, she feeds and then they put settle the baby back down. That way mum doesn’t even need to move, so it’s a really practical solution to this sort of issue.

Information

To discuss your breastfeeding options and find an NCT drop-in session, you can call the NCT Breastfeeding Counsellors Helpline on 0300 330 0700, or visit www.nct.org.uk

Further reading

Breastfeeding positions

Drugs in breast milk - is it safe? 

 

'I was always thinking about my MS inspired design ideas'

Posted on: July 26 2021

Kirsty is a designer who received her diagnosis of multiple sclerosis (MS) whilst completing her degree. Here, she shares her story, the ways she coped with her diagnosis and how it has influenced her work. Kirsty Stevens Artist Image.jpg

Please tell us a bit about your diagnosis – what were your symptoms and what happened?

I was in my third year of a Jewellery and Metalwork Honours Degree at Duncan of Jordanstone Art School in Dundee when I had my first symptoms. My left eye became painful to move left and right and my vision in that eye deteriorated quite rapidly until I couldn’t see anything. Also my gait was way off, I couldn’t walk in a straight line and I was so tired. These symptoms escalated and I was admitted to hospital, I didn’t really know what was going on, I was in a dream like state, which I am quite thankful for as I can’t even remember having a lumbar puncture! MS was mentioned as a possibility at this time but the doctors seemed pretty sure it was another condition called A.D.E.M, which is like MS but it just hits you once and never comes back, so I didn’t even consider it would be MS! I was then diagnosed about six months later after experiencing slightly blurred vision, twitchy nerves and having a couple of MRI scans. Even though MS had been mentioned I really didn’t expect it, so it came as a massive shock!

Tell us about your design work – what do you make and how did you come by the idea to do this? 

I took a year out of my studies when I was diagnosed to come to terms with it all. During that year, I learned that living with MS was manageable - just because I had been given this ‘chronically ill’ label it didn’t mean my life was going to change instantly! I also learned that MS was so misunderstood, yes I was still learning about it myself, but people didn’t know anything about it or had misconceptions about it. So, when I returned to uni I decided to use MS as the inspiration for my final years' work. I wanted to make MS visible through my degree show pieces and share my experiences of living with MS in a bold way.

My work had such a great response from the public and my peers I knew I had to continue raising MS awareness this way as it opens conversations about MS in a new and innovative way. I developed my creative business, Charcot years later as I ran off to London after art school for a few years to intern for designers and design labels which was a great experience, but I was always thinking about my MS inspired design ideas. Named after the ‘Father of Neurology’ Jean-Martin Charcot, ‘Charcot’ is my surface pattern design label where I use my own MRI scans and lesions shapes, the damaged caused by MS, to design prints and patterns which are then printed or etched on to various materials to make this invisible illness visible in the most fabulous way.

Has your work improved your experience of living with MS?

My work has definitely improved my experience of living with MS as at first, I was embarrassed to tell people that I had MS as it made them feel awkward! But now I have no trouble telling people and sharing how I have used it as a positive and raise awareness in an exciting way!

What kind of feedback have you had for your work?

I have received incredible feedback for my work, it really has been more than I could have ever imagined! I have the continued support from the MS community, which means so much and I love how it engages people that don’t have MS and that might not even know what it is, I really love taking it to new audiences! My work has also taken me to China to represent Dundee UNESCO City of design at the first ever Design Week in Shenzhen and at the same time I was announced as the first Design Champion for V&A Dundee, the first design museum in Scotland, which was an incredible honour! I have also leased work internationally and collaborated with pharma and digital imaging companies.

How was lockdown for you, what changed and how did you cope? Kirsty Stevens Head shot 2.jpg

Lockdown has been interesting!? I work from a home studio so it wasn’t all that different but my years plans and potential work opportunities had to be scrapped, but the time has allowed me to focus on myself and even re-evaluate what Charcot is all about! I was supposed to be starting a new medication when it all kicked off but that was postponed, which I was thankful for as it is an immunosuppressant drug, which would weaken my immune system which isn’t ideal amid a pandemic! Also over the past few months I have noticed more symptoms and my legs are pretty wonky! So, I am being as active as possible to regain strength and feel more like myself! The online leg work outs from MS UK, have been great!

What advice would you give to someone who is newly diagnosed?

I would say, yes, it is a scary and daunting thing to be told but it doesn’t mean that’s it for you! Cliched as it sounds take each day as it comes, do what works for you and enjoy every bit! It has taken me my 13 years of living with MS to realise this, so just go for it!

Hot topic - heat sensitivity

Posted on: July 21 2021

The heat is on for new cooling drug, says Feature Writer and MSer Ian Cook. AAAAAAian.jpg

If you suffer from heat sensitivity you will know it can be a big summer holiday spoiler and although other multiple sclerosis (MS) symptoms often get talked about, heat sensitivity doesn’t get the coverage it deserves. As a sufferer I find this fact surprising because the link between heat and MS has been known about for 130 years. Back in 1890 Wilhelm Uhthoff, a German neuro-ophthalmologist, noticed that some of his MS patients’ visual problems got worse after exercising and getting hot. This later became known as Uhthoff’s phenomenon.

Then, in the 20th century the diagnosis of MS involved something called the ‘hot bath test’ where patients were lowered into a bath of hot water to see if their condition worsened when they got hot. If it did they would be diagnosed with MS.

Sweat connection

More recently, in the early years of the 21st century, researchers tried to identify the exact mechanism through which heat sensitivity has an effect in MS. The first thing looked at was the fact that MSers overheat because we lose our ability to sweat as MS progresses. Normally adults can sweat between two and four litres per hour or 10–14 litres per day and sweat cools the skin as it vaporises in a process known as ‘evaporative cooling’. But in MS things don’t work so well. Research carried out in 2009 at Oulu University Hospital in Finland looked at sweating in 29 MS patients and compared these patients to 15 people unaffected by MS. The research found that MS patients sweated markedly less than people without the condition. After just 10 minutes of heating, sweating was significantly lower in the forehead, feet and legs of MS patients than in those of those who didn’t have MS, meaning MSers were overheating as they were unable to benefit from evaporative cooling.

Sweating in simple terms is a two-way process. Temperature receptors in the skin send messages through the nervous system to a part of the brain known as the hypothalamus where heat-sensitive nerve cells are located. These cells in return send messages to millions of sweat glands in the skin to
release sweat causing evaporative cooling. For a message to travel between the hypothalamus and the sweat glands the nervous system must carry these messages efficiently.

One of the key chemical elements involved in this process of efficient communication is sodium. As axons in the central nervous system heat up, the amount of sodium moving into the nerve increases in a process known as sodium loading. However in MS this process goes into overdrive and excessive
sodium makes it harder for messages to be sent efficiently up and down nerves to and from the sweat glands. This results in less sweating and overheating. 

Dr Mark Baker of Queen Mary, University of London is currently researching ‘sodium loading’ in axons. Dr Baker is looking for a drug or drugs that could target MS heat sensitivity by reducing the amount of sodium travelling into nerve cells when the temperature increases, allowing messages to muscles to be sent more securely and therefore better communication with the sweat glands and more sweating. iStock-992133438.jpg

Drug hope

One drug that is believed could have this effect is bumetanide. This drug is already used to reduce extra fluid in the body (oedema) caused by conditions such as heart failure, liver disease, and kidney disease so we know it’s safe to use. It is thought bumetanide might be effective in tackling heat
sensitivity because it reduces the amount of sodium entering cells. Dr Baker has been leading research into this area but says that bumetanide comes with major problems. It is poor at getting into the brain and nervous system and thus poor for accessing damaged axons. A side effect of bumetanide is
increased urination – something that would be unwelcome by many of us MSers who suffer urinary problems. Dr Baker says these facts are leading him to look for other drugs.

“We need to investigate other compounds that have much better brain penetration and we have plans to do this. We also think there may be another molecular mechanism causing sodium loading that is not affected by bumetanide and this is one of the things we are working on.

“Exploring this avenue may allow better pharmacological control of temperature-dependent symptoms, and in the longer term could provide a route to neuroprotection. So right far down the line neuroprotection is a massively exciting idea that means we may be able to protect axons and neurons from the worst effects of neuro-inflammatory disease and slow progression by reducing the energy expenditure in axons as well.”

Although it is early days in Dr Baker’s research, it is hoped that continuing work on heat sensitivity could lead to other drugs which would not have the side effects of bumetanide and may even have a neuroprotective role too. Until that day happens, MSers will remain reliant on the tried and trusted techniques for keeping cool such as fans, jackets or sprays. I, for one, will be hoping that it’s not too hot this summer, and I will of course also be using a fan, a spray and possibly other cooling aids in case, like last year, we have another long hot summer/ Meanwhile, the heat is on in the search for a new cooling drug.

This article originally featured in issue 122 of New Pathways magazine. For the latest treatment, symptom information and real-life stories, subscribe to New Pathways by clicking here

Diet, exercise, meditation

Posted on: July 20 2021

by Martin Baum Martin 24.5.21.jpg

Recently, I was invited to be a contributor for a Q&A article about staying active with MS. Although I have blogged extensively about living life not MS – an issue which connects positively with the many MSers who follow me - this was the first time I had specifically been asked my thoughts about exercise and exercising.

In so far as it goes for one man and his stick, my idea of a physical workout is being taken to the local park by my wife/carer as regularly as my health and the weather dictates. What else was there for me to contribute? Well, as it turned out, quite a lot more than I had initially given myself credit for and this is how.

Aside from my limited bodily activity, I try to do the best I can. It is all about keeping to a regular routine, pretty much the same as for anyone else going to a gym. As any MSer can attest, with something as demotivating as this energy-sapping, soul-destroying illness, it is just so easy not to bother.  Some say 'What is the point? I cannot do it. I will not do it. I have MS!'

However, I can and do because there is a point. It is called structure, setting goals. Mine was taking a daily walk of a modest distance which inadvertently, led to an unexpected change in my diet. It didn’t just happen. It wasn’t MS, it was me. Eating too many of the wrong things was causing me to gain weight, making me breathless sometimes and causing a dip in my energy levels. I knew I had to do something.

I call it the Rocket Science diet or, rather, it isn’t. Whilst I wasn’t a great consumer of 'treats' per se, such as bread, biscuits, crisps, chocolate or alcohol for example, I decided to eliminate everything except fish, meat, fruit, vegetables and water from my diet on an ongoing trial basis. Has it been easy? Well, yes, given that this was something I felt was necessary in my limited capacity for taking responsibility for my health and welfare.  It’s also given yet more structure to my life. More goals to achieve.

However, there was something else which I unintentionally neglected to include in the article - meditation, which was something I had already been doing for some time and was inextricably a major part of my daily structure. 

MS is a sponge which just keeps absorbing and can leave MSers vulnerable, both physically and emotionally. I am no exception. Meditation, though, helps me achieve mental clarity, focus and, to quote Pink Floyd, “comfortably numb”. Since I have begun practising meditation, I believe I can stay one step ahead of MS or, at the very least, keep abreast of it.

Whilst I accept the combined holy trinity of diet, exercise and meditation is not for everyone, I passionately believe that doing something is better than nothing be it diet, exercise, or meditation. Take your pick. Think of it as living life on your terms instead of being at the behest of the life limiting conditions set down by MS.

Failure is Not an Option is a phrase associated with the Apollo 13 Moon landing mission and it should be something for all MSers to aspire to. By doing something is one less thing for a carer, physio, therapist, or neurologist to take responsibility for. To put it more succinctly, if an MSer cannot at least try to do the best they can for themselves, then why should anyone else?

It’s your MS, own it.

Curious about our Peer Pods? Join one today!

Posted on: July 19 2021

Have you thought about joining one of MS-UK's Peer Pods? Here, Peer Support Co-ordinator Vicky shares updates on this growing service for the multiple sclerosis (MS) community. Vicky.jpg

By now, I am hoping that you have all heard about our new service and the themed Peer Pods that we have been running since March. You may even already have attended one or more of our sessions and enjoyed meeting others online. At MS-UK, we are dedicated to letting the voices of the MS community inform the work we do – so I am pleased to announce that we will be launching three new Peer Pods, based on what our Virtual Insights Panel or VIP (made up of people living with MS) told us they would like to see.

These are:

We understand that there are some symptoms and issues that can be difficult to talk about, particularly when they are around sensitive subjects, so we hope that by having these specific groups, people will feel more comfortable discussing the topics that really matter to them.

We also know that 'newly diagnosed' is not necessarily just those that have been diagnosed in the last month or year, or even the last five years. We understand that many people when first diagnosed can spend several years not engaging with health services or the 'MS community' and so this pod is for all those that may only now, for whatever reason, be finally feeling ready to talk.

Unlike our current pods, these sessions will have no particular theme, which means that anything can be a topic of conversation and a chance to share stories and learn from each other.

We know from experience what great benefits there are to be gained from speaking with others that are living with similar challenges, and how this can help people to feel less isolated and alone – regardless of whether you have a good support network of family and friends.

But don’t just take my word for it! Here is what some of the attendees of our pods have said so far:

'Thank you so much for your support. I really enjoyed the zoom get together yesterday, what a fantastic group of people! It was very interesting hearing everyone’s story and I’d really like to join you again in a couple of weeks.' 

'I am so happy that I’ve met you, your positivity is infectious, thank you so much!'

'Thanks so much Vicky, I will pop in again next week. I really benefitted from the laughs & sharing experiences.'

'That was lovely! I nearly didn’t join as I was having a bad day, but so glad I did! Thank you so much for setting up the Peer Pods Vicky, it’s like a massive breath of fresh air seeing you all and chatting so freely!'

'So good to chat, ladies. It felt totally ok being able to share with each other in such a brilliant safe space'

'You have all helped me when I was at my lowest and loneliest.'

It needn’t stop there either! We are always happy to hear from you, so if you have any suggestions for a Peer Pod that you would like to see in the future – or if you like the idea of volunteering with us and facilitating a pod yourself – then please do get in touch!

Fancy joining one of our current or future Peer Pods? Simply contact us by emailing peersupport@ms-uk.org

I look forward to ‘seeing’ you soon!

Making sure I exercise - Jon's story

Posted on: July 14 2021

Jon Dean has always been a fan of exercise and sport. When he recieved his multiple sclerosis (MS) diagnosis, he thought he could no longer do the things he loved. Here's his story... Jon Dean.jpg

Exercise, they say it’s good for you. Throw MS into the mix and it can feel like an impossible task at times. I was always a keen footballer in my teens, I wasn’t particularly good but I loved to play and worked hard to get better. As a goalkeeper, I loved making saves. MS has made my hands constantly numb and one of the worse things for a goalkeeper is to lose their grip. So despite a few attempts to play since I was diagnosed 11 years ago, the gloves and boots will have to remain hung up.

My other fitness passions were going to the gym and running. I had to give up my gym membership 11 years ago as we needed the money due to moving home and our first child was on the way. After years of going to the gym six to seven times a week, I was no longer exercising and my neurologist believes that, and the stress of moving triggered my MS diagnosis. I don’t regret that decision as it could’ve happened regardless and being a parent is the greatest accomplishment in my life.

But 'use it or lose it' has often resonated with me so when things improved financially, I returned to the gym. It was tough. Over a year off, I’d lost so much strength and the added symptom of fatigue made even a 30 minute workout near impossible.

I persisted. I’m glad I did as I’m a fan of playing the long game, my patience is pretty good and eventually I started to feel fitter. Fitness improving with exercise is obvious I know but MS fatigue is something worse than just feeling out of shape so when I started to notice my fatigue had lessened, my morale was in a really good place.

Fast forward to 2016 and whilst I was watching the London Marathon like I do every year, I had always dreamt of taking part but wrote off my chances due to my MS. The commentator then said “if you’re ever sitting there watching and thinking you want to take part but can’t, just apply and see what happens” so that’s what did. One year later I fulfilled a lifelong dream and thankfully the cameras didn’t catch my ugly crying face when I crossed the finish line! I’m so glad I pushed myself.

Four years later I’m still running two to three times a week and still going to the gym five to six times a week. I’ve got RRMS and I feel lucky that I can still do most of the things I did before my diagnosis as one day, things might worsen and I have to look for a different form of exercise. I truly believe finding an exercise that you enjoy can help you mentally as well as physically and my MS is in a good place as a result of that.

I’ll keep going, keep on running and keep making sure I exercise.

What is Loneliness Awareness Week?

Posted on: June 17 2021

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Hosted by the Marmalade Trust, Loneliness Awareness Week is here to recognise that we all get lonely. As humans this is a natural emotion that we feel as sociable beings. In the past year in particular, being made to isolate and stay in our homes has been a particularly lonely experience, despite a unifying one. Being separated from friends, family, colleagues and human interaction overall has been difficult for many at times. As the world reopens, it's easy to get overwhelmed so check out this blog from MS-UK Counsellor Mark Howe on tips to socialising in this new version of the world. 

This year, the Marmalade Trust is campaigning to remove the stigma attached to loneliness and accept that it exists. It can be a difficult topic to talk about and sometimes tricky to recognise that you’re feeling this way. By increasing our understanding of loneliness, we can further help ourselves and others who experience loneliness. By removing negative language and stereotypes associated with it, loneliness becomes a widely accepted emotion and experience. The Marmalade Trust has this set of resources to help you learn more about loneliness. From the physical effects, how to talk about it and self-care, there’s something for everyone.

View the Marmalade Trust’s loneliness resources

Here at MS-UK, we’ve been working with multiple sclerosis (MS) community to improve the services available to people who are experiencing loneliness. The Peer Support Service was launched at the beginning of this year, with a selection of Peer Pods available for anyone living with multiple sclerosis to join.

The Loneliness and Isolation report was released last year, and you can read the full report and findings here. Click the here to read Diana’s blog about the steps MS-UK is taking or watch her video below.

Feeling hot? Six quick and easy tips to keep cool this summer

Posted on: June 17 2021

It’s that time of year again, the sun is out, the mercury is gradually rising and it’s time to welcome in the unpredictable British summer for the next few months. For some people affected by MS, summer can also be a time of concern as the increase in temperature and humidity can cause a temporary worsening of symptoms, so it is important to keep as cool as possible. Allow us to assist you in cooling down with these six tips which you can take advantage of with minimal fuss. Helpline Officer, Shaun shares five handy pearls of wisdom to beat the heat. Shaun 5.jpg

Cool your pulse points

Your body contains pulse points that assist in your body’s heat regulation function, situated in areas such as your wrists, ankles, the rear of your knees and your elbow crooks. These are sensitive points of your body where the veins are closest to your skin’s surface, allowing you to access your blood and circulatory system more directly than in other areas of your body. By applying something cool to these areas for 20 minutes or so at a time, such as an ice pack covered with a towel, a cool wet towel or simply a bag of something frozen from your freezer, your body will benefit from a rapid cooling sensation.

Cool your feet

Your feet are home to thousands of nerve endings and play an integral part in helping you to control your body’s temperature. Keeping your feet cool can be a quick and easy way to prevent overheating. For example, fill a bowl or bucket with cold water and dip your feet into it, place a damp towel over your feet, spray your feet with cool water or a specialist cooling foot spray, such as ones infused with Peppermint that help to promote that cooling sensation.

Cool ties and scarves

Cooling scarves are simply something you tie around your neck with the impact being a full-body cooling sensation. These simple yet effective ties and scarves are relatively cheap and accessible. Some come with replaceable cooling inserts that need to be frozen and others contain polymer crystals that when soaked in water cools the body through evaporation. There are some scarves, shawls and ties that you can buy direct from the suppliers and there are also other options available on the internet. Try Soo Cool, MediChill, or TieChilly, with other providers also being available. 

Cool clothing

Wearing suitable clothing made of breathable materials is a must in the quest to stay cool. Cotton, linen and rayon are all materials that are breathable and can help your body’s temperature regulation process. Go for lightweight, loose clothing and if you are venturing outdoors also consider the colours you wear. Remember, dark colours absorb more heat than lighter coloured ones, with the science behind this being that the closer to black, or darker, a colour is the more light energy it absorbs. The lighter the colour the more light energy is reflected with the result being that your body stays cooler.

Cool your environment

Keeping your home cool is an effective and easy way to help prevent your body from overheating. Some quick ways of doing this include closing the curtains or blinds of windows that are facing the sun, positioning an ice pack or bowl/drinks bottle containing ice in front of a fan to create an air conditioning effect and closing the doors to a room you wish to keep cool to help prevent warm air from entering. Also consider letting the cooler night air into your home by opening your windows once the sun has set, so long as you feel comfortable in doing so.. iStock-1168952236.jpg

Cool your diet

Staying hydrated is a vital part of helping your body to stay cool, with the Public Health England’s Eatwell Guide suggesting we each consume between six to eight glasses of fluids per day, this includes water, squash, tea and coffee. It is not just about drinking water regularly, when you sweat to keep cool your body loses electrolytes such as sodium which our bodies use to help maintain fluid balance and blood pressure. The good news is that there are easily accessible, healthy drinks that provide a good source of electrolytes, such as Coconut Water and Milk. Foods such as Yoghurt, Bananas, Watermelon, Avocado, Chicken and Kale are amongst a whole host of foods that provide a natural source of electrolytes. Why not try a cold salad on days where you feel particularly affected by the heat, washed down with a cold glass of water or sugar-free squash?

If you have any questions about multiple sclerosis, call our helpline free on 0800 783 0518 and speak to one of our helpline information officers. The MS-UK Helpline is open Monday-Friday, 10am-4pm. 

Loneliness Awareness Week - 14-18 June

Posted on: June 14 2021

Last year MS-UK launched our report on Loneliness and Isolation during Loneliness Awareness Week in the height of the COVID-19 and lockdown number one where we were all been forced into isolation! A year on we have made delivered on some of the next steps which Diana Crowe, Head of Services here at MS-UK would like to share. Here's just some of the highlights. Diana.jpg

Peer support

We said we would look at creating a new online forum for people affected by multiple sclerosis (MS) however when we conducted our research we realised that there were already so many great forums out there. Instead, we shared videos on all of our social media channels about what online forums are, how to access them and how to stay safe when using them. We also created a webpage to share the different forums with the MS community.

At the beginning of 2021 we also launched our peer support service which is part of MS-UK Online. We are connecting people within the MS community who have common interests through our different online Peer Pods. Please email peersupport@ms-uk.org if you would like to find out more how you can meet others.

Mental health

We have continued to provide our online counselling service which is delivered by telephone and also by Zoom. We launched in September single session therapy which is a one-off session with a counsellor who helps to find a way forward with a specific MS-related issue that is impacting on life right now. Due to current high demand we are unable to take any referrals but are working hard to increase capacity and reduce waiting times. Please email counselling@ms-uk.org if you want to register your interest in the service and be informed when we are taking referrals again.

We continue to offer Mindfulness courses that are designed to help people with MS live more consciously and to help manage their MS. We have a nine-week Mindfulness Based Stress Reduction course and a four-week course which offers a less intensive option and is a good introduction. Please email register@ms-uk.org if you would like more information.

In October 2020 we ran a campaign on World Mental Health day which enabled us to share information about support available at MS-UK and other resources and services with different mental health organisations. In March this year we ran a campaign during National Complementary Therapy week to showcase the many therapies that for some really benefit individuals. Please take a look at our Choices booklet.  

Raising awareness

Promoting kindness was really important for the MS community so we ran a campaigns on World Kindness Day last year and in February this year on Random Acts of Kindness Day. We encouraged people to send one our postcards to reach out to someone in a random act of kindness which can make such a difference to wellbeing. Watch this video if you missed it to hear some of the stories you shared!

What's next?

We will continue to do what we are doing and ensure that we do not lose sight of the issues of loneliness and isolation and work with our staff to help them recognise signs and how to support people more effectively. We are starting to talk with link workers within social prescribing services to make sure they are aware of the support available to people affected by MS.

This week we will be launching our three new Peer Pods to continue to grow our Peer Support service. They have all been chosen by our Virtual Insight Panel and we invite you to take a look and get involved. Please visit the webpage about our Peer Support Service for more information. 

Watch Diana's video on Loneliness Awareness Week

The impact of COVID-19 on people with multiple sclerosis

Posted on: May 26 2021

Research student and MSer, Hannah Morris shares the findings of a survey to determine the impact of COVID-19 on people living with multiple sclerosis (MS). hannah resized.png

As COVID-19 restrictions are gradually being eased and the number of people contracting the disease goes down, we can’t help but reflect on the whirlwind of changes that we have had to endure over the last year and beyond. Not a single person in the world has not been affected by the situation to some extent or another, whether it be directly by catching it, or simply having to change the daily routine to adhere to social distancing protocol regardless of if you have even known anyone to have had COVID-19. 

Our article was recently published in the latest edition of the New Pathways magazine, relating to out interesting findings on the experience and impact of COVID-19 on people with multiple sclerosis (MS) and I wanted to use this opportunity to share a summary of findings to those who may not have had a chance to read the article.

Most people, like myself, reported that the COVID-19 pandemic has had a neutral impact on them and in most cases, this was due to a mixture of positive and negative things that have come out of the situation. The negatives people mentioned were mostly due to anxieties as a result of treatment interruption, whether it be related to medication, various therapies, or even just routine appointments. The positives mostly related to being able to use the extra time at home to engage in hobbies, be with family more, or just to rest, something that those of us who suffer with MS fatigue are massively grateful for!

Unfortunately, however, for just over a third of those who took part in the survey, the COVID-19 pandemic has had a negative impact on their mental health causing additional anxieties related to fear of themselves, or loved ones catching COVID-19, or the impact on treatment leaving them vulnerable to having a relapse or progressing. People who are younger, have a progressive diagnosis of MS and have existing psychological symptoms were more likely to report a negative impact.

We believe that these are the subgroup of people with MS that would benefit from additional support, perhaps by drawing upon the things that are working for those who have been managing well at this time. However, as we now see things returning to some level of ‘normal’ it is hoped that the negative impact may be lessened as treatments recommence and the risk of catching COVID-19 decreases.

This is just a summary of the findings, but if you’d like to read more, you can see the full article here: https://rdcu.be/cjTqW

Invitation to the MS community to support the development of a psychological intervention

As we make one final call for people to support in the next step towards developing a psychological intervention for people with MS to bridge a gap that is missing, yet needed for so many, we invite anyone who hasn’t yet to complete our survey here: https://forms.gle/5YTssp4pDVFciYEe9

You can also read more about our research on the topic here: https://research.reading.ac.uk/neurodegenerative-diseases/multiple-sclerosis/

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