The heat is on for new cooling drug, says Feature Writer and MSer Ian Cook.
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.
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.
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.
by Martin Baum
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.
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...
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.
Meet Sadie. At only five years old, she's accomplished an amazing fundraising activity to support MS-UK! Here's her story...
My sister, Amber age six, climbed Snowdon last year for MS-UK and I said to my Dad I think its my turn to climb a mountain this year, but I am only five. We decided to try a different mountain, so we chose Scafell Pike which is not as tall, but it is steeper. I set up my donation page, bought some new walking boots and got training. As the weekend approached, we noticed the weather looked very bad so I suggested we go a day earlier and climb on the Friday.
We drove late Thursday and arrived at our hotel after 10pm. On the morning, the weather was lovely and we set off climbing at 10am. Before we started, my Dad stood in a big cowpat which made me laugh and him stink a bit! The climb was very steep, I had to use my hands a lot. The best part was where we had to climb across a stream and we didn’t even get a little bit wet. I had fruit pastelles to get me to the top or as I called them ‘Super boosting sweets’. It took 2.15 hours to get to the top. We turned straight round and came all the way down. In total it took 4.08 hours. The climb was very very tough and I got some bad blisters but I knew we had to finish. My dad told me how proud so many people were of my achievement (he said he wasn’t crying but his eyes had lots of water coming out of them) and I was allowed to have dessert before my dinner that evening.
My grandad had multiple sclerosis (MS) for 22 years and had such courage. Unfortunately, he passed away in 2019 and I miss him a lot. I wanted to do something to make him proud and carry on his memory. I did it for MS-UK as they supported him and my family. They do wonderful things for people with MS. We raised over £2,000 and have made a memory for life.
Helpline and Information Supervisor, Laura is taking on a swimming challenge in memory of her dad. Here's her story...
Well, here we go again!
I first started my swimming challenge in October 2019. I had set myself the challenge of swimming 80kms over the course of a year to mark what would have been my Dad’s 80th birthday. He lived with MS for more years than without. I also work on the MS-UK Helpline, so not only have I seen and felt the impact of MS personally, but I also hear other people’s stories each week.
My challenge came to a grinding halt in March 2020 due to Covid. I had managed to cover 60 lengths every week for 20 weeks, I was well into the swing of things and really enjoying my time in the water. I was feeling fit, and each week was becoming easier. I felt really on track to achieve the distance.
The pools closed and I could not do anything about it. The months went by and in July 2020, we marked ten years of Dad’s passing. I felt disappointed that I could not continue my swim in his memory. Being in and out of lockdown, combined with restricted pool hours, meant my challenge was temporarily on hold.
Fast forward to this year when lockdown was once again lifted, the pool reopened with more flexible opening times. I had lost my swimming mojo though and kept making excuses that life was once again too busy, or I could not log into the new online booking system!
Then something clicked and I pulled my finger out! Last week saw me enter the water for the first time in 15months. I was quite nervous, I thought there is no way I will be able to cover the distance having not swum for so long. Being back in the water was so nice and although it took me several lengths to get my mind focussed, once I got going before I knew it, I had swum 60 lengths. It felt so good!
I have booked to go tonight, and I have made a promise to myself to do my best to go every week until I have reached the final distance of 80km. So far, I have covered 31.5km of my target. That means if I swim 60 lengths each week, I have another 32 weeks to go! I would love to complete it by the end of the year if I can. I will need to go more than once a week, but I am determined to finish what I started. Dad was the most determined person I have ever known, he is always my inspiration.
To donate to my Justgiving page, please visit the page here.
My name is Katherine and I am delighted to be given the chance to run the Virgin Money London Marathon this October for MS-UK!
I started running in my final year of university, after (drunkenly) signing up for my first half marathon. After training hard and crossing the finish line, I was adamant I would never be doing that again. Little did I know, I had caught the running bug and would go on to run a further four half marathons. Running has become my way to keep fit and healthy both physically and mentally, giving me a sense of achievement and confidence unlike anything else. With everything 2020 threw at us all, running became more important for me than ever, and the time seemed right to take on the Virgin Money London Marathon for a cause close to my heart.
I am fundraising for MS-UK as my mum lives with multiple sclerosis (MS) and it means a lot to me to be able to help support others and their families who are affected. MS by its nature is unpredictable, and as a family, we have found ways to adapt and keep smiling, and the way my mum approaches each day is an inspiration to me.
Fundraising so far has been great, putting my cause out there has kicked things off well, using my Instagram and Facebook pages to reach friends and family. Strava has been a great way to share my running progress and inspire donations, and I will continue to share my training as distances increase. Linking Strava to my JustGiving page means anyone can see the miles clocking up.
The big sporting events of this summer, the Euros and the Olympics, are great fundraising opportunities. I am currently running a sweepstake for the Euros which is great fun and a boost to my fundraising total. Hopefully, an in-person event over the summer will also be possible.
I am incredibly inspired by any runners who also live with MS, when my body protests at another training run, I remember all the people in #TeamPurple training too, and everyone my fundraising can help. I can’t wait to run alongside everyone in London and share the achievement at the finish line!
MSer and Feature Writer Ian Cook discusses male sexual dysfunction
Ten years ago I wrote a feature for a former New Pathways editor which had the rather risqué headline “Getting it up is getting me down”. The feature looked at what is referred to as male erectile dysfunction or ED as it is often called.
In the feature, I looked at two ways of overcoming the problem of ED which happens to many men with MS as the illness progresses. The first solution I looked at was the “little blue pill” otherwise known as Viagra. This drug is now better known as sildenafil and is now a little white pill which can be obtained over the counter at pharmacists as well as by prescription in packs of four.
The second way of dealing with erectile dysfunction I looked at was using a vacuum erection device (VED) – a long plastic tube which you place over your penis pressing the blue rubber seal onto the surrounding skin and using the vacuum that the pump creates to bring about the desired erection.
For the past ten years, I have used both approaches and each method has its pros and cons. The advantage of a pill is its simplicity and discretion. And almost as a sign of its success, there is now a drug alternative to sildenafil/Viagra in the shape of Cialis also known as tadalafil. Sildenafil/Viagra has worked well for me but pills aren’t for everyone for medical reasons such as side effects and interactions with other drugs you may be taking.
For this reason, I still believe the drug-free option is worth considering. VEDs are cheap and easy to buy (you can buy them at Ann Summers for around £20) or get them on prescription. VEDs do, however, have two drawbacks. The first is purely practical. Using them for a long time can make you a bit sore. The second problem is they are rather cumbersome, unsightly to be frank and can be a bit of a turn-off for many.
So which is best – the pill or the pump? The fact I still have sildenafil on repeat prescription suggests that I am still finding it useful, which is true, but the fact that I recently replaced my old VED for a new one suggests that I find it useful too, which is also true.
I would argue they both have their place in overcoming MS-related male sexual problems. For the past ten years pills and pumps have both worked well for me and the proof of that is that I still have them both in my bedside cupboard. I’d be hard pressed (no pun intended) to choose between the two.
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.
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.
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.
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.
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.
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..
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.
Tom Ledson leads an optimistic life. For Men’s Health Week, he shares what he does to boost his own wellbeing
I have always been positive and optimistic even before my multiple sclerosis (MS) diagnosis.
A particular hobby of mine is playing the ukulele. I taught myself to play at the age of 11 when I bought a ukulele from a school friend. I learned three basic chords and a few songs. I played for about six months and then stopped for no particular reason other than that I was young and that's what young kids do, or don't do. I didn't touch the ukulele again for over 40 years. My playing resumed just before I got MS. I found I had forgotten very little over those 40-plus years.
I have lots to keep me active. By doing things, I remain positive all the time. I even see my MS condition as a positive thing, using it as an example to help others.
I also teach beginners how to play. I have set up many ukulele groups, and must by now have of taught at least 200 people. The ukulele is an ideal instrument for those with MS. It is small, easy to learn and very versatile, too. It is also very cheap to buy. In fact, you can buy one for around £20. You can play all kinds of music – pop, folk, children’s nursery rhymes, sing-a-long songs, and so on. With just three basic chords it is possible to play over 100 songs including rock ’n’ roll. It is a pleasant instrument that becomes a sort of a friend – a real antidote to loneliness.
Since my diagnosis, I have taken active participation in my lifestyle, including hyperbaric oxygen therapy, and aquatherapy. I am a member of the neurotherapy centre at Chester. Since the pandemic began, I am actively engaged in home exercise, which includes walking with my stick, Nordic walking poles or a rollater, my personal walking machine, online exercises, and some physiotherapy leg exercise I got from the hospital physio. I also do regular exercises on Zoom with neurotherapy centre staff. I would recommend as much physical exercise as possible. You just need to keep moving. It's a case of use it or lose it.
I would recommend that people take their opportunities as they arise and see where life takes them. I would advise them to do things rather than try and do things, just do rather than try. They may not do well at first, (in fact they probably won't) but their persistence will pay off and they will get better in the end. I am quite sure of that. If they just try, then they give up too easily. Do things, and you'll get there. Keep learning. There is always new stuff to learn. Life is but a short journey. Enjoy your ramblings and where they take you.
I have learned to live with MS. Strange as it seems, I sometimes see it as a sort of bonus. I have made many contacts and met lots of interesting people, many with MS. I love helping people, so if anyone reading this is interested in learning the uke, writing poetry, or songs, drop me an e-mail at email@example.com – I will be happy to get you started, or just for the chat. You won't be disappointed, I promise.
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.
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 firstname.lastname@example.org if you would like to find out more how you can meet others.
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 email@example.com 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 firstname.lastname@example.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.
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!
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