Living with multiple sclerosis (MS) is a unique experience for everyone, including the range of symptoms someone might have and or the treatments that are available to them. Medicinal cannabis is a treatment that people up and down the UK need access to, and not just those living with MS.
It was legalised for medical purposes in 2018, but unfortunately, it’s renowned for being difficult to access. This has improved over time, and we’ll be running through some of the changes in access to medicinal cannabis, which are explained in detail in our latest edition of the Cannabis and MS Choices booklet that you can read and download for free.
Despite the government legalising medicinal cannabis, getting access to affordable private prescriptions is a hurdle for many, since getting it on the NHS is also quite tricky. The methods in which medicinal cannabis can be obtained in the UK include cannabis flowers, which would be taken via a vaporiser or tinctures administered under the tongue, similarly to high-street CBD oils. Sativex is an oral cannabis-based spray that can be accessed in the UK, with detailed information inside the Cannabis and MS Choices booklet.
A new study is underway in the UK with 20,000 patients to have a further look at the benefits and clinical effects. Project Twenty21 is being led by Professor David Nutt, who also runs the organisation Drug Science, to lead studies without political or commercial influence. The study comes in response to the National Institute for Health and Care Excellence (NICE) saying that there is not enough evidence to prescribe medicinal cannabis on the NHS.
Some people living with MS may benefit from CBD products available to buy on the high street. These are made using cannabinoids and do not contain THC – the psychoactive element of cannabis – and is found in hemp. The primary use of CBD is for pain relief and is available in topical creams or as tinctures that can be put under the tongue or mixed in food and drink.
For more detailed information on the use of medicinal cannabis and CBD for MS symptoms, download our latest edition of the MS and Cannabis Choices booklet. Don’t forget, if you have questions about MS, treatments, or need emotional support, you can contact our helpline Monday to Friday, 10am to 4pm via webchat, email email@example.com or call 0800 783 0518.
On 25 September, it's International Ataxia Awareness Day. Dr Gretchen Hawley has written this piece to help you understand what ataxia is and some recommended exercises that you can do if you live with this condition.
Ataxia is described as a lack of muscle control and coordination of movements due to damage to the spinal cord and/or cerebellum, the part of our brain that controls balance. One of the most obvious ways ataxia presents in people who have multiple sclerosis (MS) is walking with an unsteady or staggered gait. This may mean that you have a widened stance, irregular foot placement, and abnormal distance between each step. Fortunately, there are many therapies and strategies that can be beneficial to improving ataxic gait.
Physiotherapy exercises can help improve and maintain function/movement. General guidelines, when performing exercises, are to incorporate motor control exercises. For example, practicing standing up without falling backwards or coordinating arm and leg movements while taking a single step. Additionally, balance and aerobic training can help improve motor control as well as fight fatigue. You can find several ataxia exercises here. Exercises should generally be performed for at least 20 minutes, 4 days a week, if your body can tolerate it. Remember that quality is more important than quantity.
General guidelines for exercising as well as moving around your home or community with ataxia are:
- Do one task at a time. Avoid multitasking.
- Make sure you’re stable after standing and before you take a step.
- Focus on quality of movement rather than speed.
Neurologic music therapy (NMT) and rhythmic auditory stimulation (RAS) have also been found to be effective therapies for ataxia. NMT is the culmination of music therapy, neurology, and brain sciences and is classified into 20 scientific and evidenced-based music interventions. The techniques are applied using music and rhythm to directly affect cognitive and physical function. RAS is considered to be a type of NMT and is defined as a therapeutic application of pulsed rhythmic or musical stimulation in order to improve gait or gait related aspects of movement. These treatments have been found to be effective in facilitating the prediction of motor timing and gait rhythm, ultimately resulting in improved foot placement and less staggered gait.
Finally, implementing “modified independence” during your day-to-day activities can be an effective way to improve coordination as well as safety. This means using a mobility aid, such as a cane, walker/rollator, trekking pole(s), etc. Using any of these aids can result in the ability to accomplish your tasks, such as walking around your home, climbing stairs, performing chores, but while ensuring maximum safety. Personally, I enjoy having my clients use a rollator while practicing walking so they can focus on foot placement and leg coordination, rather than additionally having to focus on balance. There’s no need to focus on everything all at once. Modify at first to allow your brain to focus on fewer components. Then, as you get stronger and improve your coordination, you may be able to take the mobility aid away.
If you'd like to learn more about MS-specific exercise, you can attend our monthly information sessions with Dr Gretchen Hawley. Find out more and sign up to our next session here.
Ever forget where you’ve put your keys? Struggle to find the word that’s on the tip of your tongue? Can’t concentrate? You’re not alone. Thinking and memory problems affect more than half of all people with MS and can have a big impact on your day-to-day life. The MS Trust website offers an interactive web zone to provide everyday tips and tricks to help lift the ‘cog fog’.
‘Cognition’ is the general word that covers all aspects of thinking. It includes memory, concentration, and planning. The MS Trust have developed Staying Smart for people who want to learn more about how MS affects their cognition and to take action to reduce the impact that these problems have on everyday life.
Cognition difficulties generally fall into one of six categories, so Staying Smart focusses on those to help you quickly navigate to the information you need. You can work out which type of thinking is tricky for you, and select one of the everyday problems you experience, this will take you directly to the expert advice, hints and tips you can use yourself.
The most important feature of Staying Smart is you! It gives you the opportunity to learn from other people with MS facing similar issues. On each of the six key information pages, we encourage you to add any ideas and hacks which have made all the difference to you. It might be just the thing that someone else needs to help them.
To take a look at Staying Smart to both give and get advice take a look at the MS Trust's website: www.mstrust.org.uk/staying-smart
The burden of fatigue
81% of people living with multiple sclerosis (MS) experience fatigue (1). In an interview study with people with MS, one woman described fatigue as, “‘it puts my body in a situation where I feel like I’m shutting down. Like I’m just stuck in concrete and can’t move” (2). This type of fatigue is different to normal tiredness and isn’t usually relieved by sleep or rest (3).
Fatigue can have a big impact on people’s lives. Research shows that fatigue in MS is associated with:
Developing treatments to help manage fatigue is important not only to alleviate the symptom but to improve overall quality of life. In collaboration with people with MS, families and healthcare professionals, the MS society has identified fatigue as a top research priority (5).
The Flexible Brain Training (FLEX) project is an online program developed by researchers at King’s College London and people with MS. FLEX is designed to help people with MS manage the impact of fatigue on their lives though a type of brain training.
What is flexible brain training and how might it help?
Evidence shows that fatigue affects areas of our brain which are involved in processing information (6). For example, you might notice when you’re fatigued it’s difficult to focus or take in new information. To get around this our brains make mental short-cuts, for example skim reading.
By continually using these short-cuts our brain gets used to following the same path and the short-cuts can become automatic. These automatic short-cuts can result in our brains becoming less flexible over time. So, rather than taking in new information and adapting to environmental cues, our brain relies on the same old paths it is used to taking.
The FLEX project is series of self-guided, online sessions over a period of 3 weeks, designed to increase brain flexibility through repeated practice.
The FLEX project will assess whether we can
We are now testing the FLEX program to see if it is helpful for people with MS.
We are recruiting people with MS who experience fatigue to take part. Participation involves
To find out more please register your interest on the study website: www.flexproject.co.uk
Toilet trouble is very common in MS
Bladder and bowel issues affect a large number of people living with multiple sclerosis (MS). Problems in these areas can seriously affect quality of life, as you may be afraid to leave the house for fear of having an ‘accident’, and therefore symptoms can impact on your independence and social activities.
No two people experience bladder and bowel issues in the same way, as is true of most MS symptoms. For some, the problem is incontinence, where they cannot control the release of urine of faeces. For others, they may have issues with starting the flow of urine.
Experts advise you try to drink plenty of water. Though that can seem counterintuitive for bladder problems, especially if you have incontinence, if you don’t drink enough water it means urine in the bladder will be more concentrated, which can cause urinary tract infections. Aim for between one and two litres of fluids a day. If you struggle with plain water, adding slices of fruit can help make it more palatable.
Avoiding caffeine, alcohol and artificial sweeteners such as aspartame can be helpful as they are all bladder irritants.
For bowel problems, start keeping a bowel diary so that you can share it with your healthcare team. There are apps that can help with this, such as the Bristol Stool Chart app. This will help your healthcare team get a clearer picture of what’s going on.
With constipation, you can try increasing both your fluid and fibre intake, doing regular exercise if you can, and there are certain abdominal massages which can help.
You could also try a Squatty Potty, or a similar type of small stool that goes around the base of your toilet and alters the position of your bowel. Before toilets were invented, humans would naturally squat to go to the toilet, and this stool allows you to benefit from that position, while still using a toilet. Some people find this helps ease constipation.
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.
Olfactory hallucination are nothing to be sniffed at
Have you ever found yourself commenting on the sudden smell of burnt toast, much to the bewilderment of your family? Or were sure you could smell something foul, yet others around you were baffled and unable to detect anything? Well, you may well have been experiencing phantosmia.
Phantosmia is the name for olfactory hallucination – in other words, when you detect smells that aren’t actually there. And it is a symptom sometimes reported by people with multiple sclerosis (MS).
The smells detected can vary hugely from person to person, and they can be extremely pleasant, or completely foul. The odours can come and go, or someone may be able to smell them all of the time.
So far, science knows that phantosmia can be caused by a number of things. These include inflamed sinuses, brain tumours, temporal lobe seizures, head injury, upper respiratory infections and Parkinson’s disease.
Smell and MS
The sense of smell has long been used in sensory evoked potential testing to monitor the progression of MS, even though some doctors feel this option is not as reliable as visual evoked potential testing.
Smell is regulated by a network that includes the olfactory nerve and other areas of the brain. The nerve doesn’t have much myelin, and scientists previously thought the sense of smell was relatively untouched by MS. But research has since shown that olfaction is often damaged in the early stages of neurodegenerative disease, such as Alzheimer’s and Parkinson’s.
One three-year study, which looked at 20 people with MS, found that around half of people with the condition have a reduced sense of smell, and that olfactory impairment may be a marker for disease progression.
Consult your doctor if you are experiencing phantosmia, so that other conditions can be ruled out.
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.
Everyone with a diagnosis of multiple sclerosis (MS) in the UK should have access to an MS nurse, but sometimes patients do not know what they should contact them about or the support they can offer. Sometimes they just don’t want to be a bother, but actually, your MS nurse should be your first point of contact if there are any changes in your MS and you’re not bothering them, it’s their job.
What does an MS nurse do?
MS specialist nurses are trained to offer direct support and clinical advice. They can also refer you to other services such as physiotherapy, occupational therapy, counselling and urology to name a few.
How often should I see my MS nurse?
How often you see your MS nurse will depend on how active your MS is. MS patients should see or have a telephone appointment with their MS nurse at least once a year or every 6 months, but if your MS is more active or you are taking a disease-modifying therapy you will see them more often. Even if there has been no change to your condition since the last time you spoke it’s important to just check-in and document that on your records. It is also a good opportunity for your MS nurse to share any recent developments in the world of MS and anything new that might be of help to you.
Tip: Between appointments keep a list of questions you want to ask. Sometimes you may have lots of questions you want to ask and when the appointment finally comes around, you forget what we wanted to ask. Alternatively, you can download this free helpful list of suggested questions, which might help get you started.
I don’t have an MS nurse, how do I get one?
If you do not have an MS nurse or perhaps you’ve not engaged in a while and need to get back in touch, the MS Trust offers a map, detailing all the MS nurses in the country and how to get in touch with them. Click here to visit the map and find your MS nurse.
It is a pleasure to be able to put together a series of masterclasses around exercise and education in MS. I spend a lot of time working and educating people around their symptoms and seeing the effects that MS has on their bodies, whether walking, sitting or tasks of daily living. By helping people have better knowledge and understanding about their MS symptoms, it allows people to have more independence and improve their quality of life.
As a Level 4 Exercise Coach for Long term Neurological Conditions, I have been working with people with MS and other neurological conditions for the past nine years and if you have been following our online classes or joined in one of the many information sessions from our fellow professionals, you will be building a wealth of understanding that will help you on a day to day level, reduce symptoms and help maintain a more stable condition.
People with MS experience different symptoms with their condition from muscle weakness, fatigue, spasms, numbness/ tingling, difficulty walking, coordination, balance issues, are just a few symptoms associated with MS. One of the many symptoms I am asked about is foot drop, the inability to lift the toes and flex the foot at the ankle. Many of you may have found yourself walking normally and then after some time your foot starting to drag or catch on the floor, maybe having more trips and falls, a high stepping gait or throwing the leg out to the side when trying to walk.
During the next masterclass, I will address some of these areas and demonstrate some exercises that can be beneficial for foot drop. I will talk about types of equipment that can be used like foot drop stimulators and foot orthosis that assist for the foot drop condition.
The exercises will help to support a better functional capacity and help maintain a more neutral foot position. We will also look at the global effects that it has on the rest of the body when sitting, standing and walking itself.
If you like the sound of this masterclass, please come and join us! To register for the session, please click here. There is a suggested donation of £5, but you can donate any amount from £1 to attend.