We chat to Grazina Berry, the new CEO of the Overcoming MS charity, on what their message and mission means for people living with MS
I joined the Overcoming MS (OMS) charity as its CEO at the start of July this year. I was drawn to OMS due a personal connection – a close member of the family lives with multiple sclerosis (MS), but also because the evidence-based seven-step recovery programme has immense potential to transform the lives of many at scale.
The programme is based on the work of George Jelinek, Professor and Head of the Neuroepidemiology Unit (NEU) at the University of Melbourne. The NEU investigates the modifiable lifestyle risk factors that predict the progression of MS with a view to refining a preventive and holistic approach to manage the condition.
There is some evidence that a range of environmental factors, such as low levels of sun exposure leading to a lack of vitamin D, a diet high in saturated fat, smoking, and stress play a significant role in MS progression. And so, at the core of the OMS programme are seven steps that can be taken to address those factors, by
Our main message is that thousands of people with MS world-wide have been able to adopt the OMS programme and are living well, and so can you. Our organisation is here to help, guide, inform and empower everyone to make these lifestyle changes and give people with MS real hope that they can live well.
Every person with MS has a remarkable story to tell. For some, their story is full of hope and optimism, for others, it’s one of challenge. This is reflective of the fact that everyone’s life with MS will be very different. I’ve been particularly moved by the story of Abre, a 17-year old boy from South Africa. He lost his sight for six months at the age of just three, and 11 years later, was diagnosed with MS after a major relapse. Abre has been able to change his life, having discovered the OMS programme and is pursuing his dreams. His motto is ‘I have MS, MS does not have me’. This is powerful, inspiring and real.
The challenge for MSers
The world we live in at the moment due to the pandemic is extremely challenging, frightening and uncertain, and this is difficult for everyone. Being faced with MS can add to the challenges in a number of ways, for example
For anyone newly diagnosed
Bearing in mind that advice at the point of diagnosis may not necessarily be welcome while the person takes time to process the news, I would first and foremost offer empathy and understanding. The reality of MS can be tough.
It’s quite common for people at the point of diagnosis to hear lots of ‘cannots’ and the focus on the likely detrimental impact of the condition on the individual’s life. Any advice I would give would focus more on the ‘cans’ and practical things that are within your control. You can take control of certain aspects of your life to help manage the condition, you can look at different options and treatment choices available to you, to help manage your MS, you can reach out to others living with it to share how you feel and seek support. You can live well.
I am very passionate about the community of people with MS that we serve, so my first priority is to build lasting and meaningful connections. It is vitally important that we develop and grow as an organisation, driven and inspired by the needs of people with MS. This means that we will work hard to enable easier access to the OMS programme for every person with MS, build more and better ways for people to connect with others, further boost our digital engagement and support channels. We will work with other organisations and healthcare providers so that every person diagnosed with MS is given the opportunity to make an informed choice as to their treatment pathway. A holistic lifestyle modification programme has to be one of these choices.
Find out more about OMS at www.overcomingms.org
Want more great interviews, news and advice about living with MS? Subscribe to New Pathways magazine!
Martin Baum made a breakthough during last month's heatwave
As an MSer of almost 40 years, I have found there are more questions than answers to living with multiple sclerosis (MS). My late father always used to say there were only solutions, never problems, but that was a time before MS challenged that philosophy, more’s the pity.
Yet while we MSers wait patiently for the cure that we hope will come, eventually, sometimes something does happen to make coexisting with an unwanted cuckoo in the MS nest liveable. While this has never been a perfect arrangement, the recent summer heatwave had been making an awful situation worse.
I recently wrote about enduring not only the summer nights but also having to tolerate the consequences of my body from overheating wihch you can read here. I finished the blog by saying how I had a gel pillow to try and cool my corrupted body thermostat. At the time of writing, however, it was still to be despatched from Amazon so I couldn’t really judge how efficient it was, if at all. I had a lot riding on this.
When it comes to buying ‘things’ I am, by my wife’s own exasperated admission, an advertiser’s dream. The blurb on the box, however, was very promising. ‘A naturally cooling gel pillow with the gel transferring the heat away from the body’. Potentially this was a game changer in my interminable journey with MS.
The room temperature the night I laid the thin blue gel mat on my pillow was nothing short of oppressive, as was my body. But here’s the thing. It worked. Up until that moment, from being sodden at night throughout the heatwave, the beads of sweat began to dissipate. Some nights it took a little longer than others for the gel pad to kick in but, nonetheless, it has every time since.
Night sweats have always been an issue which I’ve had to live with as a natural consequence of having MS. However, there was something about this summer’s heatwave that for me was the tightening of the MS screw that was my breaking point. Something had to be done and mercifully the gel pad came through for me.
Since the blog was published the response to my inbox has told me that this is also an issue for a lot of other MSers which confirms I am not alone. Clearly, while I’ve been waiting all my MS life for a miracle, so have others. Yet, because of the gel pad, within minutes, it was my escape from my own body heat. I hope this will be the same for others, too.
The Vinsani Cool Gel Pad Pillow Gel Inlay costs £6.99 and is available on Amazon. Did you know if you set up Amazon Sile and choose MS-UK as your nominated charity, Amazon will donate money to our charity every time you make a purchase, at no extra costs to you? Visit Amazon Smile
Our helpline has been busy writing and putting together new publications this year to extend our range of Choices booklets. We asked the multiple sclerosis (MS) community for suggested subjects to write about, subjects that you, people affected by MS, wanted to read about and gain more understanding. Cognition was a popular subject.
Cognitive difficulties are experienced by around 50 per cent of people living with MS. Some will only experience mild, more manageable symptoms, whereas others will experience symptoms to a larger degree.
Speaking about cognition and how it can impact a person and those around them can be a difficult subject to discuss. It can be hard to acknowledge that a person’s cognitive abilities are not as they once were.
We wanted to make it easier to understand the different ways in which cognitive difficulties can impact and to provide a wealth of information on how to manage it including tips from those who currently live with the symptom.
You can download our Cognition booklet from our website here. It is also available in plain text format. You can also order a hard copy and we will post this to you as soon as we are able. Please order via our website here.
All our Choices booklets are sent to our virtual insights panel (VIP) before publishing to gain feedback from people living with or affected by MS. The feedback we received on the Cognition booklet was very positive and included quotes such as:
‘I cannot express how pleased I am that you have brought this leaflet to my attention. I will be highlighting this to other people with MS.’
‘This leaflet is excellent, I feel very strongly that people do not see MS as having cognitive issues only physical ones.’
‘It will be a useful document for those of us (me included) who have issues with cognition.’
It is really helpful for us to receive this feedback to make sure we are producing what is really needed by the MS community. If you would like to join our panel please sign up here.
We will continue to review our current publications and also write new ones when required. We have another new booklet to be published soon too, all about spasms and spasticity. Keep a check on our website for when that comes. If you have any suggestions for other subjects that we are yet to cover please let us know. Email firstname.lastname@example.org We always welcome suggestions.
Laura & Ryan
MS-UK Helpline Click here to download your free Choices booklet
Can multiple sclerosis (MS) cause sleep problems? The answer is a resounding yes. Research by the charity Shift.ms recently found up to 85% of people with MS have sleep issues, which leads to fatigue, which is also one of the most common symptoms of MS. Fatigue and insomnia go hand in hand with MS, and so good sleep hygiene when you have the condition is important.
Here, nutritionist and author Rob Hobson shares his top tips for getting a decent night’s kip
In 1981, a Harvard Medical School professor, Dr Charles Czeisler, discovered that it is daylight that keeps our circadian rhythm, or body clock, aligned with our surroundings. Any light can suppress the secretion of melatonin, so try and keep your bedroom dark by using blackout blinds or investing in a sleep mask.
If you wake up during the night, then any light creeping through gaps in curtains and blinds can be a distraction preventing you from getting back to sleep. While any light can suppress the secretion of melatonin – the hormone that promotes sleepiness – it is blue light that has the greatest negative effect. This light is emitted from electrical equipment such as computers, mobile phones, notebooks and TVs.
If you do need a light on, then research has shown how red light has the least impact on melatonin production making this wavelength of light the most conducive to sleep.
You can buy red or pink bulbs to use in your bedroom and even strings of novelty lights, but these may not be to everyone’s taste. The next best thing is to use incandescent bulbs that give out diffused, warm light and can be controlled with a dimmer switch on side lamps. During the day, make sure you expose yourself to plenty of natural light as this can help to boost mood and make you feel more energized. It, in turn, can have a positive effect on your ability to sleep at night. But remember, when it’s time to sleep, it’s lights out!
If you want to prepare your body for a good night’s sleep, you need to chill out. When we think about the effect of temperature on our body it’s easy to assume that heat can help us to sleep.
Sitting outside in the midday sun or inside a hot study can leave you feeling dozy, but the tiredness you feel from high external temperatures during the day is a side-effect of your causes. In contrast, your circadian rhythm is very attuned to body temperature – it’s one of the functions it controls to help you fall asleep or stay awake. During the day, your body temperature rises naturally until late afternoon, at which point it then starts to fall. As you start to fall asleep your body temperature begins to lower by one to two degrees, which helps the body to conserve energy. The drop in temperature signals the release of melatonin to help induce relaxation and sleep by slowing the heart rate, breathing and digestion. If your sleep environment is too hot or cold, this can make it more difficult for your body to reach the optimal temperature required for a good quality of sleep.
Take a bath
While it may seem counterintuitive to what we’ve just discussed, many studies have shown that warming your body by bathing can help to promote sleep, but to harness these effects, timing is key. The best time to take a bath is at least one hour before you hit the hay, as this gives your body enough time to cool down to its optimum sleep temperature. Similar effects have been shown when showering or even soaking your feet in warm water to increase your skin and body temperature. Bathing has also been shown to help relieve anxiety and muscle stress, which can help with relaxation and sleep. Epsom salts are a good choice for putting in the bathwater, as they are rich in magnesium which helps to promote muscle.
Oils traditionally used for relaxation include lavender, bergamot and ylang-ylang. You can make bath time even more relaxing by burning candles and turning out the bathroom light. Listening to calming music or using a meditative app on your phone can also make bath time even more relaxing and offer an opportunity to calm a busy mind.
Restlessness and a busy mind can easily make falling asleep difficult. As you lie awake your mind can go into overdrive while you focus on the issues and worries impacting on your life, many of which you will unconsciously ruminate on all night. People who write down their thoughts, activities and tasks that need to be completed before they go to bed fall asleep much quicker than those who don’t. Keep a pad of paper and a pen next to your bed so you can jot down your thoughts before you go to sleep each night. As well as writing down your worries and stresses, include any unfinished tasks that need to be completed the following day, or make a to-do list.
If you wake up during the night and your mind starts to wander, read through your diary and to-do list, adding to it if you need to. Sometimes the best ideas can occur in the middle of the night, so be sure to keep plenty of space to jot these down. Don’t spend hours lying in bed trying to fall asleep. Instead, get up and sit somewhere quiet, keeping the lights down low. Use this time to help organize your thoughts by writing them down rather than letting them buzz around on repeat in your head.
The position you choose to sleep in could be a factor in your ability to sleep through the night. The most common sleep position – and the one recommended by many sleep experts – is foetal. If you choose to sleep this way you should favour the opposite side to the one of your dominance (in other words, if you’re right-handed, choose your left side). Not all experts agree on this though, with many suggesting that sleeping on your back is better for your health, even though this is the least popular position to sleep in. Establishing the best position for sleep ultimately comes down to comfort, and you can figure this out through trial and error.
Extracted from The Art of Sleeping by Rob Hobson (£9.99, amazon.co.uk)
Early summer so far has seen some glorius weather so far but, whilst some may bask in the fact that we’d normally have to pay to go on holiday to get this heat, others may have feelings on the opposite end of the spectrum. People who are affected by multiple sclerosis (MS) have widely differing symptoms when it comes to heat sensitivity. Here are some tips to help you in the hot weather.
1 ) Think about your clothing
Whilst wearing shorts or loose clothing are obvious ways of keeping cool, changing your choice of footwear ican make a big difference, too. Wearing trainers or closed-off shoes can affect your whole body in hot weather, as there are lots of pulse points around your feet and ankles. Liberate your feet with appropriate sandals to help them breathe, or alternatively, dunking your feet in some cool water when you take off your shoes to cool off!
2) Chilling your sheets before bed
Despite being only a short-term solution, chilling your sheets in a sealed bag in the fridge for a couple of hours before you go to sleep can help you feel cooler, or try the freezer for faster results. Although your own body heat will warm up the sheets fairly quickly, it can help your body cool in that period, which in turn could help you drift off to sleep easier.
3) While you’re out of the house, close your curtains
When you leave your curtains open, it allows sunlight to come through and essentially heat the area like a greenhouse. When closed, the curtains will prevent this greenhouse effect beyond your window sill and keep your house much cooler. It can make a huge difference, especially if your house faces the sun.
4) Unplug electricals that aren’t in use
Plug sockets that are filled with electronics that you aren’t using will generate more heat. If the plugs become too hot, especially in a heatwave, it increases the chance of a fire hazard as well. So it may be a good idea to lose the unnecessary electricals at this time of year!
5) Invest in Kool-Ties or Cooling Vests
Kool-Ties are simply something you tie around your neck, can work for up to three days, and cool the whole body through cooling your neck. Cooling Vests have special cooling crystals incorporated into the material which are soaked in cold water, then can hold the temperature for a substantial period of time. You can even get versions for dogs!
Other ways to help keep cool in this hot weather can be taking regular cold drinks and wrapping a cold damp towel around your neck.
The MS-UK Helpline team have been working really hard to answer all of your questions around how coronavirus will affect your multiple sclerosis (MS). Here are some of your frequently asked questions answered.
I’m taking a disease-modifying drug for my MS, does this leave my immune system compromised?
The answer to this question depends on which MS drug you are taking. Some will leave you with a weakened immune system and others won’t. The MS Society published some useful guidance on which drugs leave you most susceptible. Click here to read more. For more information about coronavirus and disease-modifying therapies in MS the Association of British Neurologists (ABN) has also released some guidance.
I have MS but do not take any immunosuppressant drugs, how will coronavirus affect me?
For the first time yesterday, the PM announced that people with MS should be practising social distancing. Social distancing encourages those that can to work from home, avoid large public gatherings and public transport, and avoid anyone displaying symptoms. Click here for more information.
Someone in my house is living with multiple sclerosis. What can I do to protect them?
You can also practise social distancing with them to reduce your chances of contracting the virus and bringing it home. Taking it one step further, the person living with MS in your house could self isolate in one room away from the rest of the household to further limit their chances of contracting the virus. Click here to see the guidance on social distancing and self-isolation.
For the latest information on coronavirus, visit www.gov.uk/government/topical-events/coronavirus-covid-19-uk-government-response.
We have received some calls to our helpline about the recent news of COVID-19 and concerns about the impact it may have for people with multiple sclerosis (MS).
There is limited information and advice available specifically relating to MS. If you have MS, the risk of developing the virus is the same as the general population. This risk is currently considered low in the UK.
Generally, this virus can cause more severe symptoms in people with weakened immune systems, older people, and those with long-term conditions like diabetes, cancer and chronic lung disease. Having MS does not mean your immune system is weakened.
However, some disease modifying drugs supress the immune system. These include Lemtrada, Ocrevus, Tysabri, Mavenclad and Gilenya. A side effect of these drugs is increased risk of infection.
Professor Gavin Giovannoni has written a blog post for the Barts MS blog which talks about the risk factors of these drugs in more detail. You can read more here:
As with other health issues, such as flu, cold, bladder infection, or any other viral issues, you can have a temporary worsening of your MS symptoms. Symptoms will likely settle down once you have recovered from the infection/virus.
Any concerns, we would suggest speaking with your MS team. As things stand it is not being recommended to stop and DMT treatment – always speak to a health professional in the first instance.
To avoid catching or spreading the virus, the advice from the NHS is as follows:
If you would like to chat through any concerns our helpline is available Monday to Friday, 9am – 5pm. Call 0800 783 0518.
The Helpline team
This symptom is highly prevalent among people living with multiple sclerosis
Restless leg syndrome, also called Willis-Ekbom Disease, is described as an unpleasant or uncomfortable sensation in the legs along with an irresistible urge to move them. Symptoms can be described as aches, a feeling of pulling, itching or a sensation of bugs under the skin, tingling, tightness and electrical or jolting sensations. These symptoms commonly occur in the late afternoon or evening and tend to be more severe at night when you’re resting, such as sitting or lying in bed.
The condition can be disruptive to sleep and contribute to the overall fatigue, another common symptom that affects people with multiple sclerosis (MS).
Restless leg syndrome is thought to be highly prevalent among MS patients. One study, published in the journal PubMed revealed that among 156 MS patients, 51% met the criteria for restless leg syndrome based on neurological examination and medical interview.
What causes restless leg syndrome?
Research has identified specific genes related to restless legs syndrome, and it can run in families. According to NHS guidelines symptoms usually occur before the age of 40 in these cases.
There is also evidence to suggest restless leg syndrome is related to a problem with a part of the brain called basal ganglia, which uses a chemical (neurotransmitter) called dopamine to help control muscle activity and movement.
Dopamine and restless legs
Dopamine acts as a messenger between the brain and the nervous system to help the brain regulate and co-ordinate movement. If nerve cells become damaged, the amount of dopamine in the brain is reduced, which causes muscle spasms and involuntary movements.
Dopamine levels naturally fall towards the end of the day, which may explain why the symptoms of restless legs syndrome are often worse in the evening and during the night.
Restless leg syndrome can be a secondary condition that can occur as the result of a long term condition such as MS, but also if you have an iron deficiency. Low levels of iron in the blood can lead to a fall in dopamine, with can trigger restless legs.
In MSers restless leg syndrome can be related to abnormalities in neurotransmitters which help regulate muscle movements or the part of the central nervous system that controls automatic movements.
Treatment for restless legs
In the first instance, it is recommended that you should avoid caffeine, alcohol and nicotine, which are all thought to be triggers.
Regular daily exercise and a good sleep routine are also suggested treatments.
During a flare, you can try massaging your legs or taking a hot bath. Applying a hot or cold compress to your leg muscles, taking your mind off it by doing different activities to keep busy, such as reading or watching television. Relaxing exercises such as yoga and tai chi, or walking and stretching can also help provide relief.
Alternatively, there are a number of drugs that can be prescribed to help treat this unwanted symptom, such as Neurontin (gabapentin). This drug is used to treat neuropathic pain, a common symptom in people living with MS.
Benzodiazepines or benzodiazepine agonists, such as Valium (diazepam) and Klonopin (clonazepam) have been used with success in the past, but there is a risk that they can worsen fatigue. These particular drugs are used as a short term treatment because they can become addictive.
There are also medications that can increase dopamine in the brain, such as Requip (ropinirole) and Mirapex (pramipexole). If you are experiencing symptoms it is best to visit your GP or MS nurse who will be able to advise and treat you accordingly.
Multiple sclerosis blogger and influencer Martin Baum reflects on life with MS
There’s little doubt that much has changed since I was first diagnosed with multiple sclerosis (MS) back in the 80s. Today there’s more information, recognition and understanding but what does that really mean to any newly diagnosed young person? Well, if my journey through an illness with more twists and turns than the Hampton Court maze is anything to go by, not a lot.
What I still remember at the inception of diagnosis was how my mother, with the best of intentions, inadvertently began the process of putting my life on hold. She was always concerned about what might happen. My aunt, her sister, had MS. She was in a wheelchair which only added to the fear of an uncertain future for her son.
A negative ‘what if’ mindset was being formed and it was scary. Yet despite all her worst-case scenarios it took over thirty years for me to reach the secondary progressive stage of MS and writing this blog, has given me pause for thought all these years on.
A fundamental issue I have with MS is that it’s easy to forget what we can still ‘do’ and what we are able to achieve. The older we get the harder it can be to get on with life because sometimes MS makes simple tasks more difficult. But as far as it goes, the newly diagnosed youngster needs to be reminded that they are still essentially the same person as they were before being labelled.
There’s a line from Tashauna, a song by the Rossington Collins Band that goes ‘if you believe that you are weak, then weak you'll surely be’. A friend played me the song years ago at a time I was struggling with my diagnosis – it wasn’t the first time and it wasn’t to be the last where I felt I was out of my depth - but that lyric has stayed with me almost as long MS has.
Just because the worst-case could happen, it doesn’t necessarily mean that it will. Having MS is like climbing Mount Everest. Not everyone reaches the summit. For others who are at relapsing remitting, secondary progressive and primary progressive base camps it’s anyone’s guess how far up the mountain they’ll ascend. But until then, until you get there or if you get there, the only advice I would offer to any young person is this – it’s better to live a life, not MS.
MS-UK Counsellor Rachel Murray reflects on the uncertainty of living with multiple sclerosis
We travel through life with varying degrees of and awareness of uncertainty. We like it when we feel certain - it feels safe - and we don’t like the anxiety and fear that uncertainty can bring – for many of us it feels scary and unsafe.
A diagnosis of multiple sclerosis (MS) and living with MS increases the uncertainty experience! Symptoms can be unpredictable and may or may not be connected to MS. Never knowing when a relapse may come along can be daunting, uncertainty about treatment options and their uncertain long and short term effects, uncertainty about MS in workplaces, MS in family life, and MS in the future. All of these are thought about through the lens of uncertainty and may frighten and worry us.
Living with uncertainty as a constant companion can be exhausting and frightening but what if the lens is changed so that uncertainty is viewed as an adventure, as a path we did not expect to be on but as we are… then let’s see what’s around the next corner and make the most of the journey anyway. What if uncertainty becomes openness with curiosity and a willingness to see what unfolds. What if we start to welcome and embrace uncertainty because it opens up a different experience and viewpoint?
What if you meet the challenge of processing and experiencing the journey with MS by choosing the lens of adventure and curiosity over the lens of uncertainty? You may find yourself being surprised along the way.
“Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what’s going to happen next. Delicious ambiguity.” — Gilda Radner
To find out more about MS-UK Counselling or sign up, visit www.ms-uk.org/counselling.