It is World Mental Health Day and in this guest blog, Julie tells us why she took years to come to terms with her diagnosis of MS and how MS-UK Counselling has helped her…
‘To this day I struggle to think about the day I was given the news of my diagnosis. Unfortunately, it was dealt with dreadfully. I was on my own and not prepared at all. The consultant showed me my MRI scan and quite bluntly said the only thing she could think was that it was MS. I could barely breathe but knew I had to try to listen so as not to miss any information. She asked me what I was doing later that afternoon and I replied that I was due to go on holiday with my husband and daughter. She said: ‘Have a good time and try not to think about it too much.’ I couldn't believe what I was hearing, the sheer insensitivity. It took me years to accept my diagnosis and to learn to accept it.’
‘I first noticed something was wrong around 2009 whilst on a charity walk. After around 40 minutes my right foot felt wobbly and slapped the ground. I didn't take much notice and for the next few years, nothing changed much until one day when I was meeting a friend in town. I parked a way out and by the time I got to the centre my right leg really ached and I couldn't control my foot. I made an appointment with my GP who couldn't find anything much but referred me for physiotherapy. Physio had no effect and when I described the symptoms of weakness, a tickling sensation and pins and needles I was referred for an MRI of my spine. This came back as normal but the consultant decided I should have further imaging of my head and neck and it was this scan that showed the lesions.’
‘One day, my MS nurse pointed out that every year I bring up the bad experience I had when I was diagnosed, and maybe I should consider some counselling.
‘I had no reservations about accepting help and found it a relief to talk to my counsellor. My first session was comforting and I felt listened to and cared for. I felt I mattered.
‘The service has helped immensely. I have discovered I am actually stronger than I thought and have learned coping mechanisms for the times that are tricky.
‘I would say to anybody struggling emotionally not to wait as I did and to seek help. It is available, and any good GP will help, or you can self-refer. The good thing about the MS-UK Counselling service is that the people have knowledge of the disease which makes a huge difference.
‘I have also found exercise and meditation hugely beneficial in helping with anxiety.’
About MS-UK Counselling
MS-UK Counselling is confidential and open to anyone living with multiple sclerosis. MS-UK counsellors are registered or accredited with the British Association for Counselling and Psychotherapy (BACP) with knowledge of MS and its impact on mental wellbeing. MS-UK is a BACP organisational member and our number is 275169.
Register online today or call us on 01206 226500 to find out more.
MS-UK was invited to attend a medicinal cannabis event in London on Monday 16 September. The event was set up and facilitated by Medical Choices UK a non-profit medicinal cannabis and education organisation. Its mission is ‘to help bring medicinal cannabis to those who need it by educating those who can prescribe it and lobbying those who can improve access’. MS-UK’s Helpline and Information Officer, Ryan Jones and Head of Services Diana Crowe went along to find out more.
The event gave information on:
Amongst the very knowledgeable and experienced presenters was Dr Julie Moltke who qualified as a Doctor at Copenhagen University of Medicine and studied in both Stockholm and Paris. She has a strong holistic approach, a passion for mental health and is a certified yoga and mindfulness teacher. She has set up an online magazine-style website called ‘dosage’. As part of her work Julie is currently travelling the world and exploring the cannabis industry.
After the event, Ryan said, “One of the things that I took away from Julie’s presentation was to dispel the common myth that Cannabidiol (CBD) is not psychoactive. Julie said that CBD still has an effect on the brain, so is therefore psychoactive, but is best described as ‘non-intoxicating’. That makes a lot of sense and has cleared up a misconception that I held”.
We also heard from a Director of Medical Choices UK Michael Platt who is an anaesthetics and pain medicine specialist based in London. He has been a consultant and honorary senior lecturer in pain medicine and anaesthetics since 1991. He recently became the medical director at Sapphire Medical Clinics, a new clinic for medicinal cannabis. He gave a good round-up of the current evidence and data available relating to medicinal cannabis and spoke passionately about being pleased that he now has another ‘tool’ to treat pain.
Most interestingly, we also heard from Jason Jordan from Perth, Western Australia, who lives with primary progressive MS and is a medicinal cannabis advocate. Jason was the first person in Australia to have been prescribed medicinal cannabis and he described its effect on his quality of life as a ‘game-changer’. He was quite explicit about the fact that he was not a recreational cannabis user and that he had been able to manage his symptoms so much better since receiving his prescription.
Both Diana and Ryan both came away from the event feeling more informed and a little clearer about how medicinal cannabis can be accessed here in the UK.
For more information about cannabis and MS download our Choices leaflet here.
Healthcare services have been failing people with neurological conditions like multiple sclerosis (MS) for far too long. That’s a fact. The number of people living with neurological conditions in England is rising and will continue to increase. But, for a number of years now, neurology has not been a national priority for the NHS. Research shows that those living with progressive neurological conditions are experiencing delays in diagnosis and treatment, fragmented and uncoordinated services, limited availability of neuro-specialist rehab and reablement and a lack of psycho–social support.
This inequality is simply not fair.
The NHS RightCare Toolkit for Progressive Neurological Conditions has been developed to help change that and ensure people living with brain and nerve conditions like MS, Parkinson’s and Motor Neurone Disease (MND) get the care and support they need and deserve.
Seven charities (MS Trust, MS Society, Parkinson’s UK, MND Association, Sue Ryder, MSA Trust and PSP Association) joined forces with NHS experts to produce the toolkit. The hope is that Clinical Commissioning Groups (CCGs) will take full advantage of this unique opportunity; that they will use the practical, clear and innovative guidance the toolkit provides to tackle some of the big challenges people with these conditions face and ultimately improve healthcare services for this group, now and in the future.
If implemented in the right way, the numbers speak for themselves: up to 2,500 emergency admissions to hospital a year could be avoided for patients with these conditions as a result, with up to £10 million freed up to fund improved services.
So what does this mean for people with MS? The toolkit outlines four priorities that need addressing in MS care: improving the efficiency of disease modifying drug management, better use of data and technology to free up the valuable time of MS specialists, holistic support for people with advanced MS, and more MS specialists from different areas working together to provide joined-up care.
MS health professionals do an incredible job with the resources at their disposal and we know that many services are already delivering high quality care - the toolkit has real-life examples of best practice from across the country. But we want to help all areas reach the same high standard and make this best practice a reality for all. We will work closely with the other charities involved to support efforts to see the toolkit implemented effectively, with the shared aim of improving care for everyone living with a progressive neurological condition in England.
This blog has kindly been written by the MS Trust. To find out more about them visit the MS Trust website or if you’re living with MS and would like to share your experiences of healthcare, please get in touch with the MS Trust at email@example.com.
Inflammation is essential to our survival. It’s our first line of defence against the outside world. It attracts cells of the immune system to the site of danger to destroy pathogens and helps heal injury. As a short-lived response it performs excellently as protector and healer.
In multiple sclerosis (MS) inflammation is ongoing (chronic), with the myelin covering being attached by neurons wrongly identified as pathogens. The immune system attacks pathogens with oxidation. The oxidative damage causes further inflammation.
An unhealthy gut microbiome can be a source of inflammation. Boston researchers found MSer’s microbiome linked to ongoing inflammation. Luckily the microbiome is easily changed with food choices that nourish the microbiome.
Foods described below can have anti-inflammatory effects, either directly helping to resolve inflammation/oxidative stress, or indirectly by feeding our microbiome so anti-inflammatory microbes crowd out pro-inflammatory ones.
Champion foods (both direct and indirect effect)
Particularly rich dark, leafy greens contain polyphenols and antioxidants, which can directly reduce inflammation. Vegetable’s high fibre content feeds the microbiome. A small Italian trial found a high vegetable diet reduced inflammation, improved gut microbiome and helping to improve overall health.
Especially deeply coloured berries, which are potent antioxidants that can reduce inflammation. They also provide food for the microbiome, helping to keep your gut healthy. Try and make sure you are getting your 5-a-day, and aim for 10 if you can, after the NHS recently reported that 10 portions of fruit and vegetables is even better for us.
3. Oily fish
Mackerel, salmon and sardines are all sources of essential fatty acids (EFAs) omega-3s, which UK researcher found increased anti-inflammatory bacteria in the microbiome and may help directly resolve inflammation.
These are a source of required omega-6 EFA, which can be inflammatory in excess. Walnuts have a balance of omega-6 and omega-3, and research has shown they promote anti-inflammatory microbes. Research found that walnut oil reduced inflammation in a mouse model of MS.
Another great source of EFAs. Some seeds, such as flax and chia seeds have a high anti-inflammatory omega-3 content.
6. Extra-virgin olive oil
Extra-virgin olive oil is a source of antioxidant vitamin E and anti-inflammatory polyphenols. A review of multiple trials indicated that this oil could improve inflammatory disease symptoms.
Ginger has well known anti-inflammatory properties. An Iranian researcher indicated it may reduce inflammation in mice with experimental autoimmune encephalomyelitis (EAE).
It’s been in the news a lot recently and is now well known for its anti-inflammatory properties, but it has poor absorption. Consume it with healthy fats and black pepper to improve the absorption.
Indirect effect via the microbiota
9. Legumes and wholegrains
Another good source of fibre which has been found to benefit gut microbiota.
Out of the above list seven constitute the Mediterranean diet. Interestingly, the Mediterranean diet is very similar to the high vegetable diet used in the Italian study mentioned in point one. It showed an anti-inflammatory effect in MSers and reduced disability. The anti-inflammatory Mediterranean diet is being looked at by a variety of experts and particularly for people with MS.
Sharon was diagnosed with multiple sclerosis in 2007 and prompted a career change to nutrition with the goal of empowering people to take positive steps toward feeling better. Sharon aims to share her nutritional knowledge, the latest nutritional and lifestyle research and expertise from healthcare professionals. Visit Sharon’s website for more information about her and her latest articles.
Subscribe to New Pathways magazine for just £19.99 a year to get all the latest MS news, research updates and real life stories right on your doormat.
I made a promise to my dad twenty years ago that one day I would do a charity event and raise money for multiple sclerosis (MS). My dad is 83 and had relapsing-remitting MS for 40 years and I have seen first-hand how this disease not only affects the person but also the family.
So, after twenty years of procrastinating, my partner Anne-Marie and I decided to finally hold true to my word. I was already in the RideLondon-100 so we looked at MS charities for Anne-Marie. Thankfully we spoke to Jenny at MS-UK who was enthusiastic and welcoming and that sealed our decision.
I know a lot of people use charity places as a way of getting into an event they wanted to do anyway but if there was one bit of advice I could ever give someone, it would be to pick a charity that means something to you.
For all those rainy days you don’t feel like training, for all the times your bum hurts (even with a litre of chamois cream slapped over it), for all those times you are halfway up a steep hill wondering why you aren’t slouched on the couch chowing down on popcorn, knowing why you are putting yourself through this makes such a difference to your resolve and dedication.
Training went well until one sunny May afternoon, I had a collision with a car whilst out cycling. The end result was a road closure, ambulance, two police cars, a suspected broken leg, injured back and hand, stitches in the chin and my bike was written off.
Subsequent x-rays and MRIs to my hand and leg miraculously showed nothing broken. By sheer chance, the angle of my knee prevented a far more serious long term knee injury occurring so I feel incredibly lucky.
Nevertheless, I was told I would be on crutches for up to 10 weeks and that all cycle events would be out until September.
This was devasting for both myself and Anne-Marie.
To put this into perspective, Anne-Marie is not a confident cyclist. She has never ridden on her own so the thought of her cycling 100 miles solo scared her to death.
She continued to train on an indoor bike in the gym but only for an hour at a time which wouldn’t be enough to get her in shape for a 100 mile ride outside.
She also suffered far more than me after my accident. My damage was physical but Anne-Marie’s was mental. From a lack of sleep due to nightmares leaving her exhausted, from having to be my carer for five weeks leaving little time for the bike, to seeing her partner in almost constant pain, her confidence plummeted.
But this is where choosing a charity that means something to you is so important. Despite all her fears, she knew she wouldn’t pull out. It was too important a promise to go back on.
After a few weeks of mental turmoil, she made a last-minute decision to try the Tour of Cambridge on her own. A massive feat for her and one I am so proud of her for.
In the meantime, I had been rehabbing for up to two hours a day. I developed a huge admiration for people like my dad who, because of their MS, have to ‘rehab’ every day just to keep mobile and functioning.
I remember the first day I managed to do a full revolution of a pedal stroke in the gym. It took me 10 minutes to get my leg over the top of the pedal stroke and it felt amazing. Within a week I managed five minutes on an indoor bike. A week later I double that time to 10 minutes and a week later I tried 20 minutes. Each time I felt exhausted and despite the Physio telling me there was no way I would get to the start line of the RideLondon, the prospect of being there with all the other MS-UK riders really made me want to give it a shot.
Despite everyone telling me not to overdo it, I cautiously overdid it and increased my longest ride from 20 miles to 25 to 35 to 53 to 70 miles on subsequent sessions with Anne-Marie always by my side.
At the end of each ride, I felt exhausted and would fall asleep in a sweaty mess.
So here we are today. My max longest ride will have been 70 miles. I don’t feel ready for the event, my hand still hurts but I’ll give it a jolly good bash. I can honestly say if it wasn’t for the importance of the charity, I wouldn’t have tried anyway near as hard on the rehab. Anne-Marie would have certainly dropped out of the event too but she feels a connection to the charity through me and my family.
Seeing the effort families put in to helping their loved ones, seeing the effort those suffering from MS put into daily life means that you can’t help but feel motivated and inspired to put that little bit more into your own daily life.
For those who are reading this who are doing the event, I look forward to seeing you on the start line. I also look forward to seeing you (hopefully) at the finish line.
It’s all for a great cause and the journey has been unexpectedly up and down but also an amazing growing experience for both of us.
Good luck everyone and go #TeamPurple!
David Bint and Anne–Marie Cannon
Mindfulness is a bit of a buzzword and that is for good reason. With practice, mindfulness can change the way our brains work and instill a sense of calm. Far from its roots in traditional Buddhist practice, mindfulness of today is about taking your focus out from the past which we can’t change and the future which is yet to happen and putting it firmly in the present. This can be done in a number of ways from focusing on the body to the external senses.
Forgive others and ourselves
Holding on to grudges and past hurts has been likened to ‘putting your hand into a fire but expecting it to burn the other person’. It might feel like the right thing to do, but what does it really accomplish? Forgiveness is surprisingly seldom about the other person but about the feelings and beliefs that we carry with us from the precipitating event. Forgiveness is a private decision and it is not necessary to tell the other person that we have forgiven them. Of course, forgiveness of the self is just as important, as feelings of shame can be overwhelming, we are human after all and everyone makes mistakes.
Use positive affirmations
It’s easy to fall into a rut of negative talk, but by changing the wording it can have a transformative effect on how we feel about ourselves. Remember that coach from school or any other supportive and encouraging role model you have had the joy of spending time with? Be your own cheerleader – ‘you can do it, you are worthy and you are loveable’.
Set small goals and complete them
By setting ourselves small achievable goals throughout the week we can begin to see that we can do the things we set our minds to. Whether it is finishing that book, learning to crochet, phoning an old friend or putting time aside for self-care, it shows ourselves and others that we care for and value ourselves.
Keep a gratefulness journal
Log three things you are grateful for every other day, they don’t have to be big things. A smile from the lady in the newsagents, a bird on the windowsill or simply an hour of your favourite TV show. By feeling and acknowledging the small moments in our life that we often take for granted, we can start to build a more accurate model of what our life is really like rather than focusing on the negative parts.
This week the UK is set to see soaring temperatures, with most places reaching temperatures between 34-35 degrees according to The Met Office. They have also reported that the South East of England could see it rise to an immense 37 degrees. Whilst some may bask in the fact that we’d normally have to pay to experience such hot weather outside of the UK, 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, which is why we are going to give you some top tips on how to keep cool in this weather…
1 ) Wear weather appropriate clothes
Whilst wearing shorts or loose clothing are apparent ways of keeping cool, changing your choice of footwear is a good way to go 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. Switching to some appropriate sandals can help your feet 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 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. Although your own body heat will heat 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.
4) Unplug electrical plugs 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.
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.
Hi, my name is Nicky Sawyer I am 53 years old. I became aware of multiple sclerosis (MS) when I was a carer in my community as several of my service-users had MS. Each service user was completely different and they all had different stages of MS.
In 2013, my daughter Sam was diagnosed with MS and she had been having symptoms since 2011, obviously we were all devastated! Sam had her son in 2012 and although has her difficult days, she does everything for him.
Four years ago when ‘brave the shave’ was starting to really take off for women, I decided to take the plunge and shave my head, and I raised £2,500 for the MS Society!
I’ve said on many occasions that it was time I did something to raise money for MS again, and even suggested Sam and I did a skydive, but Sam wasn’t so keen on this idea! Instead, Sam asked if I fancied doing the walk over the O2. ‘Why not?’ Was my reply, but let’s raise some money! And this time we chose to raise money for MS-UK.
So with only two and a half weeks to go, I asked my friends and the customers at work to help me raise some money. Soon enough the total started to mount up! I had been sponsored for £285.50 by the time we did the walk. However whilst doing it we were approached by a lovely lady and said she would like to donate to MS-UK, she gave me £10! So I donated £5 myself to round up the figure.
Sam still doesn’t want to do the sky-dive, but I will be next year with my son, so watch this space!
I would like to thank Lucy from MS-UK for all her support and I look forward to working with her on my skydive challenge next year, and to everyone that supported me and Sam on this journey!
If you want to do something different like Nicky and Sam did, email Lucy at MS-UK or give us a call on 01206 226500 to get some information and support along your journey!
This week, 17-21 June 2019, is Loneliness Awareness Week. Introduced by The Marmalade Trust three years ago, the theme aims to remove the stigma around loneliness and combat people feeling this way. In order to do this, we need to encourage people to talk about it more.
Research has found loneliness to be an unpleasant, deeply personal experience and emotionally distressing. Loneliness can be for a longer duration perhaps when a change has occurred, or chronic if it is for more than two years. However, it doesn’t necessarily need to be for an extended period of time, it can be brief or occasional. A 2017 report even found that loneliness was as harmful as smoking 15 cigarettes a day.
Specific research into loneliness and MS has been conducted by the MS Society, which shows that out of 869 respondents, 60% said they felt lonely due to being affected by multiple sclerosis (MS). Unfortunately, this figure is up from an average of 50% of people that are affected by any disability generally. So what can we do to combat this, and how do we strive towards pushing this statistic down?
The MS Society found that 78% of people affected by MS see ‘meeting other people affected by MS’ as the most significant aspect of their local group in reducing feelings of loneliness. Such research suggests that strong local community groups are important to people with MS, so we need to continuously build on this.
Alongside the unique information that The Marmalade Trust produce, they have also assembled an interactive map so everyone can see where community events are happening nationally. This can be a great way to meet new people. To see what events are near you, visit marmaladetrust.org/law/#Interactivemap.
Understandably, not everyone will have events listed in their area. This is where we can help. Our helpline team here at MS-UK are available to talk to you, even if it’s just a chat. We would like to remove the stigma around loneliness, and it’s okay to say ‘I’ve been lonely’. We believe that nobody should face MS alone and our helpline staff are here to support you no matter what the issue is.
In 2018, our helpline supported over a thousand people and you can reach out to us knowing you will receive unbiased and professional support. The MS-UK Helpline is open from 9am-5pm, Monday to Friday. We are available to you on the telephone or online through our live web chat or email – we will support you in a way that’s right for you.
The Marmalade Trust has created a basic guide about what you can do in relation to loneliness, or what you can do for someone who you think is experiencing it. You can find this guide online at marmaladetrust.org/what-we-do/marmalades-3-step-process-to-feeling-less-lonely/.
When we looking at our new strategy, we were told that there was simply not enough support available to the MS community to overcome isolation and loneliness. We are now running a survey to find out more about these issues.
You can share your own thoughts today in our online survey at www.surveymonkey.com/r/MSUKLoneliness.
This week, 13-19 May, is Mental Health Awareness week. People affected by MS can often experience associating effects on their mental health too. Sometimes it can be difficult to understand what somebody means when they talk about mental health issues, and this is why Mental Health Awareness week exists. They aim to make discussions of mental health clearer and a foundation stronger support networks. By supporting Mental Health Awareness week, we can pave the way for greater openness when it comes to mental health, and strive to help those that are further affected by other conditions too.
We can all experience guilt, like any other emotion within our daily lives. Some people experience it occasionally, whilst others may experience it more frequently. Guilt can be a difficult emotion to identify and can often be disguised by feelings of anger or resentment. The feeling can often rear its head when we identify and perceive we have caused ourselves or somebody else a wrongdoing or harm. Guilt can leave us feeling pretty rubbish!
People living with a long-term health condition can experience the grieving process, which is not linked to the death of a loved one. Guilt can be a part of the grieving process where the person is seeking to try and find the answers to their questions of why something is happening to them and the impact that has on others.
People living with MS may experience this feeling for a number of reasons, some of which are discussed below
Most people will experience feelings of guilt at some point in their life. However, if you notice that you are constantly apologising to yourself or others this could be a telling sign that you may be experiencing feelings of guilt. Communication is key to challenging these feelings. Communicating with somebody you trust such as a family member, friend, colleague or health professional can help you to start alleviating these feelings.
If we do not recognise and process feelings of guilt this can potentially affect our mental health and wellbeing. Sometimes people may want to talk with an experienced mental health professional about their feelings of guilt in a safe, supportive and non-judgemental setting. This could be through:
Counselling or Cognitive Behavioural Therapy (CBT)
This can provide space for the person to explore and examine their thoughts and feelings. Counselling can help the person identify new ways of thinking and behaving which can improve the way they feel.
Relationship or family therapy
The whole family may want to access counselling. This may help family members understand when it might be MS that they perceive to be the ‘problem’ or ‘worry’ and when it is something else.
Mindfulness and meditation
Can help the person to be aware of the present moment where they can calmly recognise and accept their thoughts, feelings and bodily sensations without judgement. This can be a very powerful tool in helping to alleviate feelings of guilt.
You may have read this article and relate to some of what was shared. Others may be thinking that it isn’t relevant at all. As individuals we respond differently to feelings of guilt but what is important to remember is that one of the best ways to cope with feelings of guilt is to try and be as compassionate towards yourself as you would be to somebody else.
This extract was taken from issue 113 of New Pathways magazine, the MS magazine for people with MS, by people with MS.