MS-UK Trustee Phil Startin is inviting you to come and discover the benefits of mindfulness with us
My name’s Phil Startin and I’m one of MS-UK’s trustees. I’m excited to tell you about the Mindfulness Based Stress Reduction (MBSR) course I’m leading for the charity.
For me, it draws on three important and consuming parts of my life – my own meditation practice, teaching the MBSR course to the general population and to people with multiple sclerosis (MS), and living myself with primary progressive MS (PPMS) for over 14 years.
I’ve been practicing mindfulness meditation for over a decade now, and have gone from being really quite sceptical of it (“hippy tree-hugging” was my view of meditation before I started), to it being an important part of my life and a really positive contribution to my health and wellbeing. This is why I started teaching mindfulness.
So, what’s helped change my view of mindfulness? Well, there is now considerable medical evidence of the benefits of mindfulness in alleviating stress and anxiety, and that stress and worry can contribute to exacerbation of MS symptoms, relapses, progression of the condition, and perhaps even to the on-set of the condition itself. I know that mediating makes me feel better and has helped me deal with some of the huge changes in my life since diagnosis, and if it can help improve the trajectory of this degenerative condition I have, then fantastic!
Help with symptoms
Mindfulness has also helped me deal with some of the symptoms of MS. I think regardless of when you were diagnosed and where you are on your MS journey, typically those of us with MS need to deal with the unpredictability of the course of the condition in terms of disease activity and relapses, as well as progression. But we also have to deal with the wide-ranging uncertainty around future physical and cognitive levels, with the associated impact that these will have on many aspects of our life – dealing with loss of function and the impact this has on our hobbies and careers, and how it affects our relationships – with our partners and family, and our friends. This includes too our relationship with ourselves and who we are, our personal values and goals, and our relationship with the condition itself. Pain and spasticity can also arise and have a significant impact on day-to-day life.
Coping with change
Symptoms vary widely from person to person and all these changes can be frequent and dramatic at one extreme, or almost imperceptible at the other, but living with changing ‘norms’ is often part of the MS lived experience. I’ve personally found mindfulness helps me deal with the consequences of living with this condition, and recent research indicates mindfulness can improve the ‘quality of life’ of those with MS, enabling us to live better with many of the symptoms.
I started my MBSR teacher training at Bangor University over six years ago now, and am still supervised by a member of the staff there. For this MS-UK MBSR course we have made some modifications to the standard course to make it even more relevant and helpful to those of us with MS, including a whole new session on lifestyle changes.
The feedback from the first two pilot course was very positive, and I’d be delighted if you could join me on Monday 01 March 2021 at 11am for an introductory talk about mindfulness and more details about this course and another mindfulness course that MS-UK is offering.
To register, please visit the MS-UK’s webpage www.ms-uk.org/mindfulness-introductory-workshop.
On Wednesday 17 February 2021 we celebrated Random Acts of Kindness Day. To commemorate the day, we asked the multiple sclerosis (MS) community to share your stories. Here's what you said...
'This random act of kindness took place long before the pandemic - 40 years ago - but due to my MS and memory loss - I now experience this random act of kindness of the event through old photos I found while cleaning for lack of anything else to do during this pandemic. It sounds like a sad story but had a happy ending due to a wonderful doctor who cared.
'My wedding was all planned but my mother was was very ill and the doctor cared - he told us how much it meant to her and us for her to be there and helped us move up the wedding to the hospital chapel and all was arranged - even had music!
'Mom was there, all dressed up, guests too - doctor came too - dressed up - Mom died 10 days later. I am still married 40 years later to my hero...and trying to pass kindness forward.'
'After a long day in London, I used the Underground to catch my connection north. I had to change lines at some point, and the distance between stations was much greater than I’d anticipated. The further I walked, the more bent my posture became, until I was literally using the surface of walls to help me keep upright.
'I was passed by hundreds of racing commuters, possibly thinking I was drunk. I staggered on for a few more yards, following signs for the lift. When it appeared out of order however, I simply gave up, and slumped to the floor, wearing my best suit. Again, I was passed by many people, and at this stage I was feeling like a well-dressed busker and tearful!
'Amazingly, a man returned carrying drinks and a cupcake from Costa. To give me the refreshments, he must have passed me, exited the underground station, entered a Costa store to buy the items, and then retraced his steps, going against the walking traffic. I thanked him profusely after initially refusing his offer, and asked for his details in order that I could thank him properly. He refused, left me with the refreshments, and quickly disappeared again. I was speechless.'
'As two of my family members lived and died with MS prior to my diagnosis, I was well aware of their management techniques. Following my diagnosis, I declared instantly to doctors and nurses in the hospital that I was going on a diet avoiding saturated fats and milk.
'One day, all the patients were given their breakfasts of cheese sandwiches on the morning of my kindness day - so I left mine untouched and went back to sleep. Upon waking up, I saw a thick salami sandwich on my bed stand - although the kitchen did not have any dietary replacements that day.
'Other patients told me that a night nurse left me with her meal before going home. She did not wake me up, but left me her meal after a night 12 hour shift looking after patients. At the time, I was the only one at the ward being able to slowly wash myself and go to toilet. All other patients needed non stop care through the night and day. She must have been exhausted, hungry and not in a mood to "cure" MS by avoidance of cheese! Still, she decided that morning to be kind, supportive and selfless - saying nothing in the process.
'I will never forget such kindness in my time of sudden schock...please join me in wishing every blessing to "my" nurse.'
Thank you to everyone who shared your positive stories with us for the day and tuned in to our Facebook Live event.
You can find out more about why we celebrate kindness by visiting our Loneliness and Isolation Report webpage.
To commemorate Random Acts of Kindness Day 2021, we have designed a pack of postcards to help spread kindness far and wide.
In 2019, we began to research the issues of loneliness and isolation in the multiple sclerosis (MS) community. We found that 71 per cent of people affected by MS in the UK experience these issues, or have done in the past.
Our findings from this research also told us that the MS community believes in the power of kindness and friendship, and we should be sharing this message widely. So, whenever we have a chance to do this, we will!
There are many organisations in the world promoting kindness. Here are some we have found - do let us know if you think of any more we can add, just contact us with your suggestions...
Love a good puzzle? You’re in luck – here’s our roundup of free ways to give your brain a work out
It’s National Puzzle Day – a great excuse to flex those brain cells and help improve cognition.
It’s often said the brain is like a muscle – you need to use it to not lose it. And keeping sharp cognitively is important for people with multiple sclerosis (MS) because memory, planning, decision making, understanding, concentration and attention span can all be affected by the condition.
A 2016 study looking at brain training versus ordinary computer games showed that both improved overall cognitive function. Training consisted of one hour a day, five days a week for 12 weeks. The brain training group used a cognitive remediation training program where patients were instructed to play a series of games and tasks, compared to a placebo program of ordinary computer games. The brain training group showed nearly three times the improvement than the computer games group. Both groups were able to take part from their own homes rather than attend a clinic, which was beneficial to all.
So while we’re all keeping safe at home, why not get stuck into an online puzzle and give your grey matter a workout? We’ve rounded up five of the best sites for all your puzzle pleasure.
Even the most fanatical puzzler would struggle to get through Braingle’s more than 15,000 puzzles, riddles, problems and brain teasers. Plus, you can submit puzzles and riddles yourself, and the site’s active community of more than 20,000 users are constantly adding new content so you’ll never get bored.
Since the Japanese puzzle game Sudoko hit our shores a few years ago it’s been a roaring success and it’s hard to find a newspaper that doesn’t carry a grid or two on its puzzle pages. But you don’t have to wait for the paper to arrive to get your fix, Sudoku.com has you covered.
The Word Search
Or if words are more your forte, you’re bound to love a good wordsearch. Website The Word Search has a fantastic collection of word search puzzles and they post new ones pretty regularly, so once you’re hooked you may as well bookmark it to feed your wordy addiction! Plus, you can use their word search making tool for free, meaning you can hit your friends up with some of your own clever creations and help them fall down their own wordsearch wormholes.
Sometimes there’s nothing more satisfying than completing a good old-fashioned crossword. Well, if that’s the case, head over to Boatload Puzzles, which claims to be the home of the world’s largest supply of crossword puzzles – 40,000 of them, in fact. Brush up your brain skills and have fun at the same time!
Even the humble jigsaw can be played online. Any fan will attest to the fact that getting lost in a beautiful picture puzzle has a meditative effect on your mind and mood. Head to Jigsaw Planet and get that spatial awareness up to speed in no time.
For more information about cognition and MS, download our free Cognition Choices booklet here Cognition Choices booklet
Dean Jeffreys, Online Programmes and Project Manager, explains MS-UK’s new national service and why you should get involved
Hello! I am the newly appointed online programmes and project manager here at MS-UK. I have the pleasure of launching our new and exciting online service for 2021. I have been working at MS-UK for just over three years now, and I will be using this experience to deliver and offer a wide range of online activities for the multiple sclerosis (MS) community.
This year, we will begin by launching our online exercise classes that are accessible for all abilities, and showing you how to get the most out of exercising from home. In addition, we will be starting other new classes and courses that will be the core offering from MS-UK. This includes mindfulness courses, chair yoga sessions, and our peer support service that will help you connect and stay socially active with others.
As we move forward in the year, we will be adding many more activities that you can get involved in. This includes live information sessions on topic areas such as diet and nutrition, symptom management, and complementary therapies. We will also offer alternative activities to those that get you physically active, including sessions on things such as poetry classes and arts and crafts.
As with everything we do at MS-UK, it is community-led, so if you have suggestions for activities you would like to see us hold online, you can email us email@example.com and tell us what activities you would like to see in the future.
Online exercise classes
Starting in January 2021, we have our new online exercise classes, with six classes taking place every week on a Tuesday and Thursday from 11am. The classes are structured in a way that will make them accessible for all.
The classes themselves have been specifically designed to help people stay active at home, and will be delivered by our Exercise Specialist, Alan Pearson. These classes will give you the confidence to manage your wellbeing independently by attending the classes and practising the exercises in your own time.
How the classes are structured
Find out more
Please visit our website page www.ms-uk.org/ms-uk-online to see what we have going on and to book a class. If you have any questions and would like to know more about what we are offering, please email firstname.lastname@example.org or call MS-UK on 01206 226500.
Thank you for reading and I hope to see you in a class with us soon!
Deborah Searson was diagnosed with multiple sclerosis during lockdown… She is sharing her story to help others who may find themselves in a similar situation
This is my story of how I became diagnosed with multiple sclerosis (MS) after the shock and realisation had set in, I realised life doesn’t stop and for me, the way through was to put into writing my experience with a little added humour.
I woke for work at 6am on a Spring Saturday morning in late April 2020, I stood and stumbled slightly, probably due to the few red wines I’d had the night before (or so I thought) I went back into the bedroom and stood in front of the mirror to put on a little makeup. As I stood there, I was trying to focus my eyes on my face and just couldn’t get a clear picture. How many wines did I have last night? My job involves me at times being in a senior role and that day was one of those, Great! I had no choice but to go in, with the Coronavirus very much part of my job, I had to go and make sure everything and everyone was OK. I only managed to stay an hour or so.
Once home I slept hoping when I woke up it would have resolved itself but it hadn’t. Whilst this was happening, we were in a full lockdown due to Coronavirus, I rang the eye clinic at a local hospital and asked if they could see me. What I’d noticed is that it seemed to be double vision I was having, where images were on top of one another not side by side and that it did return to normal if I closed one eye? They were unable to see me due to pressures at the hospital so I left it a few more days hoping that it would resolve by itself.
I eventually managed to get an eye examination at an Opticians but this was done at a social distance and they told me they thought that I may have Strabismus now to anyone that is not an optician, meant I had cross-eyes! What? How? Why have I never noticed this? They said I would need to wear a Prism on my glasses which would help restore normal vision, but they couldn’t give me one due to the pandemic.
A few more days passed and the double vision was starting to make me feel like a drunken sailor ready to walk the plank, I remember texting one of my friends who also works at the same place as me and they somehow managed to get me an eye clinic appointment (lifesaver literally).
So eventually, looking like an extra from Pirates of the Caribbean, with my eye patch on, secretly enjoying the daily fancy dress, I got an eye clinic appointment and, on the photos/scans they’d taken of my eyes, they said there seemed to be high pressure on the optic nerves and I would need a lumbar puncture. After which I was diagnosed with Idiopathic Intracranial Hypertension.
Over the following month, I began to feel worse by the day and in late May 2020, I was in and out of the hospital, sent home each time with what they thought was Gastroenteritis.
It wasn’t until I went for a follow-up eye clinic appointment in June 2020 the consultant brought up the latest MRI scan results showing I had extensive inflammation on the brain. I was kept in hospital and given steroids, it was here that the words multiple sclerosis were first spoken to me. In all honesty, I’ve worked in the medical profession for the last 15 years and I didn’t really know much about MS. The MS Society website helped me get to grips with it and reading other blogs made me feel less alone.
I have launched a blog and if anyone would like to read further about my journey with some humour added in you can visit, Youregettingonmylastnerve.co.uk
The theme for this year’s International Day of People with Disabilities is as unequivocal as it gets, ‘not all disabilities are visible’.
The message is not unique as anyone who is already aware of the Sunflower Lanyard scheme can confirm. But more than that, from a gradual decline in my own circumstances over the last year, I’ve noticed a change in the attitude I experience when I am out and about, and it is this. People are more aware. Kinder. And understanding.
Nowadays, my motor skills sometimes scrape the bottom of the multiple sclerosis (MS) barrel. Messages from the brain to my legs get embarrassingly confused and play merry hell with my centre of gravity. I have to confess that these days it is less than easy to walk a straight line without my feet taking me on a journey to the left or the right of the pavement, whether I want to go or not.
People still stare, sometimes. After all, it’s only human nature. But these days not in a way that makes me feel like I am an exhibit of P. T. Barnum’s circus. In restaurants or coffee shops my knees sometimes struggle to support my body weight when I try to rise from the table.
It’s not the most pleasant of experiences but it happens, of course, it does, but that’s when I endeavour to wrestle control over a situation where I have none at all. Because the MS is mine it’s up to me to reassure the crowd – and I do still have the ability to draw one – that everything is fine because this is not the first time it’s happened to me that day.
To carry an expectation – or even a grudge - against others for not understanding my sometimes muddled speech or incontinent thought process is not who I am. Or at least not anymore. Why make strangers feel uncomfortable? It’s nobody’s fault I have MS and I will tell whoever needs my reassurance that everything is under control. That everything is ‘cool’.
Being an MS blogger has put me in a position of MS privilege. I am at the coalface of disability activity. I am the embodiment of disability action. I no longer have the need to hide my disability behind my cabbage stalk walking stick. I wear my sunflower lanyard as a badge of honour.
I am Martin Baum. I am a proud MSer.
Head on over to the MS-UK Facebook page and like and share our posts for the International Day of People with Disabilities. Help us raise awareness of the hidden symptoms of MS - www.facebook.com/MultipleSclerosisUK/
When I was diagnosed with multiple sclerosis (MS) at 23, I was so scared and lonely and in quite a dark place. It was a huge deal for me – I’d only been married for a year and was at the beginning of my career as a nurse. My parents took it very badly, and it was a big, big change for me.
Early on in my journey, I was prescribed antidepressants. They help keep me on an even keel.
Having MS, there are times when I feel very lonely. It doesn’t matter how many people I have around me, I can still feel very alone. Unless they have it too, your loved ones and friends don’t really understand what you’re going through.
Old friends worry about meeting up with me. They wonder how bad I will be – whether I’ll be able to walk or whether I’ll be in a wheelchair.
I do spend a lot of time at home alone, but my little dog helps me enormously. She’s like my shadow and my best friend. Having her, with her unconditional love, has helped me so much. Pets help so much when you’re lonely.
Knowing the MS-UK Helpline is there when I need to talk makes me feel supported.
This year MS-UK's Christmas appeal is raising money to support our helpline, which is here to support people living with MS when they need it most. Our research shows that 71% of people living with MS feel lonely or isolated because of their condition. By working together with MS-UK, you can help these people feel less alone this Christmas.
Alice Bardwell is looking for mobility scooter users to take part in research – can you help?
Hi there, at Proteus Research we are looking for participants to help with a research study about mobility scooters. The object is to better understand the needs of users, their expectations and the potential for design development.
Participants will be asked to complete a diary for one week, noting the ways in which they use their scooter day to day. The diary will be sent via post and a stamped addressed envelope provided.
There is also a possibility that they will be asked to take part in a one hour phone or Zoom interview in order to discuss their usage and provide feedback on the pros and cons of their machine and any improvements they would like to see.
For each part of the study (the diary and the interview) participants will receive a cash payment of £100 as a thank you for their time and help.
This project is being conducted on behalf of a well-known automotive manufacturer looking to enter the mobility scooter market with a new model.
The study commences on November 2 with the diary. The interview part will take place around the middle of November. We'll let you know after the first stage is complete if we would like you to take part in an interview.
Proteus Research is an independent market research company based in UK and a member of the Market Research Society. We are bound by the industry Code of Conduct under which all data collected is treated confidentially and the anonymity of participants protected.
If you would like more information about our company please visit our website at www.proteusresearch.eu alternatively you can contact the Market Research Society on 0500 396 999 who will confirm our status as a legitimate market research agency.
If you would like to take part please contact Alice on the details below
07879 483 041
Amanda has been smashing her fitness goals with MS-UK's online exercise classes
I thoroughly enjoy MS-UK’s live exercise classes via Zoom and Facebook. Pre-lockdown, I attended their Colchester-based exercise classes in person and I missed them. Initially, the Wellness Coaches provided recorded exercise videos on the MS-UK YouTube channel, which I enjoyed and followed, but I was even more delighted when the team said they would be offering live classes via Zoom and then Facebook for people with multiple sclerosis (MS).
Exercising with others and feeling part of a community is always more fun and more motivating than exercising alone. I’m so thankful for the support and inspiration and I feel so much better physically and mentally when I have made time for exercise and know that I have done my very best.
Fun for all
Alan’s classes are fun and very easy to participate in! They are largely based around seated exercise and are therefore accessible to all of us, despite our different levels of restrictions. The class content provides lots of variety and progression exercises for those who are more able. I find that I am able to progress more in the upper body classes than the lower body classes, which I find much more challenging, but other MSers may find the opposite! Alan always reminds us to work to our own level – work as hard as we can but manage our fatigue level and never work through pain.
It’s easy to use technology to access the classes. The advantage with the Facebook Live classes is that they are recorded so you do not have to watch them live to participate, although I do if I can, because I like the sense of engagement. However, I have often watched and followed them later in the day if I was busy, or re-watched them and repeated the exercises at other times, to practise a specific exercise group or fill a gap in my diary. I like the flexibility that the delivery of the classes offers.
Specifically with the Facebook live classes, it’s amazing to see that MS-UK is able to reach MSers all around the world. We are very lucky to have the support we get from MS-UK and it’s fantastic to see that others may benefit when they don’t necessarily have such resources in their home countries. It’s great to extend the reach of the MS community too... as I’m exercising, I like to think that others around the world are doing the exact same thing and we’re “fighting the MS fight” together.