I have been living with multiple sclerosis (MS) for thirty-five years. In 2014 I noticed that walking was becoming more difficult and my MS nurse recommended that I contacted Josephs Court, MS-UK’s wellness centre in Colchester, Essex. I attended twice a week to exercise and became a founding member of their Steering Group. Before I was diagnosed with MS, I exercised every weekday walking for 10-15 minutes to the office where I worked in London. At lunchtime I would occasionally go for a 30 minute walk if the weather was kind, and this felt like it was a sufficient form of exercise. However I was unfortunately diagnosed with MS, but nevertheless I continued exercising in the same way for another 13 years until I eventually changed jobs in 1996. By then I commuted to Basildon by car – therefore my exercise regime came to an end.
But now, I visit Josephs Court two mornings a week, for 2-3 hours each time, and use most of the equipment available. I’ve also increased my exercise since the arrival of the latest university students, as one of them has given me some rigorous exercises using the parallel bars.
Now I feel that doing gentle exercise gives me a feeling of “getting one over on my MS” – it isn’t going to stop me from doing something that I enjoy, and there is a social aspect too. We are all suffering with the same disease label yet we don’t talk about it, we just enjoy one another’s company. The social aspect means I now have someone else to talk to, and shows that I needed something to relieve the boredom of not working, as I spent three years applying for jobs with no luck.
Finally, I thoroughly enjoying working with the student physiotherapist Becca, as she has brought new ways of exercising to me. I also find volunteering for MS-UK therapeutic – it is another reason for existing and gives me purpose.
'In 2016, I was diagnosed with progressive multiple sclerosis (MS) and decided to find out more about MS-UK’s wellness centre, Josephs Court, especially when it really began to affect my balance. I visited weekly and have found the welcoming atmosphere really helpful to me, especially with things such as discussing treatments, and getting ideas and tips for coping.
'Before my diagnosis, I played table tennis to county level as an under 17 and took qualifications to become a swimming teacher. In my youth, I even became a lifeguard with the Guildford Lifeguards. Many years later I joined a gym with my middle daughter Naomi, and we used to go several times a week.
'Alongside this, we also used to cycle to the school I was teaching in and where Naomi was also a teaching assistant. It really was downhill all the way to school, but uphill all the way back. Naomi was able to cycle all the way home, but I had to walk and push my bike for some of the way. Then in 2007, I moved to Great Totham so cycling to work was no longer an option, just an 80 mile round trip to school and back.
'After diagnosis however, my exercise regime was affected, and I didn’t think that exercise would work for me as it used to. My balance was going and I could no longer ride my bike as a result. I even tried stabilisers, but I continued falling off. Subsequently, I started going to Josephs Court and at first, I couldn’t really see the point of it. I could still walk even though my balance was shaky. However, I kept going and then soon realised just how much I needed what Josephs Court could offer and help me with.
'Following this, I ordered an adult tricycle, and was amazed when I was able to get on and ride it straight away, albeit not very far to begin with. But now two and a half years later, I’m able to ride 4.5 miles most days around my home village of Roxwell. I sometimes book myself in for a six week course of hydrotherapy. I think the feeling of being able to walk across the pool with no sticks or rollator is amazing.
'Because of what services there are for those diagnosed with MS, I can’t value exercise highly enough. I have always been competitive, so Josephs Court and tricycling gave me this challenge.'
I started supporting MS-UK in 2014 when my running buddy and I decided to participate in a running challenge of three marathons in three weeks, with London being the finale of the trio. Having missed out on the ballot we were given the chance of a place with MS-UK, which was a good fit because I’ve had relapsing remitting multiple sclerosis since my late 30s. I was immediately hooked and have been fundraising for the last five years now. I’ve raised a total of £16,372.20 so far!
This year will be my fifth marathon, all of which were charity bond places with MS-UK. Each marathon has been special in its own way; two have been with my buddy Debbie Germain, one was with my husband, last year I ran with my daughter and this year I will be by myself. The trio of marathons was an epic challenge though and a very proud moment.
Without a doubt the end of the race is very special, you are treated like a superstar by the charity and they look after you as though you have just won the gold medal.
When it’s come to raising the funds for each race I’ve organised lots of different events. I have done a quiz night a few times, various raffles, I had race entries donated for me to auction, as well as a private run coaching session with Shane Benzie.
I organise a yearly Halloween and Christmas 5k night run around Greenham Common Air Base, a fantastic spectacle of lights moving around the Common in the pitch black with medals, hot soup or mulled wine at the end.
I have a Rock and Roll Bingo evening next month where you have to guess snippets of songs and cross off bingo numbers, which should be fun.
One of my more notorious fundraisers was with my buddy Debbie. We produced a Naked Runners Calendar, with 12 of our male running friends all tastefully photographed by our photographer friend, they all have appropriately placed props of course! The calendar sold for £10 and proved to be very popular.
I’d definitely encourage anyone who’s been thinking about supporting MS-UK to give them a call. They will support you just as much as you support them.
Next week will mark MS Awareness Week 2019. This year we’re very excited to be working alongside the MS Trust and the National MS Therapy Centres to raise awareness of the benefits of exercise.
We have developed a free booklet all about exercise which includes some seated exercises to help you get started. We hope you find this useful and it includes first-hand quotes from other people who have been in your position - people who can truly understand and empathise with your feelings about exercise.
The MS-UK Helpline team
Meet the Physiotherapy students Julian Chamberlain-Carter and Rebecca Wilson who are currently completing their placement and supporting the team at MS-UK’s wellness centre Josephs Court, Colchester. They are both studying their Masters in Physiotherapy at the University of Essex. Over the course of their two-year degree they must complete six placements made up of five-week increments. They were specially selected to partake in this new emerging role which is a first of its kind both at the University, within Essex, and with ourselves at MS-UK.
Julian was born and bred in Colchester, England, he comes from a sporting background and has completed a degree in Rugby Coaching and Performance. His own personal experience and use of physiotherapy sparked his interest and aspiration to train to become a qualified physiotherapist. He wants to use his skills to help others with the care and rehabilitation they require. Julian has a keen interest in neurorehabilitation, particularly in Parkinson’s Disease and is currently completing his thesis in this specific area.
Rebecca is from Londonderry in Northern Ireland, she comes from a similar sporting background after completing a degree in Sports Therapy. Her interest of the human body and her personal experience with physiotherapy inspired her to carry out work experience and work with a local rugby club, which further affirmed her interest in pursuing physiotherapy as a career. Rebecca has previously supported MS-UK three years in a row at the Virgin Money London Marathon providing massage for those competing for the charity. Rebecca’s interest varies from physiotherapy to paediatrics, pelvic health and neurology.
Together they are both at Josephs Court using their physiotherapy skills and knowledge to develop an emerging role for physiotherapy in the future with MS-UK. Currently they are evaluating the service provision and developing new pathways for greater exercise, health and wellbeing benefits. These new pathways include treatment for foot-drop, gait training, upper limb function and balance. Alongside the physiotherapy specific exercise, advise and education, the students are learning about the various services that the charity has to offer and will be attending social events, such as coffee mornings, while undertaking their placement.
Through the placement the students are hoping to leave their mark by providing a sustainable service that clients can make use of. Through the development of this placement both MS-UK and the University of Essex are looking to create a strong link to allow future physiotherapy students to complete placements with us at Josephs Court to further allow the current users to get the best possible services that we can provide.
Way back in 2016 MS-UK hosted a team from the School of Sport Rehabilitation and Exercise Sciences from the University of Essex here at our headquarters.
The team were running a trial testing the use of an Xbox game specifically designed to support people living with multiple sclerosis (MS). Since then, they have been working hard to continue exploring possibilities in this area, and yesterday I had the privilege of being invited to the MS Olympix at the University of Essex.
The day included taking part in three different games that could be played standing up or sitting down.
Sarah, who was first diagnosed with relapsing-remitting MS in 2007, attended the event...
‘After hearing about the day at a Josephs Court social coffee morning, it sounded really interesting. It is really good fun and some of the games – especially the ones that involve lifting my feet up – really helps my balance and coordination. It’s like playing the Wii at home but more fun!’
Sarah added, ‘the system comes from a background of rehabilitation, so I’d love to see it developed so people like me, living with MS, can use it at home’.
A big thank you to the team for inviting me to join in and we will keep everyone posted on future studies in exergaming!
Laura May, Communications Manager
Issue 114 of New Pathways magazine is out now. In this jam-packed edition, we take a look at the recent changes that could affect those of you who take CBD oil, on page 12. We also ask ourselves “Am I having a relapse?” Whether you’re newly diagnosed or have been living with MS for years, there will come a time when you will ask yourself this question, to find out more turn to page 39.
Page 21 offers some helpful advice to those who have found themselves caring for a friend or loved one and don’t know where to start when it comes to finding support.
Louise Willis MS-UK Counsellor talks about managing fatigue and how spoon theory can help you manage and explain it to others on page 28.
MSer and feature writer Ian Cook investigates if magnets can help multiple sclerosis in Cook’s Report Revisited on page 19.
Mary Wilson, #5 Para-Badminton player in the world, reveals her hopes of representing Team GB in Tokyo 2020 Paralympics on page 24, and discover how music therapy could help your MS on page 23.
In addition, don’t forget to read all the latest news and real life stories from MSers living life to the full and why not give our tasty free recipe a try!
About New Pathways
New Pathways magazine is a truly community led publication written by people with MS for people with MS. Each issue offers a variety of information on drugs, complementary therapies and symptom management, plus all the latest news and research and your amazing real life stories.
To subscribe, visit www.ms-uk.org/NewPathways, or call 0800 783 0518. Audio, plain text and digital versions of the magazine are available on request, simply call 01206 226500 and let us know your requirements.
In January 2016 I had a very frightening experience when my eyesight in one eye deteriorated quite quickly to the extent that I wasn't able to continue my work as a dentist. Over the next year and numerous tests I was no further forward and my eye made some recovery. Following a second episode with my other eye in 2017 I had further scans and a lumbar puncture which finally led to the diagnosis of RRMS or relapsing remitting multiple sclerosis.
I started to learn about treatments, being a medic I was sure I would follow the disease modifying therapies (DMTs) or daily injections of immunosuppressants, but I was encouraged to try another approach. My own GP put me in touch with a friend of hers who had been managing his own MS through diet and exercise, Alan Caldwell. Alan was a great inspiration to me and when I first met him he had just successfully completed the Virgin Money London Marathon running for MS-UK. This was exactly what I needed to hear at this time, I was in shock with an MS diagnosis and scared for the future. As we know no one can yet predict the outcome of your MS and indeed, it affects everyone differently, so to know that Alan was doing so well following the Best Bet Diet, an exercise regime and supplements meant I was going to look at all this first.
I embarked on the Best Bet Diet which I thought would be so difficult at first, particularly cutting out all dairy and gluten but I did it and haven’t looked back. My neurology team have also been supportive of my choices which again is encouraging.
During all the uncertainty with my health and before I had received an MS diagnosis I decided to start running. I joined local Five Star Active group based in Auchterarder and puffed and panted my way through 2 minute runs!! I was a complete beginner and whilst an outdoorsy type I had never run before. I remember the elation I felt when eventually running one dark Friday night we realised we had run for 12 minutes non-stop!!
From there I ran a 5k then a 10k. With news in December 2017 that I may be facing MS I decided to sign up for a Half Marathon as I was terrified if I didn't do it then it may never happen. So in May 2018 a month after my confirmed diagnosis I proudly completed Loch Leven Half in 2 hrs 17 minutes.
During the rest of 2018 I tried to keep my miles up and my fitness level as I started to come to terms with having this chronic disease. I was learning (and still am) when to push my body, and when to rest, how to fuel and which foods keep me healthy.
I had dark days and towards the end of 2018 my GP suggested I needed some counselling which I have received both privately and from MS-UK. The services MS-UK provide have been a source of great help for me so I am therefore delighted to be able to raise funds for MS-UK.
I was dubious about entering the Virgin Money London Marathon as I was concerned it may be too much for my MS but I have gone from strength to strength over the last year, I don't know what the future holds, none of us do, but I run and keep as healthy as possible and stay in the moment as much as possible.
In January several of my running club buddies were starting their training for the London Marathon, we have nine from our club heading south for the run, and I thought if I’m going to do it, it’s now or never. I sent a message to Jenny at MS-UK to find out if there was a chance my waiting list place would come up and after a very excitable phone call, she offered me a place.
If I had a doubt about the marathon it was dispelled that day with my overwhelming excitement about it and also how delighted my friends, family and running buddies were too.
The training is so far on track, we have a wonderful coach who has put a great programme together for me. She knows about my MS and together we monitor it, she insists on two days rest after my long run and I never run consecutive days. Having other running buddies makes it easier to motivate yourself and the MS-UK runners have also been great, we interact in a Facebook group and follow each other on Strava.
I have some fundraising events planned but most of my target has been met from my initial post on Facebook sharing my story and my JustGiving page. I was overwhelmed by the amount of support I received. Many people did not know what I was going through and the messages I received when I finally told the world gave me a huge boost.
I am excited for London and delighted to be part of Team Purple, see you at the finish!!
Find out all about fundraising and becoming part of #TeamPurple on our website today!
In our latest blog, New Pathways Editor Sarah-Jane Lampe takes a look at the Autoimmune Protocol Diet (AIP) and shares this vegan Nightshade-free Italian sauce recipe to end Veganuary on a high!
Fancy adding more tasty AIP recipes to your kitchen collection? Read more in New Pathways Magazine.
Tomato sauce is a no-no on the AIP diet, but some meals simply scream for a big, bold red sauce. For the times when you simply must have tomato sauce, try this hearty “no tomato” red sauce.
1 (15-ounce, or 420g) can butternut squash puree
8 ounces (225g) cooked red beets, peeled and chopped
3 tablespoons (45ml) full-fat coconut milk
1 tablespoons (15ml) apple cider vinegar
1 tablespoon (15ml) coconut aminos
2 teaspoons (1.5g) dried basil
2 teaspoons (1.5g) dried marjoram
1 ½ teaspoons (9g) fine sea salt
1 teaspoon onion powder
1 teaspoon dried oregano
3 cups (700 ml)
Combine all the ingredients in a blender or food processor. Blend on high for about 30 seconds, until you obtain a smooth and creamy sauce. Check the seasoning and adjust the salt to taste.
Store in a glass container and refrigerate until needed. Reheat on the stovetop over low heat, stirring frequently.
The sauce will keep, covered, in the fridge for up to five days. It freezes well. Serve with basil zucchini noodles.
Fatigue is one of the most common symptoms of multiple sclerosis (MS) and it can often feel overwhelming during the cold and dark winter months. However, with the help of the MS community, we’ve gathered together a few tips and techniques that may help you through!
Firstly, though it may seem counter-intuitive, moderate exercise has been shown to improve resistance to fatigue. Now, we are by no means suggesting that you run a marathon, but a small amount of regular walking, swimming, or yoga, among many other options, could make a positive difference in the longer term. For more information on exercise, please see our Choices leaflet.
Looking after your mental wellbeing is also important. Activities like meditation, mindfulness and relaxation, as well as just being aware of the need to factor in time for rest, are tips that the MS community have shared with us in relation to managing symptoms. This self-aware approach is particularly useful when it comes to fatigue because taking the time to plan activities and daily patterns, as well as breaking down tasks into manageable chunks, can really make things less daunting on a day-to-day basis.
It may seem like a bit of cliché, but we can hardly talk about the usefulness of exercise without also talking about healthy eating. It is well known that eating a balanced diet helps people to maintain good health and feel their best, while poor diet can lead to fatigue. This is no less true when it comes to MS. Supplements, including B12, Co-enzyme Q10, Vitamin D and Omega 3, can also contribute to reducing fatigue, though we suggest speaking to your GP or neurologist before taking anything new. For more information, please see our Choices leaflets on Diet and nutrition and Vitamin D.
Other therapies that some people with MS have found to be helpful include acupuncture, oxygen therapy, and Action Potential Simulation (APS) therapy. Oxygen therapy is widely used across the UK in the many MS therapy centres and those who regularly attend sessions have found that it can greatly improve fatigue levels. To find your nearest therapy centre, use our website.
You can read and download all of our Choices leaflets on our website.