On 25 September, it's International Ataxia Awareness Day. Dr Gretchen Hawley has written this piece to help you understand what ataxia is and some recommended exercises that you can do if you live with this condition.
Ataxia is described as a lack of muscle control and coordination of movements due to damage to the spinal cord and/or cerebellum, the part of our brain that controls balance. One of the most obvious ways ataxia presents in people who have multiple sclerosis (MS) is walking with an unsteady or staggered gait. This may mean that you have a widened stance, irregular foot placement, and abnormal distance between each step. Fortunately, there are many therapies and strategies that can be beneficial to improving ataxic gait.
Physiotherapy exercises can help improve and maintain function/movement. General guidelines, when performing exercises, are to incorporate motor control exercises. For example, practicing standing up without falling backwards or coordinating arm and leg movements while taking a single step. Additionally, balance and aerobic training can help improve motor control as well as fight fatigue. You can find several ataxia exercises here. Exercises should generally be performed for at least 20 minutes, 4 days a week, if your body can tolerate it. Remember that quality is more important than quantity.
General guidelines for exercising as well as moving around your home or community with ataxia are:
- Do one task at a time. Avoid multitasking.
- Make sure you’re stable after standing and before you take a step.
- Focus on quality of movement rather than speed.
Neurologic music therapy (NMT) and rhythmic auditory stimulation (RAS) have also been found to be effective therapies for ataxia. NMT is the culmination of music therapy, neurology, and brain sciences and is classified into 20 scientific and evidenced-based music interventions. The techniques are applied using music and rhythm to directly affect cognitive and physical function. RAS is considered to be a type of NMT and is defined as a therapeutic application of pulsed rhythmic or musical stimulation in order to improve gait or gait related aspects of movement. These treatments have been found to be effective in facilitating the prediction of motor timing and gait rhythm, ultimately resulting in improved foot placement and less staggered gait.
Finally, implementing “modified independence” during your day-to-day activities can be an effective way to improve coordination as well as safety. This means using a mobility aid, such as a cane, walker/rollator, trekking pole(s), etc. Using any of these aids can result in the ability to accomplish your tasks, such as walking around your home, climbing stairs, performing chores, but while ensuring maximum safety. Personally, I enjoy having my clients use a rollator while practicing walking so they can focus on foot placement and leg coordination, rather than additionally having to focus on balance. There’s no need to focus on everything all at once. Modify at first to allow your brain to focus on fewer components. Then, as you get stronger and improve your coordination, you may be able to take the mobility aid away.
If you'd like to learn more about MS-specific exercise, you can attend our monthly information sessions with Dr Gretchen Hawley. Find out more and sign up to our next session here.
by Martin Baum
Recently, I was invited to be a contributor for a Q&A article about staying active with MS. Although I have blogged extensively about living life not MS – an issue which connects positively with the many MSers who follow me - this was the first time I had specifically been asked my thoughts about exercise and exercising.
In so far as it goes for one man and his stick, my idea of a physical workout is being taken to the local park by my wife/carer as regularly as my health and the weather dictates. What else was there for me to contribute? Well, as it turned out, quite a lot more than I had initially given myself credit for and this is how.
Aside from my limited bodily activity, I try to do the best I can. It is all about keeping to a regular routine, pretty much the same as for anyone else going to a gym. As any MSer can attest, with something as demotivating as this energy-sapping, soul-destroying illness, it is just so easy not to bother. Some say 'What is the point? I cannot do it. I will not do it. I have MS!'
However, I can and do because there is a point. It is called structure, setting goals. Mine was taking a daily walk of a modest distance which inadvertently, led to an unexpected change in my diet. It didn’t just happen. It wasn’t MS, it was me. Eating too many of the wrong things was causing me to gain weight, making me breathless sometimes and causing a dip in my energy levels. I knew I had to do something.
I call it the Rocket Science diet or, rather, it isn’t. Whilst I wasn’t a great consumer of 'treats' per se, such as bread, biscuits, crisps, chocolate or alcohol for example, I decided to eliminate everything except fish, meat, fruit, vegetables and water from my diet on an ongoing trial basis. Has it been easy? Well, yes, given that this was something I felt was necessary in my limited capacity for taking responsibility for my health and welfare. It’s also given yet more structure to my life. More goals to achieve.
However, there was something else which I unintentionally neglected to include in the article - meditation, which was something I had already been doing for some time and was inextricably a major part of my daily structure.
MS is a sponge which just keeps absorbing and can leave MSers vulnerable, both physically and emotionally. I am no exception. Meditation, though, helps me achieve mental clarity, focus and, to quote Pink Floyd, “comfortably numb”. Since I have begun practising meditation, I believe I can stay one step ahead of MS or, at the very least, keep abreast of it.
Whilst I accept the combined holy trinity of diet, exercise and meditation is not for everyone, I passionately believe that doing something is better than nothing be it diet, exercise, or meditation. Take your pick. Think of it as living life on your terms instead of being at the behest of the life limiting conditions set down by MS.
Failure is Not an Option is a phrase associated with the Apollo 13 Moon landing mission and it should be something for all MSers to aspire to. By doing something is one less thing for a carer, physio, therapist, or neurologist to take responsibility for. To put it more succinctly, if an MSer cannot at least try to do the best they can for themselves, then why should anyone else?
It’s your MS, own it.
Jon Dean has always been a fan of exercise and sport. When he recieved his multiple sclerosis (MS) diagnosis, he thought he could no longer do the things he loved. Here's his story...
Exercise, they say it’s good for you. Throw MS into the mix and it can feel like an impossible task at times. I was always a keen footballer in my teens, I wasn’t particularly good but I loved to play and worked hard to get better. As a goalkeeper, I loved making saves. MS has made my hands constantly numb and one of the worse things for a goalkeeper is to lose their grip. So despite a few attempts to play since I was diagnosed 11 years ago, the gloves and boots will have to remain hung up.
My other fitness passions were going to the gym and running. I had to give up my gym membership 11 years ago as we needed the money due to moving home and our first child was on the way. After years of going to the gym six to seven times a week, I was no longer exercising and my neurologist believes that, and the stress of moving triggered my MS diagnosis. I don’t regret that decision as it could’ve happened regardless and being a parent is the greatest accomplishment in my life.
But 'use it or lose it' has often resonated with me so when things improved financially, I returned to the gym. It was tough. Over a year off, I’d lost so much strength and the added symptom of fatigue made even a 30 minute workout near impossible.
I persisted. I’m glad I did as I’m a fan of playing the long game, my patience is pretty good and eventually I started to feel fitter. Fitness improving with exercise is obvious I know but MS fatigue is something worse than just feeling out of shape so when I started to notice my fatigue had lessened, my morale was in a really good place.
Fast forward to 2016 and whilst I was watching the London Marathon like I do every year, I had always dreamt of taking part but wrote off my chances due to my MS. The commentator then said “if you’re ever sitting there watching and thinking you want to take part but can’t, just apply and see what happens” so that’s what did. One year later I fulfilled a lifelong dream and thankfully the cameras didn’t catch my ugly crying face when I crossed the finish line! I’m so glad I pushed myself.
Four years later I’m still running two to three times a week and still going to the gym five to six times a week. I’ve got RRMS and I feel lucky that I can still do most of the things I did before my diagnosis as one day, things might worsen and I have to look for a different form of exercise. I truly believe finding an exercise that you enjoy can help you mentally as well as physically and my MS is in a good place as a result of that.
I’ll keep going, keep on running and keep making sure I exercise.
Do you ever wonder if you’re doing the appropriate exercises to help you reach your goals? Or maybe you’re wondering if improving your strength and mobility is even possible with a progressive condition like MS?
The information sessions with Dr Gretchen Hawley, will not only answer those questions, but they’ll leave you feeling empowered and informed. You’ll understand the process your brain goes through to create new neural connections, resulting in improved strength and movement. You’ll also learn appropriate exercises and techniques to improve your balance and muscle tightness, leading to better function in your day-to-day activities.
Dr Gretchen Hawley is a physiotherapist and Multiple Sclerosis Certified Specialist. Her expertise in MS-specific exercise and wellness strategies often result in her clients feeling more control over their MS. Her tools and strategies are easy to understand and implement into your daily routine.
The sessions covered so far have reviewed neuroplasticity and brain changes with exercise, how to exercise to improve your mobility, fatigue management, and spasticity management.
If you would like to know more about our upcoming information session by Dr Hawley, please click here.
This week, 10-16 May is National Vegetarian Week. Diet can have an impact on multiple sclerosis, and some people use it as a way to contribute to the management of the condition. Click here to read more about diet and supplements with our Choices booklet. Here, this recipe for stuffed aubergines is a great swap packed with protein and tasty vegetables for a meat-free meal. Why not give it a go this week?
1. Preheat the oven to 220°C fan. Cut the aubergines in half and place on to a baking tray. Score the flesh with a knife (being careful not to cut all the way through), drizzle with olive oil and salt, and roast for 35-40 minutes until soft. Once soft, remove from the oven and leave to cool.
2. Turn the oven down to 180°C fan. While the aubergines are in the oven, cook the quinoa. Place a medium saucepan over a medium heat and add the quinoa and boiling water. Bring to a simmer and cook for 12–15 minutes until the water has been absorbed. Once cooked, remove from the heat and leave to one side until cool.
3. Using a large spoon, scrape the flesh out of the aubergines and on to a board. Roughly chop into pieces then put into a large bowl. Add the tomatoes, balsamic vinegar, pine nuts, harissa and quinoa. Season with a large pinch of salt and pepper.
4. Using a tablespoon, scoop equal amounts of the mixture back into each aubergine skin. Place them back on the baking tray and bake in the oven for 20 minutes. Sprinkle the parsley on top before serving.
From Deliciously Ella Quick & Easy: Plant-based Deliciousness by Ella Mills (Yellow Kite, £19.99).
It is a pleasure to be able to put together a series of masterclasses around exercise and education in MS. I spend a lot of time working and educating people around their symptoms and seeing the effects that MS has on their bodies, whether walking, sitting or tasks of daily living. By helping people have better knowledge and understanding about their MS symptoms, it allows people to have more independence and improve their quality of life.
As a Level 4 Exercise Coach for Long term Neurological Conditions, I have been working with people with MS and other neurological conditions for the past nine years and if you have been following our online classes or joined in one of the many information sessions from our fellow professionals, you will be building a wealth of understanding that will help you on a day to day level, reduce symptoms and help maintain a more stable condition.
People with MS experience different symptoms with their condition from muscle weakness, fatigue, spasms, numbness/ tingling, difficulty walking, coordination, balance issues, are just a few symptoms associated with MS. One of the many symptoms I am asked about is foot drop, the inability to lift the toes and flex the foot at the ankle. Many of you may have found yourself walking normally and then after some time your foot starting to drag or catch on the floor, maybe having more trips and falls, a high stepping gait or throwing the leg out to the side when trying to walk.
During the next masterclass, I will address some of these areas and demonstrate some exercises that can be beneficial for foot drop. I will talk about types of equipment that can be used like foot drop stimulators and foot orthosis that assist for the foot drop condition.
The exercises will help to support a better functional capacity and help maintain a more neutral foot position. We will also look at the global effects that it has on the rest of the body when sitting, standing and walking itself.
If you like the sound of this masterclass, please come and join us! To register for the session, please click here. There is a suggested donation of £5, but you can donate any amount from £1 to attend.
Every month, our online masterclasses offer insight to different topics and special areas of interest that have been suggested by participants who attend our exercise classes. The masterclasses complement our weekly online exercise classes which take place every Tuesday and Thursday from 11am. The aim of each masterclass is to focus on a chosen topic area that people have identified as needing to know more about.
The masterclasses are led by Alan Pearson, our level four exercise specialist who has nearly a decade of experience providing exercise prescription as a means of managing the symptoms of multiple sclerosis (MS). Alan structures each masterclasses to first provide the understanding behind the theory of a problem such as foot drop and then demonstrates techniques to help manage the issues experienced through the use of exercise.
Our next masterclass is on Friday 16 April at 11am, which is second in the series of our online masterclasses where we will be focusing on corrective stretching. If you would like to know more about the session or how to register, click here.
See below some of the feedback we have received from our masterclasses that have taken place so far
“I thought the session was nothing less than brilliant. So practical, so reassuring, and so understanding. Alan is amazing.” – Jackie
“Alan's balance masterclass was excellent. I can't tell you how very helpful it is to get these insights into how our brains and bodies work together and the effects that damage can have and how we can work to maintain and improve those links. They are really motivational too.” - Sarah
“It’s so helpful to learn about what’s going on in the brain and body and to understand more about the links between them. It’s obvious that Alan knows his stuff.” - Lisa
A healthy and balanced diet is essential for everyone, and as March is National Nutrition Month, we’re sharing how diet can affect multiple sclerosis (MS).
Many people use their diet to complement other therapies, and there’s no ‘one size fits all’ approach to managing MS. Typically, inflammatory foods are known to be a trigger to the gut and result in a sometimes unhealthy gut microbiome, which can worsen the symptoms of MS. Whilst inflammation generally is the body’s barrier against infection, for people living with MS, it can be painful and ongoing as the myelin neurons are incorrectly recognised as pathogens, thus the inflammation continues and oxidation results in damaged cells.
However, your food choices can impact the levels the inflammation and can be a way to control the way in which your gut reacts. Fruit, vegetables, oily fish, and nuts and seeds are great direct anti-inflammatory foods.
Several diets have been specifically designed for people living with MS. There’s the Overcoming MS (OMS) diet, The Swank Diet, the Wahls Protocol, and the Best Bet Diet, to name the most notable options.
The OMS Diet is one of the most popular amongst MSers that are using diet to help manage their health, and it follows a largely plant-based diet, with the addition of fish. It is built from the foundations of the Swank Diet, which encourages a low consumption of saturated fats. Kellie Baron reveals how the OMS Diet helped her MS after she was diagnosed with MS in 2013.
At the time Kellie was working part-time due to fatigue and other MS-related symptoms. Several relapses eventually led to diagnosis, by which time she had just discovered OMS through a random Google search of the exact words ‘Overcoming Multiple Sclerosis’. She attended Professor Jelinek’s one-day conference in Brighton in 2013 where she learned all about the OMS Recovery Program, and the science behind it, and adopted the recommendations immediately.
“The diet was a huge change because I was eating absolute rubbish before that, lots of meat, dairy and saturated fat,” she said. “But it was like a switch went on in my mind. I don’t miss the old way of eating. I’m cooking a lot now which I never used to do before, and I’m eating amazing food.”
Since adopting the OMS way of life, and choosing to take the disease modifying drug Copaxone, Kellie has remained relapse free and seen improvement in her general health. Her Expanded Disability Status Scale (EDSS) score has dropped from 2.5 down to 1, with blurry vision in one eye her only remaining symptom.
“I’m back at work full-time now, have had promotions, and I’ve run a triathlon and cycled 100 miles,” she said. “The fatigue has gone, the numbness has gone, and I’ve had no more relapses. It has made such a huge difference to my life.”
There are also similar stories like Kellie’s from followers of The Best Bet Diet and Wahls Protocol, but one thing they all have in common is reduced fat and clean eating.
For more detailed information about these MS diets you can download our free Choices booklet surrounding the topic of diet and supplements. Always consulting your GP, neurologist and MS nurse before making any changes to any disease modifying drugs.
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!
These simple, veg-packed soups make perfect warming winter lunches
Cauliflower and coconut soup
1 small onion, peeled and chopped
1 small garlic clove, peeled and chopped
3 tbsp (45 ml) olive oil
½-in. (1-cm) piece fresh ginger, peeled and grated
1 small cauliflower, washed and chopped
1⅔ cups (400 ml) water
⅓ cup (80 ml) coconut milk
Salt and pepper
1½ tsp gomasio
3½ tbsp (20g) cedar pine nuts
Cook the onion and garlic in a little of the olive oil in a large saucepan over low heat, until the onion is translucent. Add the ginger and cook for 1–2 minutes, until golden.
Add the cauliflower and remaining olive oil and cook until lightly colored.
Pour in the water, bring to a boil, and season with salt and pepper. Lower the heat and simmer gently until the cauliflower is cooked. Blend with the coconut milk to make a smooth, creamy soup. Serve the soup hot in bowls, sprinkled with the gomasio and cedar nuts.
King kale soup
1 small yellow onion, peeled and chopped
1 garlic clove, peeled and chopped
1 tbsp (15 ml) olive oil
1 medium-sized head broccoli (about 14 oz./400 g), washed and chopped
About 10 kale leaves, washed and shredded
3¾ cups (880 ml) water
⅓ cup (80 ml) coconut milk
Salt and pepper
Green scallion (spring onion) tops, washed and very finely chopped
Edible flowers, washed
Cook the onion and garlic in half the olive oil in a large saucepan over low heat, until softened but not colored. Increase the heat to medium-high and cook for 1–2 minutes, until the onion is golden.
Add the broccoli and kale to the saucepan with the rest of the olive oil, season with salt and pepper, and cook for a couple of minutes.
Pour in the water, bring to a boil, and simmer until the vegetables are tender. Add the coconut milk and blend everything together to make a smooth, creamy soup. Serve the soup hot, topped with chopped scallion tops and edible flowers.
Extracted from Wild Recipes: Plant-Based, Organic, Gluten-Free, Delicious by Emma Sawko (Flammarion, 2020).
Photography © Greta Rybus