Living with multiple sclerosis (MS) is a unique experience for everyone, including the range of symptoms someone might have and or the treatments that are available to them. Medicinal cannabis is a treatment that people up and down the UK need access to, and not just those living with MS.
It was legalised for medical purposes in 2018, but unfortunately, it’s renowned for being difficult to access. This has improved over time, and we’ll be running through some of the changes in access to medicinal cannabis, which are explained in detail in our latest edition of the Cannabis and MS Choices booklet that you can read and download for free.
Despite the government legalising medicinal cannabis, getting access to affordable private prescriptions is a hurdle for many, since getting it on the NHS is also quite tricky. The methods in which medicinal cannabis can be obtained in the UK include cannabis flowers, which would be taken via a vaporiser or tinctures administered under the tongue, similarly to high-street CBD oils. Sativex is an oral cannabis-based spray that can be accessed in the UK, with detailed information inside the Cannabis and MS Choices booklet.
A new study is underway in the UK with 20,000 patients to have a further look at the benefits and clinical effects. Project Twenty21 is being led by Professor David Nutt, who also runs the organisation Drug Science, to lead studies without political or commercial influence. The study comes in response to the National Institute for Health and Care Excellence (NICE) saying that there is not enough evidence to prescribe medicinal cannabis on the NHS.
Some people living with MS may benefit from CBD products available to buy on the high street. These are made using cannabinoids and do not contain THC – the psychoactive element of cannabis – and is found in hemp. The primary use of CBD is for pain relief and is available in topical creams or as tinctures that can be put under the tongue or mixed in food and drink.
For more detailed information on the use of medicinal cannabis and CBD for MS symptoms, download our latest edition of the MS and Cannabis Choices booklet. Don’t forget, if you have questions about MS, treatments, or need emotional support, you can contact our helpline Monday to Friday, 10am to 4pm via webchat, email firstname.lastname@example.org or call 0800 783 0518.
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.
On Monday 20 September, there's two introductory sessions to our mindfulness courses. Our nine-week course is hosted by Phil Startin and here you can find out a little bit more about him and how mindfulness can benefit people living with MS.
I’m excited to be leading the Mindfulness Based Stress Reduction (MBSR) course for MS-UK. 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 Multiple Sclerosis for over 14 years. I’ve been practising 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 well-being, which 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!
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.
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 MS 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 MBSR course to make it even more relevant and helpful to those of us with MS, including a whole new session on lifestyle changes.
To take part in the free mindfulness introductory session, please contact email@example.com.
We’re so excited to announce the launch of the MS-UK Supporters’ Club and we’d love to have you join! The Supporters’ Club is a way to help sustain the future of MS-UK and the services that we provide to everyone affected by multiple sclerosis (MS). Here are five reasons why you should join today!
Easy to set up
It couldn’t be simpler to set up your monthly contribution to the MS-UK Supporters’ Club. All you need to do is fill out this form and pick your donation amount via JustGiving. It can be one of our pre-selected amounts or you can pick your own contribution. Every penny counts and goes directly towards supporting people living with MS.
Support the community
When you donate to MS-UK, you’ll be safe in the knowledge that 100% of your donation goes into supporting our services and providing them for those who need our help. A monthly contribution helps to plan the future of MS-UK, and to develop the services that the community needs so much. Whether it’s access to the helpline or the ongoing e-learning courses to support professionals and raise awareness of multiple sclerosis, your membership to the MS-UK Supporters’ Club makes all of these worthy ventures possible.
Build the future of MS-UK
MS-UK is a national, independent charity that relies on donations and fundraising to fund our counselling, helpline and online services. Without this, we wouldn’t be able to offer the support needed. By regularly donating, you’ll be having a direct impact on the progression of MS-UK and the variety of available services.
Increase availability of services
By becoming part of the MS-UK Supporters’ Club you’ll be helping us secure the availability of the services we already offer. Earlier this year, the counselling service had to stop taking referrals due to the high demand for this specialist and one-of-a-kind offering throughout the UK. One counselling session costs £50, so your membership to the MS-UK Supporters’ Club will help secure the availability of services such as this.
We understand that everyone is in a different financial position and that this can change. Your donation can be changed or cancelled at any time to reflect the amount that you’re able to give. Whether you donate £2 or £10 a month, we’re incredibly thankful for everyone’s donations to MS-UK and delighted to have you join #TeamPurple and the Supporters’ Club.
When you join the MS-UK Supporters’ Club, you’ll receive a thank you letter from us, and you’ll be kept in the loop with the latest updates from the charity to see how your donation has made a difference. If you’re unable to support MS-UK financially, why not become a Community Champion or join our Virtual Insight Panel? Every single volunteer, fundraiser and donor makes a huge difference to people living with MS and others that are affected by the life-long condition.
To celebrate International Day of Charity on 05 September, we’ve put together a blog to let you know all the different ways that you can contribute to MS-UK and support the vital work that we do for people affected by multiple sclerosis (MS).
International Day of Charity was established by the United Nations to encourage people all around the world to help others ‘through volunteer and philanthropic activities’. To learn more about this global celebration of charities and the objective behind International Day of Charity, click here.
There’s several different ways that you can support MS-UK, and we’d love to have you involved in any way that you can and become a part of #TeamPurple. Our fundraising events are a great way to achieve something amazing for a good cause whilst creating memories that last a lifetime.
From the Virgin Money London Marathon, the Three Peaks Challenge, National Skydive Day and everything in between, all of our fundraisers’ efforts are hugely appreciated and make an enormous difference. If you’d like to learn more about how you can fundraise for MS-UK click here, or contact our Fundraising team today who will support you every step of the way!
If you choose to donate to MS-UK, there’s a variety of ways that you can do this. As an independent charity, we do not receive any government funding and rely on donations. By donating, you’ll be directly supporting people with MS to live happier and healthier lives and help improve our services. From our Helpline to the specialised MS counselling that MS-UK offers, and our huge range of online activities, there’s something for anyone who needs support.
Join our Supporters’ Club!
We’re so excited to launch our brand-new Supporters’ Club! It’s a wonderful way to support MS-UK and ensure that anyone affected by MS can access the help that they need today, tomorrow and in the future. A small monthly donation can make a huge difference. From as little as £5 a month, you can help someone’s mental and physical health, helping them to live a happier and healthier life.
To find out more and set up your membership to the MS-UK Supporters’ Club, click here.
Make a single donation
If you’d like to make a single donation to help maintain MS-UK’s services, you can do so by clicking here. Just £5 can fund a chair yoga session for one hour to help support someone’s mental and physical wellbeing.
Donate at no extra cost!
That’s right, you can donate to MS-UK at no extra cost to yourself. Pick MS-UK as your charity of choice on Amazon Smile or on Give As You Live. MS-UK receives donations every time you make qualifying purchases
It’s really easy to donate via text to MS-UK, and it’s a convenient way donate on a one-off basis. Choose to give £5, £10 or £20 and you will be billed by your network provider. Find out more about how you can do this by clicking here.
Leave a legacy
Including a donation in your will to MS-UK can be a great way to ensure that future generations who live with MS get the support they need. To learn more about this, click here to access our downloadable information pack.
Win cash prizes!
By playing in the Make a Smile Lottery, you could win weekly cash prizes, all whilst supporting MS-UK and the people who need us most. You can set up a direct debit to take part each week or play as and when you like for just £1. Find out how you can get involved here.
If you’re unable to make a financial contribution to MS-UK but you would still like to be involved, there’s lots of different things you can do. Our Community Champions do important work within their local areas to raise funds by distributing donation pots. If you’re pressed for time on a regular basis, this is a wonderful way to support MS-UK.
Our events are back! Come and support #TeamPurple and become a part of the family by attending events. For more information on this, you can contact our Fundraising team today.
Without our fundraisers and volunteers, we couldn’t provide the services that we do at MS-UK. We appreciate every single one of our #TeamPurple family and the contribution that all of you have made to MS-UK. Thank you!
To be honest with you, the past eight years that I have run the London Marathon, New York Marathon, a few 10k's and swam the Serpentine (let’s not talk about that one!), I have never had a problem raising money for the wonderful charity that is MS-UK.
I am in the very fortunate position to work for Slimming World and have very large groups, therefore raising money was never an issue. I would simply set up a MS-UK table with my sponsorship forms and tins and with over 500 people walking through my doors on a weekly basis… the money always rolled in.
However, this year is very different and without being negative, fundraising has been difficult. I think people are unaware that the marathon is October, they always expect it to be in April. And for me, numbers of members at work have dropped dramatically as we worked virtually for over a year, and potential members don’t know we are back open.
Even though I have managed to raise some money, it’s not at the level I have before, and it’s really bothering me. I’ve realised that I’ve got to look at other ways of trying to get that so much needed cash for MS-UK.
A few things have worked for me. I’m not very good on social media but have started to put all my runs on my Facebook page and talking about how I’ve got to run a certain mileage and taking photos along the route and then posting them. I’ve always found that if it’s raining (which it always seems to do just as I’m going out for my run) and I take a picture of me wet, and someone will always send me some money whilst they are laughing!
I am trying to talk about it all the time and boring people stupid. I even had an estate agent over the afternoon I wrote this blog, and when he saw my medals, ‘Aha!’ I thought ... ‘An opportunity here!’. It worked, £20 in the bag!
Also, when I’ve been posting my JustGiving page, I have been adding how MS-UK really struggled through the pandemic and how they had to sell their building in order to keep the charity going, pulling on their heart strings… but sadly the truth. Another £50 in the pot.
I wish I could offer more helpful tips. But one thing I do know (though not something you should rely on), that on the two weeks up to the marathon people start to come forward a little bit more to donate, especially if you keep reminding them how far you had run that week. Also, the day after the marathon when you limp into work in your slippers, they feel so sorry for you they have no option but to hand you money!
Good luck and happy running.
Ever forget where you’ve put your keys? Struggle to find the word that’s on the tip of your tongue? Can’t concentrate? You’re not alone. Thinking and memory problems affect more than half of all people with MS and can have a big impact on your day-to-day life. The MS Trust website offers an interactive web zone to provide everyday tips and tricks to help lift the ‘cog fog’.
‘Cognition’ is the general word that covers all aspects of thinking. It includes memory, concentration, and planning. The MS Trust have developed Staying Smart for people who want to learn more about how MS affects their cognition and to take action to reduce the impact that these problems have on everyday life.
Cognition difficulties generally fall into one of six categories, so Staying Smart focusses on those to help you quickly navigate to the information you need. You can work out which type of thinking is tricky for you, and select one of the everyday problems you experience, this will take you directly to the expert advice, hints and tips you can use yourself.
The most important feature of Staying Smart is you! It gives you the opportunity to learn from other people with MS facing similar issues. On each of the six key information pages, we encourage you to add any ideas and hacks which have made all the difference to you. It might be just the thing that someone else needs to help them.
To take a look at Staying Smart to both give and get advice take a look at the MS Trust's website: www.mstrust.org.uk/staying-smart