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"I consider myself fortunate because my symptoms are fairly mild"

Posted on: October 15 2020

Christine.jpgChristine was diagnosed with MS just over 20 years ago

I was diagnosed with MS just over 20 years ago. I consider myself fortunate because my symptoms are fairly mild, which enabled me to work full time until I retired last year.

The reason I am leaving a legacy in my will to MS-UK is influenced by my nephew Philp who had primary progressive MS and has now passed away. Philip lived in his own property with the support of carers until he died in 2017. I like the fact that MS-UK give information and support to people diagnosed with MS to help them live as independent a life as possible.

Get in touch:

To find out more about leaving a legacy to MS-UK please contact our Fundraising Manger Jill Purcell via email at jill@ms-uk.org or on 01206226500

Visit www.ms-uk.org/Gifts-and-Legacies

What Will be your legacy?

Posted on: October 15 2020

Jill Purcell, Fundraising Manager at MS-UK explains how leaving something on your will makes an incredible difference iStock-175196412.jpg

Leaving a gift in your Will is an incredible way for you to help MS-UK plan for the future, pass on a gift to the next generation and ensure that no one has to face MS alone.

Every gift, no matter what size will have a huge impact on our services for years to come.

Events this year may have made you think more about how to make sure that the people and causes that mean the most to you are looked after. After you have looked after your family and friends we’d be incredibly grateful if you would consider leaving a gift to MS-UK.

Why leave a gift? 

By putting people affected by MS at the heart of our work, we can make sure that every person who leaves us a legacy is honoured in the right way. We are an independent charity so we never accept funding that may jeopardise our ability to act in the best interests of people affected by MS. By leaving a gift in a Will to MS-UK, people hand down their legacy to the next generation. We could not be here for people affected by MS without this support.

Making a Will

We know that it can be difficult to know where to begin when writing or updating a Will, so here's some information about getting started which we hope you find useful. It's important to remember you do not need to face this alone and by speaking to a legal professional you can be supported through this process. By having a Will you will provide security for your loved ones. A Will is a legally binding document, so you can have peace of mind that your wishes will be carried out.

Legal advice

Making a will is a straight forward process. The first step is to seek support from a qualified solicitor or a member of the Institute of Professional Willwriters to help you get started. You can always take a family member or friend with you to appointments. A simple Will can cost between £144 and £240. If you have a more complex Will or require specialist services, the cost can go up to about £600. It really does depend on your individual circumstances, but you can compare quotes from a few solicitors before going ahead with anything.

What our clients say…

Our mission is to improve understanding of multiple sclerosis and provide support where it is needed most. Every gift that is left means we can offer our services to more people.

“For over 18 years (since being diagnosed with MS) of this journey, New Pathways has been like a friend by my side.”

Our counselling service gave hundreds of telephone sessions to people across the UK

“You just understand how I’m feeling.”

Every legacy we receive helps make this work possible. 

“You have got me through some dark times. I hope you will be around for many more years.”

Last year we answered hundreds of enquiries through our helpline. Every time we picked up the phone, we were able to be here for someone affected by MS.

Get in touch:

To find out more about leaving a legacy to MS-UK please contact our Fundraising Manger Jill Purcell via email at jill@ms-uk.org or on 01206226500

Visit www.ms-uk.org/Gifts-and-Legacies

The flu vaccine and MS - what you need to know

Posted on: October 13 2020

Laura Amiss-Smith (No Background).pngLaura from MS-UK’s Helpline has the lowdown on this year’s flu vaccine

The flu vaccine is offered to anyone with a long-term health condition and this includes multiple sclerosis (MS). It is free on the NHS.

The flu vaccine is not a live virus and therefore cannot cause you to have the illness. There are different types of flu vaccine and you will be offered the one that is more effective for you, depending on your age. Sometimes people may feel an ache in their arm, but if you experience cold or flu symptoms, then the chances are it was already in your system.

Covid-19

This year it is seen as even more important to vaccinate against the flu due to Covid-19. If Covid-19 cases continue to rise, higher cases of flu could potentially overwhelm NHS services.

People with MS are more at risk of becoming unwell with flu. Having the vaccine not only reduces the risk of getting flu but, if you do catch it, it is likely you will have a much milder case.

You may have already been contacted by your GP surgery to book in for a flu jab. If not, then contact them to make an appointment. If you are worried about visiting the GP surgery in the current climate, perhaps speak to them to see if they are able to make a home visit.

If you are a carer of a person with MS, you are also eligible for a free flu vaccine.

Precautions

If you are having a relapse, you’ve recently taken steroids for a relapse or are taking certain disease-modifying therapies then you may need to discuss having a flu vaccine with your medical team. Precautions may be needed in these cases.

Specialist MS neurologist, Professor Gavin Giovannoni, says on his research blog that he is hopeful the behavioural changes we have made around Covid-19 will also have a positive impact on the figures for flu. Social distancing, wearing masks, and washing and sanitising our hands much more will help to prevent the spread of flu.

One thing he highlights is that if you are a severely immunosuppressed person with MS (you have recently been treated with alemtuzumab or HSCT), and have small children, please make sure they do not have the live nasal flu vaccine at school. This could expose you to flu via the live vaccine.

For anyone worried about having the flu vaccine, Professor Giovannoni also says that it is the most studied vaccine in people with MS and it has been shown to be safe, and it does not trigger relapses and/or MRI activity.

Diets and supplements for MS

Posted on: October 12 2020

Lots of people choose to manage their MS holistically through diet and lifestyle

iStock-1130112004.jpgA well-balanced, healthy diet is important for everybody to maintain optimum health. Many people diagnosed with multiple sclerosis (MS) have questions about whether changes to their diet and nutrition can assist in symptom management. Although not conclusively proven, between 50% and 75% of people with MS have made changes to their diet.

Although there is little existing research looking at diet in MS, a recent study using information from nearly 7,000 people with MS from North America, has concluded that a healthy lifestyle and diet are associated with lesser disability and symptom accumulation. The data from this study shows a convincing observational link between diet and disability.

Several diets have been created with MS in mind. Similar themes run through these diets and most involve reducing saturated fats, taking supplements and restricting or eliminating food groups. It is always suggested that you consult your GP, neurology specialist or MS nurse before starting to take any supplements or making any changes to your diet. Below you will find an overview of a selection of the more popular diets and additional information about MS specific dietary research and supplements.

The Swank diet

The Swank diet recommends a reduction in consumption of saturated and unsaturated fat which can be found in meat (particularly red meat) and processed foods, dairy and products containing dairy. The diet recommends reducing the amounts of saturated fat to less than 15 grams a day and having 20-50 grams a day of unsaturated fat (such as olive and flaxseed oils). The Swank diet also recommends cod liver oil and vitamin supplements.

The Overcoming MS diet

Drawing on the Swank research and learning, Professor George Jelinek’s approach focuses on a largely plant-based, very low saturated fat diet, with omega 3 supplements in the form of coldpressed flaxseed oil. Professor Jelinek was diagnosed with MS in 1999. His mother also had MS. The Overcoming Multiple Sclerosis (OMS) diet has been in existence for over 15 years, and is constantly being worked on as more evidence is gathered.

The Wahls protocol

This diet is based on key elements of the paleolithic (or paleo) diet. A paleolithic diet is based on foods similar to those that would have been eaten during the paleolithic era. A paleo diet typically includes lean meats, fish, fruits, vegetables, nuts and seeds – foods that could be obtained by hunting and gathering.

The Wahls protocol eliminates sugar, processed foods, grains (wheat, oats, rice), soy, dairy, eggs, potatoes, tomatoes and legumes (beans and lentils) and increases the intake of grass fed meat, fish, fruit, vegetables (especially green leafy vegetables) and plenty of fat from animal and plant sources, (especially omega-3 fatty acids). The Wahls diet is quite prescriptive about the amounts of certain types of food to eat. The protocol says that a follower should eat six to nine cups of non-starchy vegetables a day and four ounces of protein (fish, specifically twice a week).

The Best Bet diet

This diet is based on the theory that an autoimmune process is ignited by undigested food proteins escaping through the gut wall into the circulatory system. The immune system sees these proteins as invaders and starts to attack. This is referred to as ‘leaky gut syndrome’.

The Best Bet diet focuses on four main areas; foods to avoid, foods to eat in moderation, foods to increase and the use of supplements. The Best Bet diet says that stopping, or restricting the consumption of foods that have a molecular structure similar to myelin, reduces the autoimmune response.

Read our Diets and Supplements Choices booklet for further information on this topic. You can download it from our website, or order a printed copy.  Find out more

Share your story to win a respite holiday

Posted on: October 12 2020

Revitalise Holidays is inviting carers and their offering the chance to win a seven-day respite break as part of its #CareForCarers campaign

BRPhoto_Revitalise_Netley2015-133.jpgRevitalise wants to thank all home carers for their dedication and endurance and is calling on them to come forward and tell their lockdown and beyond stories.

The Revitalise 500 Competition wants to hear all about the highs and lows of 2020 – just write up your experiences in no more than 500 words, making it as descriptive as you can. The piece can take the form of either a story or a poem.

The winning entry will be chosen by a panel of celebrity judges, including BBC Radio 2 DJ, Mark Radcliffe, actress and presenter Samantha Renke, Endeavour actress, Carol Royle and Paralympic Gold Medalist, David Smith MBE. Second and third place entries will be awarded £250 and £150 Revitalise vouchers respectively, these can be put towards your next holiday or spent at the centres.

Step 1

Choose your preferred format
1. A Short Story of up to 500 words or
2. Poem of between 250 and 500 words

Step 2

Create a masterpiece that tells your story of lockdown and beyond.

Step 3

Email your entry to 500@revitalise.org.uk Revitalise will accept a spoken word recording from those with different abilities. Or post it to 212 Business Design Centre, 52 Upper Street, London, N1 0QH.

Submit your entry before midnight on Friday 6 November. Don’t forget to include your full name and address, your email or contact number and the names of those in your family you would like to mention. Also include a photo of you so they can put a face to the name.

Revitalise Holidays is the UK’s largest specialist provider of respite holidays with care and activities for families that have a seriously ill or disabled loved one. We cater for over 150 conditions including Alzheimers, Huntington’s, multiple sclerosis, Motor Neurone Disease, Cerebral Palsy and Paraplegia.

Visit www.revitalise.org.uk

Mental health resources and links

Posted on: October 12 2020

Thank you to everyone in the MS-UK community who got involved with our World Mental Health Day event on Saturday 10 October. We just wanted to bring all the resources together in one handy place, so anyone can access them in the future. 

Here's a list of links for the resources. If you would like any support, please get in touch. MS-UK is here for anyone affected by multiple sclerosis (MS) and you can reach us on 0800 783 0518 or by contacting us via our online web form.

Blogs about mental health resources

Read our blog about mental health organisations

Read our blog about mental health professionals

Read our blog about mental health apps

Read our blog about cognitive behavioural therapy (CBT)

MS-UK mental health services

Find out more about MS-UK Counselling

Find out more about our Single Session Therapy pilot

Our Loneliness and Isolation Report

This year we commemorated World Mental Health Day by sharing the findings of our Loneliness and Isolation Report. You can find out more about this piece of research by reading the full report below or visiting the web page

Read the report (PDF version)

Mental health organisations

Posted on: October 10 2020

Across the UK, there are a range of mental health charities and organisations offering support and information. Here we have listed some well-known organisations which you may find useful.

For a longer list of organisations that specialise in certain areas, visit the NHS website.

What to do if you need urgent help

The NHS urgent mental health helplines provide 24-hour advice and support for anyone living in England. You can find a helpline number using the NHS website

If you feel you or someone else is at risk of serious harm or injury, please call 999. 

Mental Health Foundation

The Mental Health Foundation aims to help people understand, protect and maintain their mental health. The offer community and peer programmes, undertake research, give advice to people affected by mental health conditions and campaign for change.

Visit the Mental Health Foundation website

Mind

Mind provides advice and support to empower anyone experiencing a mental health problem. They also campaign to improve services, raise awareness and promote understanding. They run an Infoline, a Legal Line and produce publications about a wide range of mental health issues. 

Visit the Mind website

Local Mind organisations

Across the UK, Mind have a network of independent local Minds that are run by local people, for local people. They provide support like advocacy, counselling, housing advice and more.

Find your local Mind

Rethink Mental Illness

Rethink Mental Illness offer a network of 140 local groups and services and they offer expert information via their website. They also campaign to make sure everyone affected by severe mental illness has a good quality of life.

Visit the Rethink Mental Illness website

Samaritans

Samaritans offer a 24-hour helpline that anyone can contact if they are struggling with their mental health. You can call them any time, 365 days a year, on 116 123 for free. Samaritans also accept email enquiries, letters and have a self-help app on their website. 

Visit Samaritans website

Sane

SANE provides emotional support, guidance and information to anyone affected by mental illness, including families, friends and carers. 

Visit the Sane website

More information about MS and mental health

You can read our Choices booklet about MS and mental health online today or order a printed copy.

Visit the MS and mental health web page

Who to ask for mental health support

Posted on: October 10 2020

Image saying 'mental health professionals' with a green ribbonSaturday 10 October 2020 is World Mental Health Day. Here at MS-UK we are reflecting on the findings of our Loneliness and Isolation Report, hoping to bring these important issues into the light.

We are also sharing mental health resources live throughout the day on our Facebook page (join us on Facebook between 10am - 3pm). 

There are a number of health professionals who can help to support you if you are experiencing mental health issues.

Talk to your GP

This is often a good starting point if you are feeling anxious, having trouble sleeping or beginning to worry about your mental wellbeing. It can be difficult to start this conversation but your GP will be able to offer advice and refer you on to mental health services if they feel it is needed. Your GP may mention the IAPT programme, which stands for 'Improving Access to Psychological Therapies. You can find out more about IAPT on the NHS website.

Talk to your MS nurse

MS nurses are familiar with multiple sclerosis (MS) in a way that means they can spot signs of low mood or depression, sometimes before you notice them yourself. Talk to your MS nurse if you have any worries and they will be able to signpost you or refer you on to other support. 

Counselling

Counsellors do not offer advice and will not tell you what to do but can help you to talk about your experiences to make it easier to find a way forward. MS is an unpredictable condition and learning to live with this uncertainty can be challenging. Counsellors can help you to explore how MS may be affecting your wellbeing and how you are adapting emotionally.

MS-UK Counselling is a telephone service that is available to anyone with a diagnosis of MS. You can register online for MS-UK Counselling or ask a health professional to refer you. If you would like to try face-to-face counselling, check if your local MS Therapy Centre or local MS Society group offers this. You can also search for a therapist through the BACP website

More about MS and mental health

You can read our Choices booklet about MS and mental health online today or order a printed copy.

Visit the MS and mental health web page

Mental health apps

Posted on: October 09 2020

Image of a green ribbon with the words 'mental health apps'Mobile phone or tablet apps can be really useful for supporting your mental wellbeing, so this World Mental Health Day we take a look at what is available in the app store at the moment.

At MS-UK, we believe in offering people affected by multiple sclerosis (MS) as much information as possible, so you can make your own informed choices. That's why we have listed as many apps as possible, but which ones you try out are up to you. Where we can, we have also included links to the app websites. 

You can download any of these apps via Google Play or the apple store straight to your smartphone or tablet.

Aura

This app helps people manage their emotions and get a restful nights sleep. It gives options to subscribe for personalised mindfulness meditations as well. The idea behind the app is to find strength and rest through using Aura when you feel stressed or anxious. Visit the Aura website

Breath 2 Relax

This app is all about managing your breathing to reduce stress. It features instructions and practice exercises to help users learn the stress management skill called 'diaphragmatic breathing'.

Catch It

This is a free app that helps you manage feelings of anxiety and depression by turning negative thoughts into positive ones.

Chill Panda

Another free app, Chill Panda measures your heart rate and suggests tasks to suit your state of mind. Visit the Chill Panda website

Headspace

This app is all about developing a mindful approach. It includes guided exercises, videos and meditation. Find out more on the Headspace website

Insight Timer

This is a free meditation app, with paid features you can subscribe to as well. Visit the InsightTimer website

My Possible Self

This app has simple learning modules to help you manage fear, anxiety and stress and tackle unhelpful thinking. It is free, but has some in-app purchases as well. Visit the My Possible Self website

Side by Side

This is Mind's online community, which used to be called Elefriends. It is a forum where you can listen, share and be heard thorugh posting, commenting and private messaging. Visit the Side by Side website

SilverCloud

This is an app that offers a free eight-week course to help you manage anxiety and stress, designed to be completed in your own time and at your own pace. You can find out more about the course on the SilverCloud website.

Smiling Mind

This app lets you track your mood for free and access targeted mindfulness practices. The app suggests you spend 10 minutes a day to help bring more balance into your life. Visit the Smiling Mind website

Togetherall

This is a free online community, offering digital mental health support for anyone aged 16 and over. You can find out more about the forum on the Togetherall website.

WorryTree

This free app aims to help you take control of your worries, one at a time. It helps you record, manage and solve your worries based on Cognitive Behavioural Therapy (CBT) techniques. Find out more on the WorryTree website

More about World Mental Health Day

On Saturday 10 October, MS-UK is posting live on our Facebook page to commemorate World Mental Health Day. This year, the theme for the day is 'mental health for all' and we are sharing the findings of our Loneliness and Isolation Report to highlight how important mental health support is for people affected by multiple sclerosis. 

Follow our page on Facebook to join in

Read the Loneliness and Isolation Report

“Abstention from unhealthy food and drink was not something I ever took to”

Posted on: October 08 2020

Martin profile 4.jpgMSer Martin Baum on how his wife transformed him from a junk food devotee to a healthy eating guru, all without him realising

Over the years, there have been many health and wellbeing disciplines I have tried to help me in my relationship with multiple sclerosis (MS) including swimming, lifting weights, exercise, yoga, pilates, mindfulness, meditation and even crystals. But not diets. Abstention from unhealthy food and drink was not something I ever took to, even though it was known to help fix a body with a faulty immune system.

Gradual change

Over the years I have been as difficult as a sulky child that ‘didn’t do vegetables’. My long-suffering wife and carer Lizzy can quite easily attest to that and yet, despite my resistance, over the years, our lifestyles had changed through happier circumstances. We moved to the coast, began regular beachside walks and, whilst I wasn’t really aware of it, were eating more healthily. Lizzy’s approach to encourage my change in attitude was gradual and by stealth, but it worked.

During 21 years of coastal living, a fresh respect for myself began to dictate how I wanted to engage with life. I returned to writing, which was once my living until MS thought otherwise. After regaining an ability to put one word once again in front of the other, I began blogging for various MS organisations.  

My surprise

Yet in all that time it never occurred to me how much my life had changed through healthy eating until, quite by chance, I was invited to an Overcoming MS (OMS) promotional video launch at the House of Commons. It was quite an event, where I was introduced to some notable people. Also, astonishingly for me, was the realisation that for several years I had inadvertently been following most of the OMS seven-step recovery programme.

Because I’m a creature of habit, I can never throw myself blindly into something new and this was no exception. However, as exercise, meditation and mindfulness were part of the OMS system, this was a way of life I had already been practising for a while, so I was very much in my comfort zone.  

The biggest surprise, however, was how much I already had in common with the dietary requirements that were part of the OMS lifestyle programme, such as removing all meat and dairy products. Whilst I baulked at that ‘all or nothing’ edict, what I realised – and this really was a pleasant surprise – was that Lizzy had ensured we had already been doing just that by steadily reducing our intake. It also made me realise that instead of consuming a diet that at one time included Domino’s pizzas and McDonald’s, now eating fish and fresh fruit and vegetables are very much part and parcel of what defines us, as much as it does OMS. Of course, this did not come as any surprise to Lizzy who, thankfully, cared enough to introduced the changes without me really being aware.

She has never been one to announce big changes, that’s not how it is when it comes to caring for someone as awkward and pernickety as me. My wife was never going to adopt a carrot and stick approach to get me to eat more healthily because she knew all the time that I would take the stick over the carrot, especially if it was a French one and had a rump steak in it.

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