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Climbing a mountain for MS

30th January 2015 by laura.percival

Jo Fielder

After multiple sclerosis almost took away her ability to walk last year, Jo Fielder has now set herself the challenge of climbing Mount Snowdon. And she wants to raise at least £2,000 for the MS Trust in the process.

About a year ago, I was diagnosed with multiple sclerosis. I was in a lot of pain, one side of my body had gone almost completely numb, I could hardly walk down the garden let alone up a mountain and I was petrified. This lasted for five months. After a month of respite I had another relapse and was told my MS was rapidly evolving. Mentally, I froze with fear. I was put on a powerful drug therapy which has helped enormously and my MS has largely been in remission for the last four months or so.

Knowledge is power apparently but there was little information available to help me understand my condition. Until I found the MS Trust. If I hadn’t found them, I would still be utterly flummoxed by this hugely complicated disease. Me, my friends and family are much better informed thanks to the work that they do.

MS changed my life, almost overnight. I had to give up my career, learn to cope with a whole range of weird and wonderful symptoms and completely change my outlook on life. I have a drip fed drug infusion every month to keep me on the straight and narrow and that is really starting to have some effect.

Over the past year however, my legs have developed an intermittent fault. Some days they’re completely fine, other days they feel like they’re filled with concrete and won’t work properly. They don’t feel like my legs anymore even though they look the same. This scares the living daylights out of me so I have decided to make the most of them while I can! They may never get any worse but who knows what tomorrow brings – I certainly don’t! I just feel very lucky to still be mobile when so many other MSers that I meet no longer have that luxury.

Climbing Snowdon might not sound like a huge challenge to a lot of you but I remember the days last year when a trip to the washing line looked like a marathon – trust me, this is a huge deal! I just hope that May 16th is a ‘good day’!

Find out more and sponsor Jo on her Justgiving page

Food and Fatigue

29th January 2015 by helena.jidborg

Cooking and fatigue doesn’t always go hand in hand, finding both time and energy to cook isn’t easy. Tim Jones has recently started a blog called Food and Fatigue tackling the subject of cooking when your fatigue is bad. We asked Tim to share his ideas and tips of making cooking a bit easier.

I’m Tim, I’m 34 I’m married to Chrissy and we have a daughter Hannah who’s six. I’m really young to be retired but I was offered medical retirement from the Civil Service after a twelve year career as my MS had got so bad. 16-20 hours a day in bed doesn’t go with work, neither does a failing memory!

Tim_Jones

I love cooking. The whole process, I’ve been excited by it from being a teenager having my mum teaching me to cook so I wouldn’t starve at University, to working as a chef in a pub kitchen when I was a student to just cooking good family food for years and years. However, as someone who uses a wheelchair all the time and has an EDSS score of seven this isn’t easy.

To manage this, we as a family have some ways that make things easier day to day:

  • We plan what we are going to eat in two week chunks.
  • We shop online: it saves time that we can spend together; saves money by stopping impulse purchases and means shopping is something that is done slowly and someone brings all the stuff straight into the kitchen and I can then put as much away as I can, even if that’s just items for the fridge and freezer.
  • We cook meals that we can freeze portions of. This means that on days when neither Chrissy nor I can cook, we’ve got something quick and easy to eat.
  • I use a perching stool to get me up to counter and cooker, a mini chopper to stop me taking my fingers off and cooking baskets that mean I can lift pasta and potatoes out of boiling water safely. I also have a hand blender the mashes potato too the key thing being any kitchen gadget that makes things safer and uses less of my energy.
  • I try and cook meals over the course of a day, not in one go at the end. That means I get to go back to bed between sessions.

But most importantly it’s about cooking good healthy food. Takeaways creep in every now and then but that’s always the exception. We make basics like cheese, tomato and white sauces that have multiple uses rather than buy them. Home cooked food keeps me in the best possible shape; I can control the amount of sugar and salt in my food. And yes its therapeutic. When you’re a dad who can’t chase their six year old around it hurts, but when Hannah is tucking into a meal I’ve cooked, it lifts me.

You can follow Tim’s blog or on Twitter and Facebook:

Find out more

MS and Diet
Living well with MS
MS and Fatigue

If you enjoy cooking and baking why not do a dinner party or coffee morning for friends and take part in our be Bold in Blue event? In 2014 over 200 people signed up for Be Bold in Blue and raised over £20,000 to help us support everyone affected by MS

NHS England and continence – at last, the potential for some real improvements…

28th January 2015 by alice.hamilton

In a recent blog, Director for Patients with Long-term Conditions at NHS England, launched a new initiative to improve bladder and bowel care for the millions of people across the UK who experience bladder and bowel problems.
Without any fanfare, NHS England has embarked on a programme called ‘Excellence in continence care,’ to ensure that commissioners invest in continence services. Being NHS England, they want to do this for financial reasons as much as improving people’s health, but still, we can hope for a positive outcome. Dr McShane lists four benefits of improving continence care, most of which benefit the NHS system rather than people. According to Dr McShane, improving continence care will lead to:

  • contributing to independent living and improved quality of life
  • a reduction in admissions to residential or nursing care homes
  • fewer emergency hospital admissions with urinary tract infections, pressure ulcers and catheter related infections
  • reducing prolonged use of incontinence products (eg catheters, pads etc) through interventions such as physiotherapy and medication

Why does this matter? Well, people with MS tell us that bladder and bowel problems are some of the most embarrassing symptoms anyone can develop. A fear of accidents can stop people from going out, from going to work, from trying new things, even from seeing friends and family because life is dominated by being able to get to a nearby toilet.
Unfortunately, in MS bladder problems are some of the most common symptoms, and can include:

  • Urgency – needing to go now with little or no warning
  • Frequency – needing the toilet very often
  • Hesitancy – difficulty in emptying the bladder
  • Retention – a feeling of incomplete bladder emptying

Bowel problems in MS are almost as common. These are thought to affect around half of everyone with MS at some stage, and can be even more difficult to talk about than bladder problems. Common bowel problems in MS include:

  • constipation and problems emptying the bowel;
  • faecal incontinence or lack of control over bowel opening

The good news is that if these problems affect you, the MS Trust may be able to help. Our self-management guides, Managing your bladder and Managing your bowels outline common difficulties caused by these symptoms in MS and what to do about them. Also, one of our most popular resources for nurses and other health professionals is the Practical Guide to bladder and bowel in MS, which takes health professionals through the nuts and bolts of managing common bladder and bowel problems in MS.

All of which is great so far as it goes, but it is even better to see NHS England finally take this issue seriously. Let’s hope that NHS England’s campaign for Excellence in Continence Care leads to lasting improvements in provision of continence services in all localities, so that everyone with MS who needs this help gets it. In the meantime, if any of these symptoms affect you, talk to your MS nurse in the first instance or ask your GP for a referral to your local continence service – in some areas, you can contact these services directly.

MS campaigner Trishna to feature in The People’s Strictly

12th January 2015 by Stephen

Trishna taking part of filming for the MS Trust's Making Sense of MS resourceWe’re delighted to reveal that Trishna Bharadia has been chosen to participate in The People’s Strictly on BBC One as part of this year’s Comic Relief campaign. Trishna recently helped us promote our new Making Sense of MS resources, and has been on a mission to raise awareness of MS and support others living with the condition since she was diagnosed in 2008.

Trishna is one of six participants chosen for their “tireless and selfless work which has helped change so many lives for the better”.

“I’m excited and nervous,” says Trishna. “I’ll have to undergo weeks of training, but this is a once in a lifetime opportunity and I know how lucky I am. I’m determined to make the best of this chance to raise awareness of MS on prime time TV!”

All of us at the MS Trust wish Trishna the very best of luck. The People’s Strictly will air in the week leading up to Red Nose Day, on 13 March 2015. Find out more at the BBC.

The many and varied experiences of living with MS

31st December 2014 by Stephen

Amy Bowen, Director of Service Development at the MS Trust, considers whether one person can ever fully represent the variety of MS experiences

Following the sad death of Debbie Purdy, which was reported earlier this week, I received a phone call from a man with MS. While recognising the determination and drive of her public campaign about issues of huge personal importance to her, he was concerned that the recent coverage would reinforce a perception in the minds of the public that MS is an unremittingly negative and crippling disease with an inevitable outcome of disability and premature death. He stressed, as in his own case, that this isn’t everyone’s experience.

What is life with MS like?

This is a real challenge for all of those living with MS or supporting, caring for or working with people affected by MS. How do you fairly represent the breadth of experience of life with such a fluctuating and variable condition, where the outcome for each individual is so uncertain?

Too much negativity and pessimism about the future is de-motivating and disheartening. It neglects the experience of many people who are living well with their MS and who, through specialist services, developments in treatments, accurate information and support with self-management, have real hope for a future where they can remain well.

Too much rosy optimism, though, will marginalise those who can’t or don’t benefit from treatments and whose disease imposes itself more and more on those activities that they value most.  They can feel that their experience is being ignored or, worse still, that they are some kind of unwelcome challenge to the project to change perceptions of MS.

Everyone’s experience is different

So, how can we respond to the request from the man with MS? How do we value and validate each person’s experience without trivialising or minimising the experience of another? How do we offer some balance?

For more than twenty years, the MS Trust has sought to represent a positive, practical, realistic and accurate depiction of life with MS, which respects the diverse experience of all those living with the condition, however they are affected. Our founders, a woman living with MS and a woman whose mother lived with the condition, believed that what is most important is that each person has the information, the treatments and the services they need to be as well as they can and to be as involved as they can.

Everyone with MS, however they are affected, can be actively involved in managing their health and can make the choices about their health that are right for them. Many, many more people living with MS have more options, more expert health professionals and more knowledge about their condition than ever before. Many people with MS will be able to stay well for much longer or perhaps never develop irreversible disability. This will not be true for everyone, though, and their experience is as real and as important. We must recognise that these are both truths about life with MS.

MS is a very varied condition that can have an impact on all aspects of someone’s life, not just their health.  The experience of no individual can represent this variety.  Debbie Purdy made difficult decisions about what she felt was right for her particular circumstances.  Others in a similar situation might make different choices.  Very many will not find themselves in this situation but will face a range of different choices about how to navigate through a life with MS.

As we look forward to a new year, we need to value all experiences of living with MS and to recognise the progress as well as the huge amount of work still to be done. Happy New Year and all of us at the MS Trust wish you well whatever your year brings you.

 

What is the MS hug?

30th December 2014 by jane.havercroft

Fancy a hug? Probably not from MS! The MS hug sounds quite nice – if you haven’t experienced it! It sounds like it might be friendly or cuddly… or comforting… and gentle.

In practice, it may feel anything but friendly, cuddly, comforting or gentle. It’s a tight feeling, usually around your chest but sometimes around your hand, foot or head. It may feel so tight around the chest that you feel like it’s a bit difficult to breathe. Sometimes, it can squeeze you really hard and not let go in a hurry.

The MS hug is quite a common symptom of MS but is not well known, especially to people who have just been diagnosed. It’s probably worth being aware of the possibility so that you are not taken by surprise if this symptom happens to you. It is also known as banding or girdling.

The science bit

There may be a couple of different things going on here depending on what you are experiencing. The feeling of tightness around your chest can be due to spasms in the intercostal muscles between your ribs. Some people also get feelings of aching, stabbing, crawling or pins and needles. This is a kind of dysaesthesia (meaning “not normal sensation”) and is classed, medically, as a kind of pain. As with most things in MS, it’s all due to nerve damage.

What can I do?

So what should you do if you get a band of tightness around your chest? First, think whether is it definitely due to your MS? Any chest pain has to be taken seriously just in case it has a cause that needs immediate medical attention like heart problems. Get checked out ASAP.

Secondly, relax and breath. This is easy to say but sometimes hard to do if you are being squeezed round the chest! However, it’s worth trying as being tensed up won’t help. Also, the symptoms usually pass without treatment so try and sit it out as comfortably as possible.

Some people find that a warm bath or heat pad helps. Drug treatments are available if the hug is really persistent, including those often used for other forms of dysaesthesia.

Wear a hat!

I’m not joking…. Many people say that the best way to deal with the MS hug is to distract the brain from puzzling over the feeling of tightness. Although you can’t get rid of the tight feeling, giving the brain a good reason for the feeling can stop it focussing on the odd sensation and worrying about it. So, if it’s your head that has the MS hug, wear a hat! If it’s your chest, you could wear a close fitting top. Gloves, socks or boots may help with tight feelings in the hands or feet. However, some people say that wearing really loose clothing is better – give it a try and find out what’s best for you.

Share your tips

Have you experienced the MS hug? Tell us what it was like for you. Have you got any good tips for managing it? You can write your comments in the box below.

Jane, Information Officer

Can you help us develop a website for people choosing a disease modifying drug?

19th December 2014 by Nicola Pates

Since it was launched in 2004, many people have used MS Decisions to help them choose between the self-injected drugs for relapsing remitting MS. We’re just starting on a project to redevelop the website to include the wider range of drugs now available.

We’re also taking the opportunity to review our booklet Disease Modifying Drug Therapy. Our aim is to provide a complementary set of resources to help you make decisions about the available treatments.

There’s a much wider range of drugs for relapsing remitting MS available now, so deciding which one to take is getting more complicated.  The balance between effectiveness of a drug and the risk of side effects will be a key factor, but for most people, other issues will be important such as the impact it has on daily life or plans to start a family.

Having a conversation with your MS neurologist or MS nurse is a vital first step to understanding which of the disease modifying drugs would be best for you, but you will probably need time to think it over, talk it through with family or friends and read more about your options before making a choice.

We want to make sure the new resources help you discuss starting or switching between disease modifying drugs with your MS team, so we’d really like you to tell us what information would help you.

What we are asking for

In the first instance, we’d like as many people as possible to complete a short survey. We want to hear from anyone who is already taking or considering starting as well as anyone who has taken one of the disease modifying drugs.  It should take less than ten minutes and you can do it anonymously, if you like.

Later, we’ll need a smaller group of people to help us develop new web-based information and booklets. This means trying out new ideas for the website or reading and commenting on new material. If you’d be up for this, you can leave your contact details at the end of the survey.

Take part

You can take part in the survey at https://www.surveymonkey.com/s/DMDChoices.

Pass this on!

Please let others know about this survey, we’d really like a wide range of people to give us their opinions.

5 ways learning to cook can help you live well with MS

4th December 2014 by Stephen

5 ways learning to cook can help you live well with MS

Preparing Christmas Dinner can be a daunting task for anyone who isn’t confident in the kitchen, but if you have MS there are extra challenges. Emily Carey, a Specialist Social Worker in Leeds, has spent the last 13 years supporting people with MS and gained great insight into how MS affects people.

She has set up Get Cooking, an innovative new social enterprise that aims to bring cookery to everyone. Combining her specialist knowledge with her passion for food, Emily has worked hard to reduce barriers and develop new courses that work for everyone. Here she shares her thoughts on the benefits of learning to cook good, honest food.

Emily, founder of Get CookingBeing partially deaf myself I have some understanding of the importance of making things accessible. As a Specialist Social Worker, my role included looking at practical ways of helping people with MS, being emotionally supportive, aware, understanding and often creative in terms of tackling any sort of barriers and helping people to work out support plans. Here are my top five reasons why learning to cook can help you live well with MS.

  1. Cooking is good for your mood!
    I appreciate the invisible symptoms of MS and the impact it can have on emotions. Cooking and good food is great for the soul, people can skill themselves up in the kitchen and impress friends and family with their creations, but most importantly they can impress themselves and ignite a passion for cooking.
  2. Cooking is good for your confidence!
    Confidence translates from one area to other areas. I know too well from my own background that being faced with a disability or illness can impair your confidence and challenge your status and identity. Once you’re confident in the kitchen you can carry that over into other areas of your life. Get Cooking is taught in an accessible venue with a range of equipment and positive, it’s very much a glass half full! Courses all have themes and allow people to build on skills each week.
  3. Learning to cook can make you feel more independent!
    Learning to cook inspiring dishes can give you a great sense of freedom, Get Cooking recipes have been designed with people who have MS in mind. I understand that you don’t always have the energy or the time for complications so I created simple good recipes with pictorial instructions that are easier to follow.
  4. Cooking is a great way to socialise!
    Cooking for friends and family is a great way to socialise. Attending cookery courses in a friendly group environment can reduce the feeling of social isolation. Courses all have themes and allow people to build on skills each week. It’s all about having fun – enjoying food and life.
  5. Cooking for yourself is healthy!
    Preparing meals using whole foods avoids the need to rely on ready meals or take away. Once you know how to prepare simple, tasty dishes, you will realise that it’s just as convenient to make them yourself.

To find out more about Get Cooking or to sign up for a course, visit the Get Cooking website or email Emily at contacts@get-cooking.org.uk (If you are from the Leeds area and meet the criteria for Adult Social Care services then you may be able to use direct payments to fund courses: ask Emily for more details).

For more information on living well with MS, see our free information sheet.

And see our blog post on Urban Chefs, set up by Jonathan Reen, who has MS, which offers cookery classes in your own home.

my-supper-soc-mediaAnd once you’re cooking confidently then why not take part in the MS Trust’s My Supper For MS? This is a great way to raise funds for people affected by MS, all from the comfort of your own home. Find out more and download your free My Supper fundraising pack!

 

MS Trust supports Disability Benefits Consortium on Fitness to Work assessments

3rd December 2014 by Shan Teo

We know that the government’s changes to work-related benefits are hitting people with MS hard. As you may know, as a small charity the MS Trust restricts the government policy work we do specifically to health issues.

We believe that everyone with MS is entitled to a full life, even if we don’t have the capacity to work in all areas. Around work-related benefits, we support the work of the Disability Benefits Consortium, who have far more expertise than we do. They issued a press release on 28 November around Fitness to Work assessments, which included the following statement:

“The fit to work test is failing disabled people, with devastating consequences. Wrong decisions can mean people are left with little or no support at all, in some cases struggling to pay for their homes and basic essentials like food and heating. Significant changes need to be made urgently to stop disabled people suffering at the hands of the process as it currently stands. The test has to be more than a box-ticking approach and properly recognise the barriers many disabled people face in getting and staying in work”

As its objectives, the Disability Benefit Consortium states that it is committed to achieving a benefit system that:

  • Is built on the rights of disabled people;
  • Is informed by the needs and experiences of all disabled people;
  • Is fair in its design and administration;
  • Is transparent and accountable;
  • Supports disabled people to meet the extra costs associated with disability;
  • Reflects the reality of the challenges faced by disabled people seeking work;
  • Recognises the individual needs of all disabled people (regardless of factors such as impairment and age);
  • Contributes towards tackling disability poverty and interacts with other government measures to achieve this;
  • Tackles misunderstanding about disability and the support disabled people may need from the benefit system.

Find out more:

http://disabilitybenefitsconsortium.wordpress.com/

Could you be an MS Trust sofa superstar on #GivingTuesday?

2nd December 2014 by Shan Teo

Could you be an MS Trust sofa superstar?If you haven’t already noticed, today is the first official UK Giving Tuesday. Giving Tuesday is a campaign that began a few years ago in the US, as an antidote to the Christmas shopping season, which traditionally begins for Americans on the Friday after Thanksgiving at the end of November.

Since then the idea has spread around the world, and this year charities across the UK are taking part for the first time, offering people a remedy to Christmas spending, and reminding people of the  good causes that need support.

Of course in the bleak UK midwinter, fundraising might be the furthest thing from your mind. Does the thought of running a 5K makes you reach for the ice cream bowl and the remote control? Does a a coffee morning or cake sale sound like a smashing idea… until you remember last night’s burnt cheese on toast?

Don’t worry! At the MS Trust we love everyone who wants to help. It’s never been easier to support our work, so here are three ideas that you can do from the comfort of your own sofa!

  1. Affiliate shopping – Do you do a lot of your shopping online, on websites such as Amazon, Sainsbury’s or Debenhams? Did you know we offer affiliate shopping with them, which means you do your shopping as you usually would do using a link on our website and, hey presto!, we get a percentage of what you spend, but to no extra cost to you! Easy peasy!
  2. Raise awareness online. Are you on Twitter or Facebook? If you are, please like our Facebook page and follow our Twitter account. Then you can help us share and retweet our MS-related posts. There are over 100,000 people in the UK living with MS and we would love to reach all of them and let them know about the work of the MS Trust. To do this we need your help!
  3. Spread some festive cheer by buying and sending MS Trust Christmas cards and ecards. Christmas cards were central to the founding of the MS Trust and are still play a vital part in funding our crucial work. This year we have a particularly good selection – and remember 100 per cent of profits go funding our work!

And  if you’re already thinking ahead and planning on some more energetic activities for the new year, why not check out our full range of events for 2015?