Skip to main content Skip to navigation

MS Trust Blog Home

A ski trip with a difference: Sarah’s Monster Ski experience

28th August 2014 by laura.percival

Sarah Burgess

As we look forward to the next Monster Ski in March 2015, Sarah Burgess who took part in this year’s ski challenge in Chamonix tells us what it was like to be part of this unique fundraising event.

As soon as I heard about Monster Ski I knew I wanted to take part! I am an avid skier, and the challenge of skiing the equivalent vertical descent of Mount Everest for three days in a row sounded just awesome! A little daunting, perhaps, but surely the chance of a lifetime. The MS Trust is a charity close to my heart – my husband was diagnosed with Primary Progressive MS about six years ago – so I didn’t hesitate to sign up!

The first challenge

The first part of the challenge was the fundraising, although it was actually a lot easier than I expected. I found it helped to break it down into smaller chunks, that way it didn’t seem so daunting. I did all the obvious things first – set up my fundraising page with Virgin Money Giving (which was actually really simple), then set about emailing all my friends, family and colleagues, linking in with my Facebook account, and generally badgering people!

Then I planned a series of fundraising events. We held a party on bonfire night, sold Christmas cards, did a collection in the local pub and made cakes. The single most successful event for me was a pub quiz – in addition to the funds raised through selling tickets, we held a raffle on the night and ended up raising over £500. Plus it was great fun! As long as you give yourself plenty of time, and plan events that you (and your friends) enjoy, it is surprisingly achievable.

Excitement kicked in

I have to admit to being a little apprehensive when I first arrived at Heathrow Airport, not knowing anyone or what to expect, but as soon as we all started arriving, swapping stories and getting to know each other, any trepidation rapidly vanished and excitement kicked in!

We were very well looked after the entire time. On arrival in Geneva we were met and quickly transferred to our hotel in Chamonix, which couldn’t have been better placed, right in the centre of town. I found myself sharing a room with another solo female participant, and we were both ecstatic to walk out onto our balcony and see the most amazing view of Mont Blanc!

The group comprised a complete mixture of people, some travelling together, some alone, many with personal links to MS (including one amazing guy who has MS himself and completed the entire challenge – probably skiing quicker than anyone else in the group). Despite the various different backgrounds, the group gelled incredibly well and many new friendships were made.

We skied from first lift to last

The three days of skiing were full-on and exhausting – certainly a challenge, and one which wasn’t made any easier by the slushy spring snow conditions. We split into two groups with Beatrice and Fred, our lovely ESF guides, and they monitored our progress to ensure we all covered the required vertical distance. Lunch and loo stops were speedy, and we literally skied from first to last lift each of the three days!

Other than one minor injury (a slight altercation with a snowboarder!), we all survived intact, and on the last evening were presented with our ‘awards’!

The trip was jam-packed from start to finish, with no time for Glühwein stops or sunbathing! Having said that though, the camaraderie was excellent and everyone returned home feeling accomplished and proud of our achievements. Some people added on a few days at the end, for a more leisurely experience of the Chamonix slopes – certainly a good idea if time permits, particularly if it is your only ski trip of the season.

I would certainly recommend this trip to anyone looking for a ski trip with a difference – pushing yourself to the limit on the slopes, whilst at the same time raising money for a great cause – what could be better?!

The MS Trust is now taking bookings for the next Monster Ski event, which will take place back in Chamonix from 13-17 March 2015. You can register before 8 September at the earlybird rate of just £99, then after that for £150. Find out more about Monster Ski and book your place

Monster Ski group

Monster Ski 2014 group

Ben’s Five in Five fundraiser

26th August 2014 by laura.percival

Ben Naughton

On 30 August, Ben Naughton (pictured right) will be taking on his first of five events to raise money for the MS Trust. Starting with the Rubicon Half Iron Man, Ben will complete five events in just five weeks! He is also taking on the Coniston Chill Swim (5.25 miles), Marathon Row at Cross Fit HG3, London to Paris cycle ride and finishing with the Berlin Marathon on 28 September. Here Ben tells us why he is taking on these incredible challenges.

I’m fundraising for my close friend James Al-Mudallal and to raise awareness about the condition he has suddenly developed.

James was diagnosed, out of the blue, with multiple sclerosis in 2013 at the age of just 23. He was working as a journalist for Trinity Mirror group in Cardiff, writing for Western Mail, South Wales Echo and Wales on Sunday. Since the diagnosis his life has dramatically changed, being back at the family home in London, surrounded by his close friends and family who are providing him with the support that he needs on a daily basis.

I met James whilst at Newcastle University and with his infectious character, he usually leaves a lasting impression on anyone he encounters. We lived together for four years, became gym partners, played football together and cooked a few odd dodgy meals, so it’s fair to say that he has and will continue to be a huge part of my life. James is one of life’s good ones, genuinely one of the kindest and most down to earth people you could ever want to meet. This is all in aid of him and others who are living with multiple sclerosis.

These five challenges represent a short journey for me, but just the beginning for James on his road to recovery.

Find out more about Ben’s events on his Five in Five blog

Sponsor Ben on Justgiving

Thank you for making the 2014 MS Trust Secret Art Show an amazing success!

22nd August 2014 by Stephen

Thanks to all of you –artists, buyers, people who spread the word – who took part in this year’s MS Trust Secret Art Show. Now the show has closed we calculate that, with your help, we have raised over £17,000! That’s enough for us to train 10 new MS specialist nurses to help thousands of people affected by MS.

dog duck   cat

This year’s event also takes the grand total from five years of Secret Art Shows to over £100,000! It’s a tremendous achievement for a project that started off in a small gallery in York and now attracts some of the art world’s biggest names, all selling their work for a mere £45 to make a difference for people living with MS.

We’re already making plans for next year’s event. If you’re an artist who would like to get involved you can find out more here. With your help we can make the 2015 Secret Art Show the biggest and most successful yet!

Could you help us improve our website?

13th August 2014 by Nicola Pates

Since we first went online in 1997, the MS Trust website has grown into a huge, highly popular source of positive, practical and reliable information about MS. Over the last 12 months,  our website received 2.9 million page views so we must be doing something right.

But we’d like our website to be even better.

We’d like it to be a clearer, faster, simpler and more accessible resource for everyone to use. We’d like people to find the information they need as quickly as possible in a way that feels comfortable to them.

Can you help?

Over the next six months, we’d like a wide range of people to review our website. All sorts of people, including those who:

  • don’t use our site at the moment
  • don’t use it very much
  • love it but can see ways to make it even better
  • hate it and are willing to tell us why
  • feel really comfortable with the world wide web and navigating themselves to wherever they need to go
  • are wary of the web and just like to just dip in when they need some information

You might be:

  • a person with MS
  • a friend or family member
  • a work colleague
  • a health or social care professional
  • a fundraiser
  • a donor
  • a student with an interest in MS
  • or another interested user (or potential user)

What we are asking for

In the first instance, we’d like as many people as possible to complete a short survey. It should take less than five minutes and you can do it anonymously, if you like.

Later, we’ll need a smaller group of people to do follow up testing. This means trying out the new ideas for the website to see if they work for you. If you’d be up for this, you can leave your contact details at the end of the survey.

Get in touch

You can:

  • complete the survey online at www.mstrust.org.uk/websurvey
  • send for a printed copy, letting us know your name, email address and/or street address, by:
    • emailing info@mstrust.org.uk
    • calling 01462 476700
    • writing to us at MS Trust, Spirella Building, Bridge Road, Letchworth Garden City SG6 4ET

Pass this on!

Please let others know including people who don’t use our website at the moment. We’d really like a wide range of people to give us their opinions.

Thanks.

My summer at the MS Trust: learning from people with MS

12th August 2014 by Shan Teo

MS. Multiple sclerosis. A chronic neurological condition characterised by damage to the myelin sheath of nerves which leads to a variety of symptoms. May affect vision, balance, movement and many more things”.

As a medical student just finishing my second year, this was all I knew about MS before my summer holiday began.

Nick our summer intern, 2014

Nicholas Burstow, our intern

The long summer holidays of student life can be a blessing and a curse – the first few weeks may be heaven, but boredom is likely to ensue if the student has nothing to do. Fortunately my University runs a scheme which allows students to work for a charity for four weeks over the summer; the charity I chose to help was the MS Trust.

The aim of my internship was to carry out a literature search looking into the management of MS. The results I found would be used in the production of a ‘toolkit’ for any health professionals working with people with MS. Through reading more journal articles than I dare count, I learnt an awful lot more about MS than I had envisaged. But the real learning came away from the computer screen.

I was fortunate enough to be able to visit therapy centres in Letchworth and in Norwich for people living with MS. Reading about the condition and how it can affect people’s lives is one thing, but seeing it in front of your eyes is a completely different matter. I confess I found it difficult to see people struggling to walk, wheelchair bound, and in the case of one person I visited, even house bound. But through all this I found myself amazed at the resilience and positivity I saw.

As a medical student I spend a lot of my time thinking about the role of doctors in patient care, but so far I have neglected the roles of other professionals. This internship has made me realise that other allied health professionals – nurses, physios and occupational therapists to name but a few – are so important in patient care; especially for a long term condition like MS.

I have also learnt that a medical condition is much more than just pathology; it’s not solely the disease that needs treating, but the patient as well. It is easy to pick up the prescription pad and treat a symptom, but it’s just as important to think about how the disease affects everyday life. What good is treating spasticity with baclofen if the patient cannot leave their house in a wheelchair because there are no ramps?

I hope medical students appreciate that we as future doctors will not be the only ones involved in patient care. Nurses, physiotherapists, allied health professionals; we are all cogs in the same machine; one that should be driving for a better patient quality of life. And last but by certainly no means least is the patient. The patient is not just an MRI scan or a blood test result, they are a person, with worries, anxieties and hopes. The patient could be someone’s child, someone’s brother or sister, or someone’s parent, but this sadly is all too easy to forget.

Patients should realise that they are vital teachers for future doctors. We can all learn from lectures and textbooks, but you are the ones that make it all real – that tell us all the weird and wonderful side effects of a drug, or the social implications a condition can have. The doctor-patient relationship should not be a one-way street, but a road, albeit with many twists and turns, that we all travel together.

I would like to thank the MS Trust for letting me spend four weeks with them. Thank you also to Ben and Wendy, two wonderful physiotherapists, who taught me a lot about MS and make such a positive difference to people affected by the condition. Finally I would like to thank the people living with MS who spoke to me while I was on my placement. Thank you for sharing your experiences with me, helping me appreciate the huge implications any long term health condition can have on a person’s life. I hope to continue to learn from all the patients I meet during the next few years at university and beyond.

Nicholas Burstow

15 minutes with MS blogger Amelia Southard

11th August 2014 by Nicola Pates

Amelia and her husband

Amelia Southard is a writer and blogger who lives in Devon. She was diagnosed with MS in 2002. Earlier this year she took part in the MS Trust Continence Question Time, a series of short videos looking at some common MS bowel and bladder problems.

What inspired you to start blogging?

I started because I had to stop working in 2009 and my husband Martin suggested that writing a blog might help me. I thought about it and decided that I would start writing. If I could help just one person then it would be worth it, so I started Tales of Life With Multiple Sclerosis.

Has it been therapeutic?

Blogging is very therapeutic for me! It turns out that I’ve found something I didn’t realise I was good at doing! I have been complimented about my writing. People say it is very straightforward and easy for people to understand. I just write as though I was talking to someone and it seems to work! Ever since the onset of my first symptoms, I have always tried to find ways of explaining what I’m feeling to Martin. He always wants to know what I’m going through, so I always try and express what a particular symptom feels like because he can’t see it. For example, the altered sensations that I have in my feet. Sometimes my toes will be burning, like when it’s freezing cold and you’ve been outside and then you come into a warm room and your toes burn as they come back to life, – except I won’t have been outside in the cold and they don’t ever come back to life!

How does it feel to know that your article on constipation for Open Door has been one of our most popular articles over the last 10 years?

I’m blown away by it but also, in a way, it makes me feel proud because it means that I’ve potentially helped people, and that is all I wanted to do when I started writing my blog! It took me a while to decide, once I had actually written it, whether I was going to publish it. It was a very personal post about a subject that generally is not spoken about. But that was one of the reasons why I decided to go ahead and publish it. We need to be able to talk about these issues. Everyone is made the same and everyone has these issues so why should we be embarrassed about it? The fact that so many people have read it says quite a lot too, doesn’t it?

You love the theatre. How accessible do you find venues?

Singing and musical theatre was what I trained to do and is probably one of the things I find the saddest about getting MS, that I am no longer able to perform in shows. But having said that, we have been able to do some fundraising concerts raising over £6,000 for local MS charities, which is quite satisfying! On the whole theatre venues are reasonably well equipped to deal with people with disabilities. They’ve had to adapt to all the new disability laws. The problem in London with theatres is that they are all quite old, so adapting them hasn’t been an easy thing to do. But they all do what they can!

What advice would you give someone who’s just been diagnosed?

Firstly just breathe. Your life isn’t over, it just may not be going in the direction that you thought it might. I would also say that MS is a complicated condition. There are many different symptoms but that doesn’t mean that you will end up with all of them. It not a forgone conclusion that you will end up in a wheelchair. I’ve always said that you could have a room full of people who have MS but our experience of the condition, although it may be similar, won’t be identical.

This article is from our free quarterly newsletter, Open Door. Sign up to receive your copy by post or email, or read the latest edition in full.

Having a baby

11th August 2014 by Nicola Pates

In the May issue of Open Door we covered pregnancy and MS. In this issue we look at some of the questions mums with MS ask about childbirth and caring for a newborn baby.

Mum with her baby

What can I do to prepare for the birth?

Antenatal classes provided by the NHS or other organisations such as the National Childbirth Trust are a great way to learn more about the options available during labour and delivery. They are also an ideal opportunity to meet other expectant mums and find out about local health services and support such as mother and baby groups.

Many women choose to make a birth plan which records where you would like to give birth, who you would like to have with you, preferences for pain relief and how you feel about interventions such as forceps delivery.

If you have MS this can be even more important. Not all the health professionals that might see you during labour will be familiar with MS, so it will help if your birth plan documents that certain procedures, such as epidural anaesthesia, are safe for mums with MS. If at all possible, request a meeting with your whole team including midwife, MS nurse and anaesthetist to draw up your birth plan and don’t be afraid to ask for what you want!

You can find more info about preparing a birth plan on NHS Choices.

Will MS affect my labour or delivery?

MS does not usually affect labour or delivery. The frequency of complications during labour in women with MS does not generally differ from that of women without MS.
Birthing positions, techniques for coping with fatigue or spasticity during labour can be discussed with a midwife in advance and recorded in your birth plan. Some women with MS have recommended a water birth, for both the extra support and the cooling that the water provides.

At delivery, safety of mother and child is paramount and there may be medical reasons for an assisted delivery – eg a forceps or vacuum delivery – or delivery by caesarean section. A caesarean delivery may be recommended if your MS symptoms would affect your ability to push effectively during labour, but should not be advised solely on the grounds of MS, as recovery afterwards takes longer than from a vaginal birth.

What pain relief is available?

Women with MS can generally use most types of pain relief during labour, such as pethidine, entonox (gas and air) and epidural anaesthesia. No adverse effects on delivery or course of MS have been associated with epidural anaesthesia.

TENS machines can be helpful with pain relief in the early stages of labour. However, some women with MS have reported that TENS machines can trigger leg spasm during labour, so it might be worth discussing this with your MS team and midwife in advance.

What can my birth partner do to help?

The most important thing that your birth partner can do is just be with you, providing emotional and physical support. If they’ve accompanied you to antenatal classes and have helped you draw up your birth plan, they’ll have a good idea of what you would prefer. They can help pass the time during the early stages, help you change positions, massage your back and shoulders, comfort and reassure you as labour progresses, help you with relaxation and breathing techniques, support your decisions such as the pain relief you have chosen, and help explain what you want to the midwife or doctor and help you understand what the midwife or doctor need you to do.

Life with your new baby

Will I be able to manage?

Coping with a new baby can be demanding for any new mum, so make the most of offers of help. If possible, try discussing in advance the type of help that you would most welcome. This could be help with housework, restocking the fridge/freezer, night feeding, looking after the baby for a while to allow you to catch up on sleep or just having a bit of time to yourself. If you can’t get help from friends and relatives, it might be possible to have help arranged through social services or your health visitor.

It’s easy to feel isolated when caring for a small baby, so it’s worth making time to get out and meet other new mums in a similar situation. Your midwife and health visitor will know of mother and baby groups in your area and organisations such as the National Childbirth Trust run local groups. Chatting to other parents at baby clinics can help you cope with the ups and downs.

My health visitor recommended some mums groups. I wasn’t sure at first but I’ve made some great friends.

Will I have a relapse?

There is an increased risk of having a relapse during the first three months after your baby is born, so it’s worth making contingency plans with family and friends, just in case. However, one of the larger studies which monitored relapses before, during and after pregnancy reported that, despite the increased risk for the first three months, two-thirds of the mums did not experience a relapse during this period. Women whose MS had been more active in the year before pregnancy, and those who had a relapse during pregnancy, were more likely to experience a relapse after having a baby.

Can I breastfeed?

MS cannot be passed on through breast milk and research has shown that breastfeeding is best for the health of the newborn baby. However, how you feed your baby is a person choice. Some new mums with MS will have understandable concerns about fatigue and may prefer to bottle feed, since this can be shared with others. On the other hand, once established, breastfeeding is quicker and more convenient than bottle feeding. You have to weigh up the pros and cons for your own situation.

My MS nurse was great at helping me work out a feeding routine that worked for me.

Can I take medicines after the birth?

Disease modifying treatments can be present in breast milk. Since the effects of these drugs on the baby are unknown, mums are advised to delay starting treatment while breastfeeding or to stop breastfeeding in order to start treatment. The decision will be influenced by your previous history of relapses.

Steroids can also be present in breast milk and there has been very little research into the potential effects on the baby of the high doses used to treat MS relapses. You can express as much milk as possible before starting the course of steroids and store this for use while taking steroids. You can express and discard milk during your treatment period (usually 3–5 days) and resume breastfeeding 1–2 days after the end of treatment. Your MS nurse and neurologist will agree timings with you.

Other drugs taken to treat MS symptoms such as nerve pain or spasticity may not be recommended during breastfeeding but there may be safer alternatives. Talk to your MS team, midwife or GP for advice.

Further reading

This article is from our free quarterly newsletter, Open Door. Sign up to receive your copy by post or email, or read the latest edition in full.

Two in a million

11th August 2014 by Nicola Pates

Two people holding hands

Graham and Nicki Law got married in 1997. Since then they’ve discovered that they are one of only a handful of couples in the UK where both partners have MS. Here they share their story and explain how they’ve found that mindfulness can help them deal with their symptoms and support each other.

Graham’s story

In 2000 Nicki went to her GP with a numb leg. The GP immediately said it could be an early symptom of multiple sclerosis, MS. I found the news devastating, worrying, terrifying. What would happen to Nicki, to our children, to us? Still reeling from this news, a year later I began feeling some weird sensations in my legs and arms. I had weakness, balance problems, pain and numbness. Pull yourself together, I thought, you’re just copying Nicki. Nobody likes a hypochondriac. This is not how you were brought up.

But I realised that the temporary blindness, difficulties swallowing, the weird tingling in my hands when I looked down, all added up to the same thing. After seeing a neurologist I was diagnosed with MS also.

I felt angry. Why was this happening? I didn’t want to hear about the disease, about the future. I wanted to do the bloke’s thing and pretend it wasn’t happening.

Nicki’s story

I’m a GP – it’s a job I love. As a member of the medical world, you’d think I could deal with learning about my diagnosis of MS. But, as a person in this profession, I felt that I was not allowed to be ill. The irony that illness is frowned upon by other doctors and by managers. There’s a feeling that you’re letting the team down.

During the difficult early times I began to explore yoga. I have not looked back since then. Graham, ever the sceptic, couldn’t see how “an hour’s lying down” could provide any benefit. He keeps telling me that he is a born sceptic. His turning point was when he spent two weeks exploring his mood, his mind and his leadership style on another work course. He came back a different person. He had spent time exploring mindfulness and yoga, which meant he had to eat his words when he came home.

Our story

So, here we are: we both have MS. In some ways it’s helpful both having the same disease. We understand each other. We can be sympathetic about new symptoms and share the experiences we have which others wouldn’t understand. We both experience a squeeze around the ankles, the ‘MS hug’. We both have bouts of fatigue. People who have not suffered from this thinks that it means tiredness, that a good night’s sleep will sort it all out. Fatigue is not this, it is a complete exhaustion.

We both recognised that responding badly to stressful events made us unwell and knew we had to look at ways to avoid this. For both of us, yoga and mindfulness have opened a whole world of calm. We’ve developed an understanding of our bodies and minds. We’ve learned breathing techniques help to calm the body, allow the body to renew. This helps us to feel more ready to deal with the next thing, the next event in life.

The anger that Graham used to suffer from, leading to denial, is a thing of the past. We are both much more aware of our bodies and minds and recognise times we need to slow down, take time out.

There are still hurdles ahead. But we feel very lucky to be together to face whatever comes our way.

Read Graham’s top tips for being more mindful.

This article is from our free quarterly newsletter, Open Door. Sign up to receive your copy by post or email, or read the latest edition in full.

“Being mindful allows you to focus your attention on the present…”

11th August 2014 by Nicola Pates

Everyone has good days and bad days but no mood lasts for ever. In Graham’s book, Feel Good, he looks at techniques for improving your mood and coping with whatever comes your way.

a woman practising mindfulness with a hot drink

Focus on what you can do, not what you can’t

This will help you to improve positive feelings and raise your self-esteem by reminding you that, even if you can’t do everything you used to do, there are still lots of things you can achieve and feel good about. I know from my own experience that when you get a diagnosis of MS, your self-acceptance takes a blow. This exercise can give you a good way of coping.

Every evening for the next week, write down something that you have done well or completed to the level you hoped. This could be anything: something simple such as cooking a nice meal or tidying a cupboard that has long needed some attention. Write “I have had a success today because…” and complete the sentence.

Focus on your goals

MS doesn’t have to mean giving up on your goals, just changing the ways you might achieve them. Research has shown if you have a strong purpose in life you’re more likely to deal with stress better.

What are your goals? Make a note of them on a post-it note. How are you going to achieve them?

Practice relaxation and mindfulness

Mindfulness is about being aware of how your body feels, your emotions and the sounds and sights around you, as they are happening. Being mindful allows you to focus your attention in the present. It helps you to stop thinking back to the past and how things could have been different and worry less about what might happen in the future. There are many popular books and apps that will help you to pursue this.

Spend five minutes each day practising mindfulness: sit or lie comfortably, close your eyes and focus on your breathing. Notice how it feels. You may hear sounds around you. Observe these without thinking about what they are, or where they originate. You may recognise feelings in your body, in your legs, arms, back, or any part of your body. You will find that thoughts drift into your mind. Notice them, but don’t interact with them. Allow them to drift and watch them as they float away. This requires practice but you will feel the benefits as you learn to rest your mind.

MS and mindfulness

    Feel Good front cover

  • Graham’s book, Feel Good: How to manage your mood and deal with whatever comes your way, is published by Capstone, a Wiley brand.
  • Everydaymindfulness.org.uk is an online community about mindfulness that was founded by Gareth Walker who has MS.
  • BeMindful.org.uk is a website run by the Mental Health Foundation to raise awareness of the benefits of mindfulness-based therapies as a treatment to improve mental and physical health.
  • The MS Trust’s Move it For MS DVD includes a series of relaxation exercises ideal for people with MS.
  • Find out more about mindfulness.
This article is from our free quarterly newsletter, Open Door. Sign up to receive your copy by post or email, or read the latest edition in full.

Steve Woodward on going to gigs

11th August 2014 by Shan Teo

Do your research, ask questions and don’t be afraid”

picture of Steve Woodward

There really isn’t anything better than live performance. Many of us are in our 20s-30s when we get our diagnosis, and, speaking personally, I was right in the sweet spot of my musical fanaticism.

I’m 40 now and I was diagnosed with MS around 10 years ago. I’ve continued to attend gigs, and occasionally play in them too. Like many things which people with any form of disability do, they invariably require a certain level of planning. I’m also more selective about the gigs I go to, but I think that’s mostly to do with having a three-yearold daughter rather than a decrease in mobility.

Full disclosure: my level of disability is still fairly minimal, although I use a stick as a walking aid, and I haven’t – so far – had any issues with venues being impossible to access. Also the sorts of venues I tend to visit are fairly small (and not a little scuzzy). I’ve only ever gone down the front at a couple of select gigs where I knew there was minimal opportunity for a mosh pit.

The only BIG venue I ever went to – the O2 – had a terrible sound, so I’m in no hurry to repeat a stadium gig in the future. It also involved a lot of walking (although there was a guaranteed sit-down at the end).

Plan ahead

Boringly, I’ve been lucky and haven’t got any horror stories about gigs. But that’s not to say I don’t do an inordinate amount of pre-event planning.

First up I make sure I know exactly where I’m going, especially if it’s a new venue. If I’ve never been there before, I’ll get in touch to find about parking, access and to spell out my requirements.

Sometimes (The Rainbow in Birmingham – a tiny place I visited last year) I’ll get a really helpful response which makes finding a parking space easy and makes me feel really comfortable.

Sometimes(Rescue Rooms in Nottingham a couple of weeks ago), I’ll get NOTHING at all, even when I get in touch (email, Facebook, Twitter, website) months in advance. To be fair, I’ve been there many times before, so I know it’s always over-capacity and insanely hot. Also, I knew all about parking and toilets (and the need to keep my fluids up) and such like. But still – what if I hadn’t known about it? Not very impressive.

If you do your planning, and communicate with the venue about your requirements, there’s really no excuse to stop going to gigs. I use my Disabled Parking badge when required, and try to avoid driving myself. I have a friend who is the same age and has two kids who is always up for a musical experience (cheers, Mike!). On this point, I try not to drink too much. Not only will it wind up the kind soul who has driven me, but alcohol is an irritant, bladder-wise – so the frequent trips to the loos will ruin my enjoyment.

I works in an arts venue which also coordinates festivals and outdoor performances, so I’m in a unique position in that I can look at an event and think about how it will affect me, and then implement ways which could minimise problems. However, with modern technology, people with MS really have no excuses – do your research in advance, ask questions and don’t be afraid. And wear earplugs.

Attitude is Everything is an organisation dedicated to improving deaf and disabled people’s access to live music. In return for free tickets and travel, their team of ‘mystery shoppers’ report back on the accessibility and overall experience at UK music venues, clubs and festivals, and identify strengths and areas for improvement. To find out more and get involved visit attitudeiseverything.org.uk

This article is from our free quarterly newsletter, Open Door. Sign up to receive your copy by post or email, or read the latest edition in full.