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Running the Greater Manchester Marathon for Emma

23rd March 2015 by laura.percival

Teressa Longhurst

Teressa Longhurst (pictured right) will be running the ASICS Greater Manchester Marathon on 19 April in memory of her friend Emma Farley who had multiple sclerosis. Here she tells us why she is taking on this challenge and raising money for the MS Trust.

As a general rule I do these events for a bit of fun but having recently lost a very caring friend Emma, I wanted to run the marathon in her memory and raise money to help other people who have this awful disease. It’s been a few years since I last ran a whole marathon (2010 to be exact) and I am very nervous about running this one.

It’s been a physical struggle as I’ve had a few injuries that have set me back and I no longer run the kind of distances I used to run. However I am looking forward to race day even though I am feeling unprepared, but knowing that I am doing it for Emma will help get me around.

Emma was a very kind person who always tried to help people, even when she was poorly herself. She was much loved and taken from her family far too soon. Emma and I shared a love of animals, which is one of the reasons why supporting the MS Trust was important to me. They do so much good work and do not support or fund animal testing.

The MS Trust vision is to make a real difference for people with MS through the provision of information and professional education, by funding practical research and by campaigning for the improvement of MS services. They work to the highest possible standards and actively seek opportunities to work with other organisations to provide real benefit for people with MS.

It will be a great honour to be able to complete the marathon for Emma and other people who have multiple sclerosis.

Visit Teressa’s online fundraising page

Monster Ski in Chamonix: a truly humbling experience

20th March 2015 by laura.percival

Snowboarder Ben Rogers and his friend Phil Draper signed up for our 2015 Monster Ski challenge because they believe that ‘life’s a game to be played, life’s a challenge to be met and life’s an opportunity to be captured’. Here Ben shares his experience of snowboarding 90,000 vertical feet in Chamonix to raise funds to support people living with MS.

Monster Ski group

Months of excitement and anticipation had brought us to this moment. It was Friday morning at Heathrow airport and we were all meeting for the first time ready for the Monster Ski Challenge. Before we knew it we were checked in and heading towards our destination, Geneva airport.

We arrived in Geneva greeted by glorious sunshine and ready for our expedition. Drew, the driver of our airport transfer van, took us through picture perfect scenery in the French valley and then the imposing snow topped mountains appeared.

We reached Chamonix at 2pm and had plenty of down time to unwind and get to know the area. The views were amazing, however the -20 wind chill was a stark shock from the mild temperatures in the valley!

In the evening we were briefed on the challenge ahead. We all met at 6pm for welcome drinks at the hotel bar, introduced ourselves to each other, then listened to the briefing from the ESF instructors. Afterwards, we enjoyed an evening meal and had an early night ready for the challenge the next day.

The Monster Ski challenge begins in Les Houches

Day one of the challenge had arrived and a big breakfast was in order to fuel us up ready for the day ahead! At 8:40am we met at the bus stop and made our way to Les Houches. The instructors took us straight up the Télécabine du Prarion, where we got our ski legs and were split into two groups.

Tom Humpage, a professional photographer, also joined us for the morning. However, he had such a great time he stayed with us for the whole day! He took some great photos of the group, he’s a really talented photographer and snowboarder!

Monster Ski selfie

We made ten full descents of the mountain to reach our 30,000ft target for the day, mainly skiing the black Kandahar piste – a fast tree lined run through the forest at the base of Mont Blanc. The day started with firm pistes until the afternoon when conditions had become slushy making the descent much more of a challenge!

We stopped for lunch after eight descents at a picturesque restaurant with stunning views of the mountains, including the glorious imposing Mont Blanc. We met with the other Monster Skiers for a quick pit stop, refuelling for the final two descents of the day, and completed the day’s challenge at around 4pm.

Day two and another 30,000 vertical feet

Day two started again at 8:40am at the bus stop and we decided to return to Les Houches. It was another nice day, but a bit cooler and cloudier giving us much better ski conditions than the previous morning. We made the most of the conditions and rode hard in the morning to try and beat the afternoon slush!

After lunch we made our way to the other side of the mountain, St Gervais before heading back to Les Houches for the final descent of the day which was very slushy, but was also great fun jumping over the mounds of snow that had accumulated.

Heading to Les Grands Montets for the final day

The final day of the challenge arrived. We met at the bus stop and decided to head to the notorious Les Grands Montets to make our final 30,000ft decent. It was very windy and overcast in Chamonix and we were quite apprehensive as to what the conditions would be like up the mountain. The ski bus was extremely crowded and it seemed like quite a long journey heading up the windy roads!

We arrived and took the Plan Joran and Bochard gondolas up to just under 3,000 metres where it was lightly snowing and pretty windy too. Visibility reduced throughout the day and the snowfall become heavier until we reached the mid station where it brightened up a little.

In a chair lift

We made six descents to reach the 30,000ft target, five before lunch and one in the afternoon. After having our final lunch together on the mountain we made our final run to complete our three day challenge. We regrouped at the bottom of the Grands Montets and thanked the instructors, Beatrice and Manu for their excellent guidance.

The Monster Ski awards!

In the evening we met at Bar’d Up for a presentation by Russell Hardy, Monster Skier and former Chair of Trustees at the MS Trust, where we were all given an award.

The ‘Burning the wick at both ends’ award was handed to Matt as he was able to stay out all night and ski hard all day. Robbie won the ‘King of speed’ award for reaching a top speed of over 68mph. ‘Mr Calm’ award went to Max for his calm approach despite not having skied for a number of years.

‘Father figure of the trip’ went to David, who could always be relied on for his level headed decisions. ‘Funny guy award’ was given to Neil – he had a great sense of humour and kept everyone smiling. ‘King of the mountain’ went to Mark who was never phased and skied hard all day long!

The ‘Beer monster’ award went to Joff, who also carried round a handy hip flask always full of marmalade vodka. ‘Mother of the slope’ went to Emma who was always looking out for everyone and making sure everyone was OK. The ‘Queen of organisation’ award went to Vicky from Ski Independence – without her planning the trip would not have gone as smoothly as it did.

The ‘Loudest snorer’ award went to Les – as a result of his snoring we ended up with a lodger in our room (Sorry Les!). The ‘Cool guy’ award went to Phil – no matter how hard the going got he was always smiling at the bottom of the slope. The ‘Inspirational person of the trip’ went to Ben H, for shredding hard and completing the challenge, showing great determination to not let MS hold him back (legend!).

Monster Skiers having dinner

‘My hotel is better than yours’ award went to Mark G who had booked his own accommodation – we realised he did have a point though when he showed us how good his hotel’s menu was! The ‘Technology’ award went to me, probably because I constantly had a GoPro camera stuck to my head! Recognition also goes out to Russell who is a great ambassador for the MS Trust (and a great skier!)

We then went to La Boccalette for our final evening meal together and congratulated each other before a few final well eared beers in the bar to complete our trip!

A truly humbling experience

For me the whole experience of fundraising, learning about MS and meeting people who suffer in various ways has been a truly humbling experience and will stay with me for the rest of my life.

Thank you to everyone who helped organise this amazing event and congratulations to everyone who participated for your fantastic achievements.

Here is a link to a short video of our trip and to those of you who are thinking of taking on the Monster Ski challenge in the future, DO IT!

Until next time…

Visit Ben and Phil’s online fundraising page

Find out more about the MS Trust’s Monster Ski challenge

Helping MS specialist nurses deliver an even better service for people affected by MS

19th March 2015 by Stephen

As well as running a range of education and development events for MS specialists, and holding the UK’s largest conference for MS health professionals, the MS Trust also organises an annual meeting for the country’s MS specialist nurses every March. These meetings give MS specialist nurses the opportunity to learn new skills, share their experience and hear about the latest clinical updates. All of this enables them to deliver an even better, more informed, service for people living with MS.

MS nurses at an MS Trust education eventThis year’s meeting was held in Crewe from 9-11 March and attracted 110 MS specialist nurses – that’s almost half the UK’s workforce. They heard about a range of issues including:

  • the latest evidence for whether people diagnosed with MS should be treated early with disease modifying drugs (look out for a special feature on this in the August issue of Open Door)
  • the advantages of (and opportunities for) specialist nurse-led MS services, especially in the light of the planned integration of health and social care
  • the need for MS specialists involved in rehabilitation to generate evidence for the difference their work makes, so that they can help more people living with MS

The meeting also featured a number of practical workshops focused on issues including helping people with MS stay in work, helping people with MS choose the right disease modifying drug for them, helping people who want to change the treatment they are taking, and talking about difficult issues around MS.

We’ve just started going through the evaluation forms now and we can already see that the nurse meeting was hugely appreciated by the MS specialist nurses who attended. One nurse commented: “I came wanting more knowledge on disease modifying treatments, MS progression and the latest research data. I received all this and more!”. Another commented: “I go away from this event with increased enthusiasm and long to-do list!”

It’s thanks to the support of people like you that we are able to continue to offer development and training opportunities for MS specialists, and help them make even more of a difference to people affected by MS. If you’d like to support our campaign to put MS specialists at the heart of MS care join us and help us spread the word!

The new NICE Guidelines for the management of multiple sclerosis in primary and secondary care: will they improve the care of people with MS?

17th March 2015 by Guest blogger

Introduction

After reading our recent review of the revised NICE Clinical Guideline (CG186) in the January issue of Way Ahead, our periodical for health professionals with an interest in MS, Paul Bull, a retired university academic, former chairman of the Colchester Branch of the MS Society and person with MS, was inspired to share his thoughts.

An opportunity for the MS community to help improve the care of people with MS?

At last, five years late, the National Institute for Health and Care Excellence (NICE) published their revised Guideline for the Management of multiple sclerosis in primary and secondary care1 in October 2014, which in essence presents an outline of the care a person with MS should expect to be able to receive from the UK National Health Service. Unfortunately, this document has not met with unanimous approval. While being praised for recommending the application of multidisciplinary teams, a named single point of contact and annual reviews by an MS expert for the treatment of MS, they have been criticised for undervaluing the role of MS specialist nurses, not bringing together all elements of MS care into a single document of best practice and for not recommending the drugs Fampridine and Sativex for the relief of immobility and spasticity respectively2. But, will these new guidelines be of any use? Will they help lead to improvement in the care of people with MS in the UK, such that they reach the acceptable standards set out in the NICE document? There are certainly some powerful reasons to be pessimistic as I will make clear. However, this Guideline also presents the MS community with an opportunity that should not be missed, an opportunity to mobilise into helping to improve the care of the people with MS.

Under resourced, lack of compliance and not legally binding

There are three main reasons to be pessimistic. First, in the UK neurology is a relatively under-resourced specialism with less than a third of the number of neurologists per head of population compared to the European average3 and at a time when demand for its services is increasing due to an ageing population, potential budgetary cutbacks and the continuing impact of a major internal reorganisation of the health service. Under such conditions, is it possible that services for MS will be able to compete successfully with calls for support from much larger disease groups, such as Alzheimer’s disease with seven times as many cases, and stroke and epilepsy each with almost three times as many people affected4.

Second, the experience of compliance with previous standards of care has been disappointing. For example, an audit of the 2003 Guideline5 by the Royal College of Physicians and the MS Trust6 via a self-selected survey on the MS Trust website indicated that for a large number of people with MS in the UK, the majority of the NICE Guideline for their care had not been implemented five years after its publication. Similar desultory results were discovered around the implementation of the 11 Quality Requirements of the National Service Framework (NSF) for Long-term Conditions7 published by the Department of Health that were supposed to put the individual at the heart of care. In a review of the progress of the implementation of the NSF, Thomas et al8 found that in the Primary Care Trusts investigated, not one had fully met a single NSF quality requirement. Indeed, in a recent review of services for people with neurological conditions9, the National Audit Office highlighted that no major improvements had taken place in their care since 2006. With such a pedigree of failure, what hope is there for this new Guideline in the improvement of care?

Third, it must be remembered that this guidance from NICE is not legally binding. Health professionals are expected to take the Guideline fully into account when exercising their clinical judgement, and it is the responsibility of local commissioners to implement the guidance. However, there are no sanctions if they do not. Furthermore, it must be very easy for the Guideline to be overlooked, given all the other competing demands on health professionals’ time and the many competing demands for health care funding. As a result, I suspect this NICE Guideline will not automatically come into effect through some magical administrative osmosis. If they are deemed worthwhile they must from now on be championed by the MS community. My hope is that this will be carried out at the strategic level of the four national health authorities by their respective MS organisations. But, what about at the local level, say at the scale of the MS Society Branch where important resource-allocation decisions are also being made that directly affect the care people with MS receive? Branch committee members are probably ideally placed to know what is going on in their ‘patch’. However, for them to get involved in lobbying for improvements in the health care of the people with MS in their area they need help in at least two important areas. First, they need a simple tool to be developed that will indicate the degree of local compliance with the new NICE guidance; a device that will provide objective evidence on the standard of care available to people with MS. This could, for example, be in the form of a list of tick-box questions. Second, they need advice on how best to lobby for their improvement in the new NHS. It is in these last two areas of support that I believe the MS charity sector has been weak in the past. Let it not happen again, so we stand a chance of making things better for people with MS.

Paul Bull, February 2015.

References:
1. National Institute for Health and Care Excellence. Multiple sclerosis: management of multiple sclerosis in primary and secondary care. NICE clinical guideline 186. London: NICE; 2014.
2. MS Trust. Management of MS in primary and secondary care – NICE Clinical Guideline 186: an analysis of how it measures up. Way Ahead 2015; 19(1):11-15.
3. Lancet Neurology Editorial. UK neurological care: time to confront the crisis. Lancet Neurology 2011; 10(8): 671.
4. Neurological Alliance. Neuro Numbers: a brief overview of the numbers of people in the UK with a neurological condition. London: Neurological Alliance; 2003.
5. National Institute for Health and Clinical Excellence. Multiple sclerosis: management of multiple sclerosis in primary and secondary care. NICE clinical guideline 8. London: NICE; 2003.
6. Royal College of Physicians, MS Trust. National audit of services for people with MS 2008: summary report. London RCP; 2008.
7. Department of Health. The National Service Framework for Long-term Conditions. London: DH; 2005.
8. Thomas S, Davies A, Peel C. A mid-term review of the NSF for long-term neurological conditions. British Journal of Neuroscience Nursing 2010; 6(8): 366-70.
9. National Audit Office. Department of Health: services for people with neurological conditions. London: The Stationary Office; 2011.

Ten years with MS and running 500km

15th March 2015 by laura.percival

Debbie and Joe Worthington

Debbie Worthington tells us how taking on a challenge to run 500km this year with her husband in aid of the MS Trust has helped her come to terms with her own MS diagnosis.

This year my husband Joe and I have set ourselves the challenge to run 500k in timed runs and raise £10,000 for the Multiple Sclerosis Trust. Looking back, I’m not sure how it’s all come about, but I think I’ll blame the ladies in the MS Trust tent at the Great North Run last year!

So why running, the MS Trust and a £10,000 target? This year it’ll be ten years since I was diagnosed with multiple sclerosis. Although I know I’ve been really lucky, I also know that it’s only in the last 6 months since deciding to take on the challenge that I’ve really come to terms with that diagnosis and felt confident enough to “go public”.

I started following a diet that minimises the amount of saturated fat I eat a couple of years ago and saw the benefits almost immediately. Having more energy was one, so I thought I’d try out Joe’s hobby after getting a bit fed up of being a spectator! I went for my first (very slow and very short) run a year ago and ran my first 10km after four months of training.

I’ve really been bitten by the running bug and ten years on from my diagnosis I decided that it was time for us to set ourselves a challenge and say thank you for the support I’ve received. The MS Trust is a great charity that makes a difference to so many people’s lives. I credit the unbiased information provided by the MS Trust, and the training for the specialist nurses that keep an eye on me, as the reason I can take on this challenge!

Now I’m getting ready to run over 150k in organised events, working up to my first half marathon – The Great North Run in September. Joe has been running a lot longer than me and so it is only fair that he runs further! He will be running over 350k, including three marathons and the Yorkshire 3 Peaks.

We’ve already got 35k under our belts from our regular Saturday morning parkruns. In March we’ll be running the Lincoln 10k and will be doing races in England, Scotland and Wales over the coming months. The highlight of the year will be in July when 20 of our friends and family join us to simultaneously run the Leeds 10k and British 10k in London on my birthday!

We’d love you to follow our journey on Facebook or on our Worthington 500k Challenge website. You can also sponsor us on our fundraising page.

Do your medicines move with you when you go into or out of hospital?

13th March 2015 by Shan Teo

Alice Hamilton, the MS Trust’s Policy Officer, looks at a new guidance from NICE

NICE (National Institute for Health and Care Excellence) has published new guidance* about what hospitals and other health professionals should be doing to ensure that medicines are used to best effect – what the jargon calls ‘Medicines Optimisation’. This type of NICE Guidance is seeking to standardise practice so that all the information goes with an individual every time. It’s not the most exciting topic in the world but it can really matter, as anyone can testify who has had a bad reaction, or whose medicines interact, or who has been discharged from hospital without all their medicines.

NICE’s prime concern is that medicines and all the information about them go with the individual when they are admitted to or discharged from hospital, especially if someone is discharged to a care home rather than their own home. In this instance, the new guidance states the obvious, such as that information about medicines should contain information about the patient and their GP, a full list of medicines, dosages, times taken, when medications need to be reviewed.

But there are some more positive points for people with MS. One recommendation covers the Medications Review, which is a ‘how-to’ guide. Medications reviews look at all the prescribed, over the counter and off the shelf medicines (including supplements) someone might be taking, to ensure that medicines are not counteracting each other. Some off the shelf medicines and supplements are known either to counteract some prescription medicines or to reduce their effectiveness. Another important element of a medications review is to identify whether any of these drugs or some combination is likely to provoke a bad reaction. And then it’s always worth checking whether someone actually needs all these medications? How many people want to take more than is strictly accurate.

The other key recommendation is a medicines self-management plan for everyone with a long term condition. These are structured, documented plans which will include what medicines you might be taking, how, and when; also possible allergies to any drugs and who to contact if things go wrong. This can only be a good thing for people with MS.

*NICE guidance only applies in England.

What are the challenges facing MS specialist services today?

12th March 2015 by Stephen

When the MS Trust was founded in 1993, there were no MS specialist nurses. Today we have over 200, plus many therapists with special expertise in MS. So why are we campaigning to put more MS specialists at the heart of MS care?

MS nurse with patient and heart of MS care logoWe know that MS specialists are valued by people with MS. Only they have the understanding and expertise to help people across their range of symptoms, through their possible treatment and therapy options, throughout their lives with MS. However, we know that not everyone who needs specialist care can currently access it.

One year ago we surveyed the UK’s MS specialist nurses. We wanted to find out how many MS nurses there really are in the UK and whether we have enough of them to deliver the best possible care for people living with MS. We also wanted to find out what challenges they faced.

We discovered that we currently don’t have enough MS specialist nurses to care for the 100,000 people living with MS in the UK today. There are significant shortfalls in both England and Scotland. Overall, we calculate we need another 62 MS specialist nurses.

What’s more, many MS specialist nurses are severely overstretched. We estimate that, to be sustainable, a specialist nurse should, on average, care for no more than 358 people with MS. From our survey we discovered that almost 30,000 people with MS in the UK live in areas where the MS specialist nurses have to manage caseloads of over 700!

The nurses told us they face a number of challenges. Tighter budgets in the NHS have put pressure on many specialist nurse positions. Posts that become vacant, because of retirement or maternity leave, aren’t always filled. Some specialist nurses reported being asked to combine their specialist role with ward work. Many specialist nurses also told us that they had seen restrictions placed on the time available for training.

The challenges aren’t restricted to specialist nurses. In 2013 we published a report on MS allied health professionals – that is physiotherapists, occupational therapists, and other therapists with special expertise in MS. As with specialist nurses, we found that access to these services is uneven across the UK. Many people with MS have to travel long distances to access particular treatments such as Functional Electrical Stimulation (FES), which a physiotherapist can use to help with MS foot drop. Where there are MS specialist therapists, many have found their caseloads increase drastically.

These MS specialists face the additional challenge of making their services “visible” to NHS commissioners and managers, who aren’t always are of the benefits of physiotherapists or speech and language therapists, for example, to people living with MS.

These are some of the problems we’re addressing in our campaign. Over the past two years we’ve been working with MS specialist teams across the UK to help them generate evidence for the value of their services, so they can make the best possible case in defending and promoting them. We’ve recently completed the data collection and we’ll be publishing a final report later in 2015. We hope this will send a clear message to commissioners and managers that everyone affected by MS should be able to access good quality, specialist services near them.

We can only continue this work with your support. If you value MS specialist services, add your voice to our campaign and help us spread the word. Together we can make sure that everyone affected by MS can get the best possible care.

Recognising, accepting and adapting – how I manage my journey on Strictly

11th March 2015 by helena.jidborg

MS awareness campaigner, Trishna Bharadia, who is featuring in the new BBC series People’s Strictly for Comic Relief, tells us about what it is like taking part of a big production like this when you have MS.

cropped picture for blog

When I discovered that I’d been chosen to dance in the first ever People’s Strictly for Comic Relief I was first shocked and then ecstatic, as you can probably tell from my reaction at the “Zumba surprise” that was laid on by the BBC. Since that first programme was aired, I’ve had a huge amount of support from everyone, particularly from those within the MS community who have told me they’re delighted that “one of us” has been given the chance to raise awareness on such a large and positive platform.

It is very demanding though, especially dancing a jive, so how have I coped?

Being on the show has been the most amazing thing I’ve ever experienced. When you’re having this much fun, sometimes you just push through, even when you feel like you’re going to fall over from exhaustion! There’s a lot to be said for staying positive and happy, and even on days when we’ve been filming for hours on end and it gets to the evening and I’m almost incoherent because my fatigue has set in, the smile has never left my face!

Trishna dancing

It’s been a learning curve for the production crew too. Many of them had never worked with someone with MS before and they quickly started to gauge what my limits were. They made sure they scheduled in adequate rest breaks and tried not to give me too many long filming days in a row. It was frustrating because sometimes I felt like I was missing out on socialising with the others because I had to take a nap or lie down, but I needed to do this to make sure I could give my 100%.

People are probably bored of hearing me going on about just how amazing my dance partner Aljaz Skornajec is! But he really has made so much effort to learn about MS and my unique symptoms. In fact he’s had first hand experience of the unpredictability of the condition; mid-way through the process I had the unfortunate realisation that I may have relapsed for the first time in a few years. Losing the feeling in part of your foot and not knowing how far it will spread is very scary when you’re about to dance in front of the nation! But he’s been incredibly understanding and perceptive, knowing when to take rest breaks and making the most of our weekend sessions when I’m at my most alert because I’ve not had to do a full day of work before we’ve even started!

Finally, no two people with MS are the same and no two days are the same. I’ve emphasised that constantly throughout this journey. It’s all about recognising, accepting and adapting. That’s why I’ve been able to enjoy every single moment of this journey and the smile has never left my face!

The People’s Strictly final airs on Wed. 11th March 2015 on BBC1 at 9pm. Tune in from the start if you don’t want to miss Trishna and Aljaz’s jive!

Voting opens for just a short time after all the couples have danced and the money raised from calls will go to Comic Relief.

How do you raise awareness of multiple sclerosis, when MS varies so much from person to person?

6th March 2015 by helena.jidborg

Helena Jidborg Alexander who works in our MS Trust Web team and is a person with MS ponders the question of raising awareness of MS

Two nights ago I was watching People’s Strictly featuring dancer and MS Campaigner Trishna. I decided that I wanted to do some live tweeting from the MS Trust Twitter account as I saw this as a good opportunity to raise awareness of multiple sclerosis. As a person with MS myself, I was very excited about the idea of “one of us” being on such a widely watched show. Surely this would be a great way of making the general public more aware of a condition like MS!

Trishna herself is an avid MS awareness raiser and has taken part in several videos that we at the MS Trust have made about MS in the past , I think she is a great spokesperson. But I realised as I was tweeting that there were some people that felt that this wasn’t raising awareness of MS, or at least not their MS. “How can I even contemplate dancing, when I struggle walking” were some of the comments. I have seen a similar backlash when I, as a member of the MS Trust Social media team, have posted stories about some amazing people with MS that have done extraordinarily things such as running marathons or climbing mountains. The people who can’t do these things and let’s face it, there are quite a lot of us, felt like people with MS are portrayed as some super heroes and that wasn’t what their day to day life was like at all.

MS in the Media

When the media picks up stories about people with MS they often pick up on the very extreme cases, there will be your “Super Hero” stories or there will be the scary stories about the very severely affected , who might be very limited in what they can do. But the fact is that people with MS are can be both these ends of the spectrum, and most of us will be in the middle rather than like the cases reported in the press.

So how do you raise awareness of something that is so varied?

There isn’t one person that could become the poster boy/girl of MS. If you looked at me you wouldn’t be able to guess that I have MS, but my grandfather who had MS as well, could not walk and was in a wheelchair, and might have been easier to spot in a line-up of potential MS’ers, if you had asked the general public. A lot of us with MS live with it as an invisible illness, Trishna herself talked about her MS fatigue a symptom I know far more than I want to. It is a symptom that can really affect your life negatively, yet it is very hard to explain to people outside the MS world as people might mutter “we all get a bit tired now and again” when you are trying to explain how exhausted you are. Also, weird symptoms like Vertigo, the MS hug and visual problems makes an entire stable of annoying things that you will have to try to explain to friends and family.

On social media I often see people with MS being told “But you look so well” and yes I have had that said to me as well. This is why it is so hard to raise awareness of MS. To really explain MS to the general public you would need almost a whole chapter of a book instead of a snappy one liner. Basically it is a condition both very hard to live with AND to explain to others!

Bringing it back to yesterday’s show, yes I agree fully that far from all people with MS could do something like Trishna, I know I wouldn’t. But let’s face it lots of people without MS wouldn’t either! She is one amazing woman, who is working very hard at managing her MS. But the thing to take from this is that we are all very different and wouldn’t it be fantastic if more people with MS could tell their stories, so the general public could understand how varied this condition really is?

What can we as people with MS do to raise awareness?

While we are waiting for the media to do so (well one can wish anyway) we can always just do our best to tell people about what MS means to ourselves, tell people on social media and in real life what living with MS really means, the good, the bad and the ugly. With MS awareness week coming up in the end of April why not make it a goal to teach some new people about MS, some friends some family. Ok it will not reach as many people as a show on the BBC but starting at the grass-roots is a good place to start. There are plenty of great resources on the MS Trust website that you can use for starting raising awareness.

MS Key Facts 
The different types of MS video
Dispelling the myths about MS 

But sometimes the best way to start is just by telling people how it is for you! Just like Trishna is doing herself.

Life doesn’t stop with MS: Everest by motorbike

5th March 2015 by laura.percival

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In September 2015 Tony King from Dorset, who was diagnosed with MS in 2010, will be taking part in a motorcycle tour over the Tibetan plateau. He hopes to achieve a lifelong dream by riding to Everest Base Camp.

Tony started riding motorbikes at the age of seven. Encouraged by his dad and elder brother he was competing in local trials by the time he was eleven. This meant that he was competing on the same routes as adults and was nicknamed ‘Nipper’ because he was the youngest at these events.

Tony and his dad toured the UK taking part in trials across the country. He competed in nationals, local events and also the Scottish Six Day Trial (SSDT) at Fort William.

With the start of the new millennium Tony took up a new challenge – enduros, which are long-distance cross-country competitions. For ten years he competed at both national and local levels. But 2008 saw Tony back up in Scotland for the SSDT at the age of 40. He had made a promise to himself and he completed the trial, despite not having competed in trials for a number of years.

Diagnosis of MS

In 2010 problems with vision, together with some balance issues, led to a diagnosis of relapsing remitting multiple sclerosis (MS). Twelve years previously Tony had had some difficulties, but nothing had been identified. Following the death of his father and with this diagnosis he decided to go back to trials. Competing at a lower level than previously, he is still able to ‘twist a throttle’. Tony is currently having a relapse with double vision so is using an eye patch to help him maneuver through the markers.

During this time Tony continued riding on the road. With a group of friends he’s spent a number of holidays exploring the winding bends of the French Alps. Also, with his very understanding wife as pillion, a trip through scenic France to the Pyrenees visiting the famous Col de Tourmalet.

Currently Tony has five bikes, a variety of on and off road, all of which are being ridden. He has a Ducati Hypermotard, Montessa 4RT 260 and a Gas Gas EC300. His 1972 Ducati Scrambler is an ongoing renovation project, but is also a great local ride with 1,000 km on the clock this year. He also has a Honda TLM 260R, which is a work in progress – Tony has sourced many original parts and continues to compete at local events on this bike. He enjoys perfecting his bikes, making titanium exhausts and spindles, taking as much weight out as he can.

Following a dream

Everest has been a lifelong fascination for Tony. He has explored different ways to visit Base Camp, but with the difficulties of Tony’s MS, trekking wasn’t an option. Finding Extreme Bike Tours is a perfect solution. This year’s trip will be a chance to realise a lifelong dream and show that life doesn’t stop with MS. It will also raise funds for the MS Trust, who provide help and support to people with MS.

“None of this would be possible without the support of my wife, Fiona” said Tony. “We are a great team and to be able to go to Everest Base Camp, on a Royal Enfield, with Fiona as pillion is fantastic.” Tony and Fiona met in 2004 and married in Dubai in 2008. Fiona has always been interested in bikes, riding pillion with her dad, but never a rider herself. Her grandfather was a motorcycle courier in World War 2. Tony said, “I would also like to thank Zander from Extreme Bike Tours for his help and support with helping me to achieve my lifelong dream.”

Visit Tony’s online fundraising page

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