you oughta know....

MS Week 2012 is drawing to a close.

It's a chance to try and raise awareness about the challenges people with MS often face and is also a chance to raise some much needed money to fund the research that will one day help us find a cure.

The MS Society has made some films to mark the occasion, and as this is a subject close to my heart, I thought I'd share them here instead of listing my earworms as I usually do on a Friday.  The films are an attempt to try and show people what some of the most common symptoms of MS feel like: problems with the loss of feeling in the hands; tight, constricting pain across the chest (the so-called "MS hug"); problems with walking and mobility.  Now, I don't suffer too badly from any of these, although I have got some loss of sensation in my hands and struggle a little bit with some things and I've started to drag my left leg a bit), but I think the films are pretty good and well worth a couple of minutes of anyone's time.

The Boxing Gloves Challenge: put on a pair of boxing gloves and try to make a cup of tea.



This MS Week, join the fightback against multiple sclerosis, by helping fund research to find a cure http://www.msfightback.org.uk

What is it like to live with MS?

MS is destructive and attacks at random. People are usually diagnosed in their 20s or 30s. This film simulates the problems many people with MS have with using their hands, just one of the symptoms they live with every day.

Other MS symptoms include problems with balance, vision, fatigue, bladder, bowel, speech, memory and muscles.

The Corset Challenge: put on a corset and climb the stairs.



This MS Week, join the fightback against multiple sclerosis, by helping fund research to find a cure http://www.msfightback.org.uk

What is it like to live with MS?

MS is destructive and attacks at random. People are usually diagnosed in their 20s or 30s. This film simulates the 'MS Hug' - a tight constricting pain around the chest - just one of the many symptoms people with MS live with every day.

Other MS symptoms include problems with balance, vision, fatigue, bladder, bowel, speech, memory and muscles.

The Wellies Challenge: fill your wellies with sand and walk to the postbox.



This MS Week, join the fightback against multiple sclerosis, by helping fund research to find a cure http://www.msfightback.org.uk

What is it like to live with MS?

MS is destructive and attacks at random. People are usually diagnosed in their 20s or 30s. This film simulates the problems some people with MS have with walking and balance; just one of the symptoms they live with every day.

Other MS symptoms include problems with balance, vision, fatigue, bladder, bowel, speech, memory and muscles.

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Another date for your diary: it's World MS Day on 30th May... another chance to try and raise awareness and money to fight this damn condition.  It's also another excuse for me to post my favourite video. 

You have been warned.

As you were.  Enjoy your weekends, y'all.  It's a long one here, and I'm off here for dinner tomorrow. Mmmm.

beautiful day....

It's MS Awareness Week 2010, and the theme this year is "The Right to a Full Life". As the MS Society website explains:

"Although many people have heard of MS, few people understand the complex, unpredictable, and potentially debilitating effects of the UK’s most common neurological condition affecting young adults.

'The Right to a Full Life' is the theme for this year's Week. Alongside raising general awareness about MS we’ll also be explaining how people can join our fight to help those affected by MS gain the healthcare, independence and support they deserve to lead a full life"

There are lots of misconceptions about multiple sclerosis, and in their ignorance, people tend to assume the worst when they hear that someone has MS.... that it's a death sentence, that you are certain to end up in a wheelchair.  Think about the coverage of Debbie Purdy's courtcase to win the right to die: is that your image of MS? that you become so debilitatingly disabled that you only want to die?  Only this week, I received word from our travel agent that South Africa Airlines were going to have a wheelchair ready for me at the airport on Saturday, and that they have arranged for special access onto the plane.  All this because I had to declare my medical condition and the fact that I will be carrying needles onto the plane when I booked the ticket.  It's not really SAA's fault that they have assumed the worst about my condition, because MS describes a multitude of possible outcomes: I'm fit enough to run a half marathon, but plenty of other people with MS aren't so fortunate.  Rather than spend time worrying about it, I'll simply turn up at the gate this weekend and laugh in the face of their wheelchair, but it does rather highlight the issue that multiple sclerosis is a disease with a thousand faces and one that affects everyone differently.

I'm not a big fan of U2, but this video - made by the Multiple Sclerosis International Federation (MSIF) for World MS Day last year and which I think I've posted before - covers it quite nicely, I thought.... especially that whirlwind of emotions you experience when you're first diagnosed.



If MS Awareness Week helps even a few people have a better understanding of the condition, then it's surely been well worthwhile.

I'm not here to lecture anyone (not about this, anyway), but if you find yourself at a loose end this week, then do go and have a look at the excellent MS page on wikipedia.  It's not a barrel of laughs having MS, but neither is it necessarily the end of the world. The more people know that, the better.

you're not alone you know.....

And so MS Week draws to a close. Well, at least it does around here. It's technically still going on until 3rd May, but this is going to be my final word on the subject. C. had a massive baking session last night and she made madeleines, chocolate brownies, chocolate chip cookies, oatmeal cookies and - the pièce de résistance - a huge baked New York cheesecake. She took them into work this morning as part of the MS Society's Cake Break event, and between the two of us, we raised £68.26..... C. herself sadly didn't get to sample any of her cheesecake, but I did, and it was splendid. In the event, no one actually came and asked me about directly about MS, but it was noticeable that someone who works near me caught sight of the distinctive MS Society balloons and was round like a shot to find out what was going on. It's a condition that affects an estimated 85,000 people in the UK, which doesn't really sound like a lot, but it's probably enough to mean that you are likely to know someone whose life has been touched by the disease. Take my office: as well as the lady who made a beeline for the balloons this morning, within spitting distance of my desk are a colleague who started experiencing symptoms about the same time as me but was diagnosed with MS a lot quicker, and just next to her is another colleague whose husband started injecting himself with Beta-Interferon at about the same time. There are a lot of us about.

I was really in two minds about dedicating the whole of this week to talking about MS, but I'm really glad that I did. Until this week, I wasn't really aware of how much difference the diagnosis has made to my mental attitude. I first started experiencing symptoms in 2005, and although I did my level best to cope with the uncertainty, it's only now that I realise how knowing that I have MS has enabled me to look forwards. As Queenie pointed out, knowledge is power. MS affects everyone differently, and so no one can predict how it's going to affect me in the future, but at least I now have access to a world of advice and treatment and support that was not available to me before. This is a very good thing. MS is a shit disease, and I wish that I didn't have it..... but I do have it, and there's nothing that anyone can say or do that will change that. What choice do I have but to face forwards and make the best of things?

I would say that I faced an uncertain future, but don't we all?


Lucy's Story

Waking up after her 25th birthday celebrations Lucy found she had pins and needles down the left side of her body.

She’d been experiencing strange, unexplained symptoms for a number of years but thought nothing of them. A keen horse rider, her back had given way while she was out on her horse only a few months previously, but now, lying in bed with no explanation as to why her left side was tingling she realised that this was the most unusual, and alarming, sign yet.

Her immediate reaction was to ignore the symptom – she thought it would leave and that it was the effects of exhausting birthday celebrations, but symptoms persisted and she soon made an appointment with her doctor.

She was sent for further tests but initial reactions from specialists were that she had experienced a minor stroke or had a trapped nerve. When she was diagnosed with multiple sclerosis (MS), Lucy says it was a complete bombshell.

She says: “I felt gutted. Who wants to be diagnosed with MS at 25 years old? I wasn’t aware of the condition or its affects but at the time everything seemed negative and scary. Over time I have learnt to deal with the news and I’m almost blaze about it now – I know there’s not a lot I can do, but I must remain positive and continue life as normal as possible.”

Now, just one year after receiving her diagnosis, Lucy, age 26 from Warwick, has been chosen as one of the faces for the MS Society’s new advertising campaign aimed at raising awareness of the condition and the charity.

MS is a condition of the central nervous system which causes the body’s immune system to attack myelin, a substance surrounding nerve fibres, causing confusion and delay in messages from the brain and spine.

The condition can cause a variety of symptoms including loss of balance and mobility, extreme fatigue, depression and mood swings. There is currently no cure and few effective treatments, but with the right support and information people can continue their lives.

Lucy mostly experiences vision and sensory problems and only recently regained the feeling in her hands – a symptom which previously meant she would place them in scolding water or on hot oven dishes without realising. She often feels pins and needles down one side of her face and experiences mood swings, but mostly manages symptoms well.

This year Lucy is due to marry her long term boyfriend, Tom, who, along with her family, has been a great source of support, strength and stability throughout Lucy’s diagnosis and the first year of her condition.

“Tom proposed while I was having tests for MS. It was a scary time for us but it meant a lot to me to know that he was prepared for the diagnosis outcome – regardless of what it was.”

Lucy is now studying for a Masters and felt pleased when she was told she’d been selected to appear in the MS Society’s adverts. She says: “People always tell me ‘I look so well’ – I think they expect people with MS not to lead a normal life. By taking part in the adverts I want more people to know about MS and show that although I can’t predict the future and things might not be so good, I’m not ashamed to have it.”

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Well there we have it. Normal service will be resumed shortly. I hope that this week hasn't been too boring for everyone..... I'd say that I won't be writing about the WTs for a little while, but with a spinal tap, an evoked potentials test and the start of my treatment, I think they'll be back here sooner rather than later. Well, that is unfortunately my life.

Have a great long Bank Holiday weekend y'all.

Earworms will be back next Friday with Lisa Rullsenberg in the hotseat. Should be good.

Thanks for your support everyone.

what difference does it make?

In case you hadn't got the gist by now, or if you're just passing through, It's MS Week - a chance for the MS Society to get loud about multiple sclerosis, raising awareness of it by reaching out to people who don't know much about it. I've got MS, and I've been talking about it all week. Well, and before that too, and most likely after...but definitely during the week. Anyway. You get the general idea, I'm sure.

After diagnosis, the MS Nurses at QMC became the epicentre of my medical world. They, and not my GP or my neurologist, will be the first people that I should contact about anything to do with my condition; they will be the ones who organise my appointments, arrange my treatment schedule, teach me how to inject myself correctly and generally make sure that I'm okay. The very first thing that happened to me after my neurologist decided to make a diagnosis was that an appointment was made to attend the hospital's MS clinic and to meet an MS Nurse for the first time. As well as talking me through the various treatment options and showing me the various bits of apparatus that come with each one, she gave me a whole pile of literature about the condition. When I attended the Disease Modifying Drug clinic a week later, one of the other MS Nurses helped me select a whole load more. There are all kinds of leaflets: ones that help you understand the drugs you are asked to choose between; ones that help you understand the basics of the condition; ones designed specifically for carers; ones that tell you about the pain associated with MS and the various pain management options available.... all kinds of stuff. There's a whole lot more of this kind of information also freely available on the MS Society website, as well as a whole community on the forums there waiting to offer advice and support. Being diagnosed with MS could potentially have been overwhelming, but the support on offer from the NHS and from the MS Society has been really helpful (I actually emailed the society the other day with a very specific question about the drug I am planning to take, and they mailed me back a couple of days later with a very detailed and specific answer from their researchers... they're a fantastic resource).

In one of the leaflets, there's a section on who you should tell about your diagnosis. Of course, there's no right answer to this question, but it offers up a few things that you should consider. It's an interesting question, and one that has been very much on my mind. Of course, I know that - theoretically speaking - I've already told the whole world about it here.... but although a good number of people I know, friends, family and colleagues alike, occasionally stop by, they're still very much in the minority. My mum and dad know, of course, and I imagine that my two brothers and other family members have heard. I've not specifically mentioned it to my friends, although word has got around and I've had lots of supportive phonecalls and emails and things. Work colleagues are another kettle of fish though. Some of the more interesting sections in the MS Society literature deal with the question of whether or not you need to tell the people you work with. There's no legal obligation, but there are lots of different things to think about: is it something that it might be helpful for a few people there to know? What will I gain by telling them? What will they gain by knowing? I've told a couple of my closest colleagues, and a few other people have probably worked it out on the basis of the various hospital appointments and clinics they know I've attended over the last two years. But everyone else? My condition is not really a secret, but do I really want to advertise the fact to everyone and to take all of the baggage that might come with that?

I need to make up my mind soon. As part of MS Week, it's the MS Society Cake Bake tomorrow. As I'm sure you can guess, the idea of this is to bake some cakes and then sell them to raise some money (and awareness) for the MS Society. C. is a keen baker, and she's got the fundraising pack containing some balloons and a collection box, and she's busily baking so that she can take a whole pile of home baked goodness into the office tomorrow to raise some money. She's going to give me a cake too so that I can do the same. It's brilliant, but it begs the question of whether I should tell people in the office what it's all in aid of, and why we're so personally interested in the cause. I don't have to, obviously, but I think I'm going to. It's not a secret and it's not something I'm ashamed of. Why should I hide it?

I face a similar decision around the half-marathon too. The MS Society are going to send us a fund raising pack and the famous orange running vests, and I'm planning to set up a Just Giving page so that the two of us can raise money for the charity together. Together with a picture of the pair of us in the Society's running vests on the homepage, should I also say on that page why we're doing what we're doing? I don't have to, but I think I want to. It's an act that will probably have consequences in the way that people see me, but then again, why hide it? You never know - it might even help a few people to understand multiple sclerosis a bit better too.

What's that worth?



Grace's Story

When Grace Rodgers couldn’t feel the clothes on her body she decided something was wrong and she needed to visit her doctor.

For weeks, she has been experiencing numbness in her hands and feet and a loss of sensation right across her body. Her vision in her left eye was blurred and problematic and gave her cause for concern.

“I visited the doctors and went for some tests but they were unwilling to confirm anything right away. A few months later, whilst I was cooking dinner my eyesight went completely. It was a Sunday night, so on the Monday morning I went back to the doctors and they admitted me to hospital where I stayed in for further tests.”

Only 5 months previously Grace’s sister had died of a stroke and Grace had obvious concern that it was something just as worrying. “When they told me I had MS I felt relieved, at least I knew what it was and I’d be able to continue my life.”

Grace was 37 years old, married with three teenage sons when she received the news she had multiple sclerosis – a condition of the central nervous system which causes the body’s immune system to attack myelin, a substance surrounding nerve fibres, causing confusion and delay in messages from the brain and spine.

MS can cause a variety of symptoms including loss of balance and mobility, extreme fatigue, depression and mood swings. There is currently no cure and few effective treatments, but with the right support and information people can continue their lives.

Now, Grace, age 48 from Belfast, has been chosen as one of the faces for a national campaign to raise awareness of the condition.

“I’m excited to take part in the advert and I’m willing to share my story to help others. For me, taking medical retirement at 37 years of age wasn’t great and my life has gone in a different direction to what I expected, but it’s not the end of the world,” Grace explains.

“I now volunteer a few days a week in the MS Society’s offices in Northern Ireland and it’s something I really enjoy.”

11 years after her diagnosis, Grace mainly experiences problems with her mobility. “I can’t walk far and use a stick almost constantly. If I’m going out I’ll use my scooter and we’ve just had the car adapted so I can drive using hand controls instead of relying on my feet and thankfully, although I still have optic nerve damage, my eyesight has returned to almost normal – I want to remain as independent as possible.”

She explains that the majority of people she meets view MS as a very negative condition. “It annoys me that so many people think you’ll automatically end up using a wheelchair all the time and that the condition will progress rapidly. I might get by using a mixture of my stick and scooter for the rest of my life – none of us know how things will turn out but you must remain positive.”

the future is unwritten....

It's MS Week from 27th April to 3rd May. It's an opportunity to try and raise awareness about a condition that affects some 85,000 people in this country, including me.... so I'm spending all week talking about it. Alright?

I've tried really hard to be positive about my condition. Even before I knew it was multiple sclerosis, when it was still an undiagnosed condition with an unknown prognosis that a friend of mine decided should be called the Weirdy Tingles - the WTs - I've tried not to dwell on what this might be and what it might mean for my future. Perhaps it's a form of self-defence, but I'm a very analytical person and, faced with something like this, I've reverted to type and have steadfastly refused to have an emotional reaction. I know it sometimes sounds like ludicrous stoicism, but I genuinely do not see the point in reacting to something that it is totally outside my control. Whatever I have, however it is going to develop, and whatever it is going to do to me.... what the hell can I do about it? Yes, it is frustrating. Yes, I do worry about what is going to happen and how I'm going to feel tomorrow, next week, next year..... but what would be the point of crying over it?

I am human though, and it is simply impossible not to wonder what my future holds. No matter how rational and analytical I am, I can't stop my mind from wandering. Do you know what worries me? The thought that I might start to lose the use of my legs; that I might have my mobility seriously impaired; that I might be unable to rely on my already weakened arms and shoulders to bear my weight on crutches or to push a wheelchair; that I might end up immobile and unable to take any meaningful exercise.... MS can take away all sorts of things: your eyesight, your sexual function, your ability to think straight... but I'm worried about my mobility, and with every stumble and every fall I take, I worry about it all the more.

But really, even if that is to be my future - and it's far from certain - there's not a damn thing I can do about that now.

Not a damn thing.

I'm not sure that makes it any easier to cope with, but why worry about it?

Why worry?



Ian's Story

Ian had been experiencing a variety of unexplained symptoms for around two years, including a loss of sensation in his legs, difficulties with his balance and an inability to co-ordinate his movements, but when he started experiencing blurred vision in his left eye he decided a trip to the doctors was necessary.

He didn’t know what the symptoms meant, and had certainly never heard of multiple sclerosis (MS), but he thought they must be related to a chemical he was working with in his role as an injection moulding operator at a local factory.

Ian went for tests and an MRI showed lesions on his brain; doctors confirmed he had MS - a condition of the central nervous system which causes the body’s immune system to attack myelin, a substance surrounding nerve fibres, causing confusion and delay in messages from the brain and spine.

MS can cause a variety of symptoms including loss of balance and mobility, extreme fatigue, depression and mood swings. There is currently no cure and few effective treatments, but with the right support and information people can continue their lives.

At the time his diagnosis Ian was 27 and married with two young sons. He’d never heard of the condition but was instantly distressed – presuming it was a serious life-shortening condition.

“I had a complete lack of understanding; I thought my time was up, but of course, it hasn’t been like that at all,” explains Ian.

Now, almost 10 years after his diagnosis, Ian, age 36 from Wales, has been chosen as one of the faces of the MS Society’s new advertising campaign to raise awareness of the condition and its symptoms.

Ian mainly experiences mobility problems and uses a wheelchair much of the time. He made the decision to leave work in 2004 after a series of relapses, bought on by stress, lead him into a spiralling depression. Since then, with access to the right treatments, he has managed to lead a happy, active and independent lifestyle.

“After leaving work I wanted to do something positive, so I went along to my local branch which had just started a drop in. It was great and really opened my eyes to what support was available. I started taking part in disabled sport and now I’m studying holistic therapies at college with the aim of working in reflexology,” explains Ian.

Ian was only too pleased when he was asked to take part in the MS Society’s advertising campaign. He says, “My motto is that ‘I have MS but it doesn’t have me’ – it sounds cheesy I know, but there are many positives to come out of a diagnosis. Media coverage can be negative and that’s scary for people newly diagnosed. I hope my story will show people that MS can be a catalyst for new opportunities and that life doesn’t have to stop when MS starts.”

skip a beat and move with my body....

It's MS Week - a chance for the MS Society to get loud about multiple sclerosis, raising awareness of it by reaching out to people who don't know much about it. I've got MS, and I'm spending all this week talking about the condition and trying to get a bit of exposure to the Society's campaign.

I exercise quite a lot: 6 days out of 7 on most weeks, and more often than not, every single day. I don't run marathons or anything, but I swim a couple of times a week, run in excess of ten miles (in 4 mile chunks, mainly) and I play football once or twice a week. Let's be absolutely clear about one thing: I don't really enjoy taking exercise. I enjoy having done exercise, and I feel fat and lazy if I don't exercise, but it's only on the very rare occasion that I would really, honestly be able to say that I had enjoyed a run. The reason I take so much exercise is for purely defensive reasons: I like my food and I like a drink or two. If I didn't exercise, then I would face the stark choice of either watching what I ate, or simply getting fatter. I choose exercise and eat more or less what I want. There was a time, when I was in my twenties, when I was about five or six stone heavier and was doing very little exercise. I've seen the photos, and I don't want to go back there. Improved diet, exercise and - most importantly - a nasty bout of bacterial food poisoning, soon put paid to that excess weight, and I'm now pretty skinny... but the face that stares back at me from the mirror is not the face of the thin person, and I don't think it ever will be.

The reason I mention this is because, over the last few months, I have found taking exercise to be increasingly difficult. My symptoms started, in August 2005, with a numb hand. That numbness soon spread across my body and down my legs, and in the end I was forced to drop out of the London Triathlon (1500m swim, 40km cycle, 10km run) that I had been training so hard to compete in. My name is on the 2005 event t-shirt, but I was forced to watch as a spectator. I kept running, and soon I began to get used to the loss of sensation and was almost able to put it out of my mind. As time went on though, and as the months turned into years, I began to notice that things were getting harder. The progression of multiple sclerosis is measured by most sufferers by the onset of the relapses that signal the development of another lesion on their central nervous system and a whole new batch of symptoms. I can't honestly say that I have noticed a particularly momentous event that triggers a new set of symptoms, but I have noticed that the symptoms that I already experience have been getting steadily worse for some time, and the little things that I take for granted have been getting harder. I still run, I still swim and I still play football, but all of these things are becoming more difficult. I am slowing down, my balance is starting to go and I'm losing the feeling in my legs and the strength in my arms and shoulders. Only about 20% of MS sufferers actually end up in a wheelchair, and I don't like to dwell on possible futures, but I'd be lying to you if I was to say that I wasn't a little bit worried about where this progression is going to end up.

With those kind of thoughts at the forefront of my mind, I didn't need very much encouragement to come round to the view that starting on a course of disease modifying drugs, to be injected every week into my thigh, was probably a good idea. There's reasonable evidence that starting on beta-interferon will help to slow down the onset of the disease and the progression of my disability. There are some side-effects, but this was good enough for me. My family are worried that I do too much, but I won't feel like MS has really affected my life until it really stops me exercising. Until that time, and no matter how slowly I might have to do it, I'm going to continue running, continue swimming and continue playing football. It's going to take more than an incurable, progressive neurological disease to stop me.

In fact, you know what? If they'll have me, I'm thinking of donning an orange vest and - together with C - running the Robin Hood Half Marathon in September this year to raise money for the MS Society. If we did, would you consider sponsoring us?


Sue's Story

Sue experienced her first symptoms of MS when she was hurriedly planting bulbs in her garden.

“I remember coming inside as it had just started to rain, I was rushing around and my foot went numb. I thought it was odd, but over the next 24 hours the numbness gradually made its way up my leg. I was frustrated – I didn’t have time to be ill, I had a busy job and busy lifestyle and didn’t want to be off work.”

Much to Sue’s dismay, the numbness did not leave and after a trip to the doctor she was rushed straight to hospital with a presumed damaged spine or a possible stroke.

“I had an MRI and a lumbar puncture, which I found to be a most painful procedure, but nothing was confirmed. I felt so useless being in hospital I started helping the nurses make the beds!”

Doctors told Sue she would experience problems with her leg for the next few months, but that she shouldn’t worry too much.

She put the experience behind her and began a new job, but eight months after leaving hospital the numbness in her leg returned. Doctors confirmed almost immediately that Sue had multiple sclerosis – a condition of the central nervous system which causes the body’s immune system to attack myelin, a substance surrounding nerve fibres, causing confusion and delay in messages from the brain and spine.

MS can cause a variety of symptoms including loss of balance and mobility, extreme fatigue, depression and mood swings. There is currently no cure and few effective treatments, but with the right support and information people can continue their lives.

Now Sue, age 59 from Dunfermline, has been chosen as one of the faces to front the MS Society’s national campaign to raise awareness of the condition.

“The MS Society has provided me with so much hope and support over the years that I was only too happy to oblige. I’m representing the older members of society with the condition – and that’s fine by me!”

For the first two years of her diagnosis Sue’s MS symptoms were very aggressive. A year into her diagnosis she had to leave work, something she found terribly hard, and she was in and out of hospital around four times a year. In 2000 she lost the use of her legs and spent much time in rehabilitation learning firstly to stand and then to walk again.

“I felt frustrated that there seemed to be very little support available. If I couldn’t work I needed to do something to keep my brain active so I joined the MS Society and successfully helped campaign for access to disease modifying drugs. I signed up to the Society’s Research Network which has helped me a great deal in understanding the condition and has kept me busy over the years.”

Taking regular medication since 2000, Sue’s condition has stabilised and she has not been admitted to hospital for over eight years.

“I experience problems with mobility and use a wheelchair regularly, but I manage to walk some distances. My husband and I have moved to a bungalow now which helps a great deal. With his support and lots of good will, I can manage one way or another to achieve most of the things I want to do.”

“The biggest misconception I find in the MS community is that people think nothing is being done to help find a cure. Millions of pounds are being spent every year on MS research, and we are closer now to finding effective treatments than we’ve ever been before – something that will give many people hope."

but this is no easy ride....

It's MS Week - a chance for the MS Society to get loud about multiple sclerosis, raising awareness of it by reaching out to people who don't know much about it. I've got MS, and I've decided that every post this week is going to be dedicated to talking about this nasty little sod.

I had a stark reminder yesterday of how much my condition affects the people around me. In some ways, I'm the lucky one: I know exactly how I feel at any given time, and although I may not like it, and although I may be worried about what's going to happen in the future, happy or sad, I know how I am within myself. My friends and family do not have that luxury. They're concerned about me, of course, and they may be very well-informed about MS, but they simply cannot know how I am feeling. I was chatting away to my mum on the phone last night, and as well as hearing the happy news that my elder brother has found himself another job, my mum was naturally keen to know how I'd got on with the MS Nurse a week or so ago and at the Disease Modifying Drugs clinic the other day. I was merrily filling her in with the details of which drug I'd chosen, how I needed to go for a lumbar puncture and an evoked potentials test, and all that jazz, when my mum burst into tears and told me how sorry she was.

She's my mum, so it's only natural that she should be upset on my behalf, but I was still a tiny bit taken aback. For me this MS is what it is; I have it and there's not a damn thing that can be done about that now. For my mum though, even though she was a nurse and she's been married to a doctor for the best part of 40 years, so between them they probably know more than most about the condition, it must still feel a little like the world is falling around the head of one of her children, and she's upset on my behalf. It doesn't feel like that for me, but I have a very analytical and rational brain and an emotional response to something I can't do anything about seems to me like a waste of energy that could be better channeled into simply trying to get on with my life.

Although there seems to be some sort of a genetic component to it, MS is not a hereditary disease. Even if it was, it's still nobody's fault, and the last thing I'm going to be doing is running around pointing the finger of blame at my parents.

Which brings me to this evening's material from the MS Society. This one's a heartbreaker. Think that only adults get MS? Think again.



Stuart and Lucy's Story

With two cases of multiple sclerosis (MS) in the family, the Woods contacted the MS Society and said they wanted to help raise awareness of the condition.

Stuart Wood, age 40, was diagnosed with MS in 1996; his daughter Lucy, age 5, was diagnosed in August 2008.

The family are keen to show that MS can affect children as well as adults and have been chosen to take part in the MS Society’s latest advertising campaign to raise awareness of the condition. Here they share their story of living with MS.

Stuart was 27 and playing a game of competitive Sunday morning football when his team mates asked if he was drunk.

He’d been experiencing unusual symptoms – like pins and needles and a loss of sensation in parts of his body – but he chose to ignore them. When his vision in his left eye became blurred, and then went completely, he decided it was time to visit his doctors.

“I was put on a drip and my eyesight came back but a few months later my sight went in my other eye,” he explains. “I was slurring my words and things weren’t right but a diagnosis seemed to take what felt like forever.”

He started to investigate possible causes on the internet and so when doctors told him he had MS, he wasn’t too surprised. He explains: “When the doctors told me I had MS I was in pain with my symptoms and I immediately thought I’d spend the rest of my life in a wheelchair – but it hasn’t been like that and I’m glad.”

Stuart now wears a brace on his right foot and his right hand is constantly numb but he takes regular medication which helps. He works full time as an estate manager – a job that he really enjoys. He said: “People always ask me why I work full time but I couldn’t never just pack it in because I have MS – it would be like I was giving up. Quite a few people went for my job but I got it, I couldn’t believe it, it goes to show MS doesn’t stop you achieving what you want.”

Throughout Stuart’s condition he never thought that his symptoms would be replicated in his daughter. “When Lucy was diagnosed with MS I blamed myself and I still find it hard. I’m not an emotional person but I completely broke down when Sharon and I were told. It’s still hard to understand but we’re gradually learning to deal with it.”

Lucy was 3 when she started experiencing symptoms that would eventually lead to her diagnosis of MS. She developed conjunctivitis in her left eye and despite the drops was soon commenting that her vision was “all dark”.

The family visited the opticians who discovered swelling at the back of her eye. Doctors initially thought the cause was a tumour but referred Lucy for more tests which identified a possible diagnosis of ADEM – a neurological condition similar to MS but found more commonly in children.

Lucy reacted well to steroids, but over the next few months her health would fluctuate – from having no vision in her right eye to taking much longer than other children to recover from a water infection and finally collapsing at school with a suspected stroke.

Her mother Sharon explains, “It was a difficult time for us; like having a black cloud over our heads and trying to see our way in the dark – we just didn’t know what was going on and we just wanted Lucy to be ok.”

In August 2008, after several symptom-free months, Lucy collapsed on the kitchen floor at the family’s home after celebrating her 5th birthday. She was admitted to hospital and Sharon and Stuart began having thoughts that her symptoms could be related to MS. Tests identified lesions on her brain and doctors confirmed Sharon and Stuart’s suspicions.

“It was like being in a car crash,” explains Stuart. “It was just so difficult to hear. The only advantage was that we knew what MS was and what her symptoms might be. We could deal with the condition better than if we’d only just heard of it.”

Lucy’s condition now is fairly stable and her teachers report she’s doing well at school but struggles a little with fatigue and walking long distances.

The family remain positive about their futures and have found much support from the MS Society and other families in a similar situation. “Knowing Lucy has MS is never going to be easy but we’re slowly learning to accept it,” Sharon explains. “Stuart blamed himself at first, but we can’t look at the situation like that. We’ve received a lot of support from other families in our situation and that helps.”

ill communication....

It's MS Week from 27th April to 3rd May. It's an opportunity to try and raise awareness about a condition that affects some 85,000 people in this country, including me. As I said the other day, it's a condition that most people have heard of, but one that not many people know very much about, and a big objective for this week is to try and dispel some of the misconceptions that people have.

I've been in two minds about doing this, but I've decided that I'm going to dedicate the whole of this week to some of the material being produced for this campaign by the MS Society. If there's one thing I desperately want to avoid, it's to allow myself to become defined by my illness, and how can I seriously expect other people to see past it when I keep talking about it all the time myself? I've only been recently diagnosed with multiple sclerosis, but I've been suffering from the symptoms and going through the process of being diagnosed since August 2005. In that time, although I've tried not to go on about it too much here, it has been (all too literally) very much on my mind, albeit often in the form of background noise. It was an ever-present and most unwelcome undercurrent to every day. Since early-March this year, when my neurologist decided that I should be formally diagnosed with multiple sclerosis, things have picked up speed, and I've been attending clinics, meeting MS Nurses, booking myself in for a lumbar puncture and choosing which drug I'm going to be injecting myself with every week for the foreseeable future. I've chosen to be honest and open about all of that here, probably ensuring in the process that people increasingly see me, and perhaps I even see myself, as being more about the multiple sclerosis and less about the earworms and music and exercise and my brilliant career and all sorts of other random nonsense that are also part of my makeup and have been for a lot longer....

It's a tough one, and I was already beginning to wonder if perhaps I should write about the WTs less and other things more. But you know what? To hell with that. I'm going to continue to write about whatever takes my fancy, and right now (and without wanting to sound like I'm on X-Factor or something), I'm on this ridiculous journey and I'm going to write about that. In doing so, I find that it's helping me to work things out in my own head (oh, if only that were literally true....) and I hope it might also help some of you to become more aware of this horribly common neurological disorder and how it can affect people.

As the old adage goes, I might have MS, but MS doesn't have me. I'm not going to NOT write about it because I'm worried about what people might think of it and of me. Isn't that exactly the kind of thing that MS Week is trying to change? I think it is, and so over the next few days, I'm going to write about pretty much nothing else but MS, and to hell with what people think.

First up is a face familiar to many football fans: Danny Wallace:



Danny's Story

Danny was in his 20’s and at the top of his game playing professional football for Manchester United when he first starting experiencing symptoms that would eventually lead to a diagnosis of MS.

He was unable to bounce back from injury and was spending an increasing amount of time in the treatment rooms.

“At first I thought it was the usual injuries that all professional footballers got, but after a while things didn’t seem right,” he explains.

The turning point for Danny was in 1993 when he signed for Birmingham City. He began to feel pins and needles in his legs and feet and would feel incredibly tired after games. It was the smaller symptoms of the condition that had a major effect on his every day life.

“I would get frustrated that my feet were numb or I had pins and needles in my legs, I just wanted to play football. I couldn’t understand what the problem was.”

After deciding to retire from professional football in 1995, Danny went to speak to a financial advisor about his pension. He was sent for medical tests which diagnosed him with having multiple sclerosis - a condition of the central nervous system which causes the body’s immune system to attack myelin, a substance surrounding nerve fibres, causing confusion and delay in messages from the brain and spine.

MS can cause a variety of symptoms including loss of balance and mobility, extreme fatigue, depression and mood swings. There is currently no cure and few effective treatments, but with the right support and information people can continue their lives.

Now, almost 12 years since his diagnosis, Danny, age 45, has stepped forward to be one of the faces in the MS Society’s new campaign to raise awareness of the condition.

“Since being diagnosed I’ve spent much of my time raising money for others affected by MS and I was happy to take part in the campaign. It’s important to help others understand what the condition is,” he said.

“When I was first diagnosed I kept my condition quiet and only told close family and friends. I found it embarrassing and I couldn’t come to terms with it. Five years after my diagnosis I was able to come out and tell people.”

Unfortunately for Danny, his MS stopped his career as a professional footballer reaching its full potential.

“I would have definitely got more opportunities had I been fit while I was at Manchester United – I couldn’t play as many games as I wanted to and that had a negative affect on my career for sure.”

Now Danny is retired he helps raise money and awareness for MS, along with looking after the family home and his children. His symptoms include fatigue, pins and needles in his legs, problems with walking and regular back spasms, especially in the morning.

“I take regular medication, which helps, but walking is always a problem. I’ve even been out with friends in a social situation and people have presumed I was drunk. I might have had a few drinks but I certainly wasn’t drunk. It made me feel disappointed in people – that they could just presume that that’s the case, but I suppose they weren’t to know.”

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Spread the word. More like this tomorrow.