Image: Andy Keen (Director of Aurorahunters / Chief Executive, Neuropathy Trust)

From Neurology Ward to the Northern Lights
By Andrew Keen

 

Not so many years ago I found myself lay in a hospital bed on a neurology ward, paralysed from the waist down and facing an extremely bleak and uncertain future. Now, as well as being the Chief Executive and Founder of the Neuropathy Trust, I’m also a successful Aurora Hunter fulfiling peoples’ dreams, often lifelong dreams, of witnessing the awe-inspiring natural phenomena of the Northern Lights.
I was a typical youngster; full of life and boundless energy, self-confidence and ideas. My ambition was to follow in the footsteps of some of the great civil engineers including, for example, Isambard Kingdom Brunel, George Stephenson, John Rennie – the list goes on. With this in mind, at the age of 20, I began to study for a degree in Civil Engineering. Everything was progressing really well until one fateful morning when I woke up to to find that I couldn’t move – I was literally paralysed from the wast down.

I was admitted into my local hospital where I spent the next couple of weeks being subjected to some basic diagnostic tests. I was eventually told that the cause of this sudden onset paralysis was a ‘non specific virus’ and was subsequently discharged from the hospital with no further monitoring or offer of therapy / treatment. The only thing that they gave me at that time was a pair of crutches and a wheel-chair, which I refused to get into. It took me a year to ‘learn’ to walk again – having to swing my legs out pendulum fashion in order to propel myself forward which, as anyone who has suffered from bi-lateral drop-foot will know, is not only extremely difficult but also highly embarrassing. The only way that I can describe it so that you are able to visualise it is if you were to image how a tin soldier marches – well, that was me.

As well as having an abnormal gait, I also had a great deal of difficulty with balance and position sense – particularly in low-light levels. I often found myself tripping over things such as rugs, stairs and uneven paving slabs. I also found walking downhill particularly difficult as my legs felt as though they had springs in the middle and I couldn’t control them properly. Moreover, I had additional complications including, for example, gastrointestinal problems, chronic pain (which I now know to be neuropathic pain) and sensory disturbance in my hands and feet. In fact, I often found myself cutting or burning myself without even realising it. I also found it extremely difficult to sleep – due to the pain levels – which, in turn, affected my overall mood. I attended over 70 hospital appointments during the following couple of years and, in the end, the doctor in charge of my case (I wish that I could name him) sat in front of me and had the audacity to say that ‘in my considered opinion this is all psychosomatic’, which in simple English means that he was implying that it was all in my mind. Needless to say, I told him what I thought of him in no uncertain words, slammed his door and never returned to that particular hospital. I’m telling you this because I know that there are an awful lot of you who have faced a similar situation with a doctor and I want you to know that I can relate to your frustration and to re-assure you that there is light at the end of the tunnel – it’s just a case of being seen by the right person – that being someone who is not only knowledgeable about Peripheral neuropathy and neuropathic pain but, of equal importance, someone who is capable of demonstrating a certain degree of empathy towards his or her patients. I refer to these people as ‘human doctors’ and for me they represent the very best of the Medical Profession.
I should also mention that, as a direct result of my illness, I lost many of my so called friends who simply couldn’t cope seeing me like this. As you may imagine, my confidence took a severe battering as a result of everything that was happening to me and, in the end, I found myself practically confined to the house.

I did eventually go on to make a recovery of sorts. The recovery was short lived, however, as I was in my parents garden one day and, without warning, my legs gave way and I collapsed to the floor. My father, Ian, said “enough’s enough” and he bundled me into the back of the car and rushed me out of County to a completely different hospital, the North Staffordshire Royal Infirmary (Now the North Staffordshire University hospital). I was whisked through A&E where I was seen by a young female junior doctor. Fortunately for me she was a bright cookie and recognised immediately that I had a neurological problem. At that particular time she thought that I had a condition called Guillain–Barré syndrome, which is an an acute inflammatory demyelinating polyneuropathy (AIDP), that affects the peripheral nervous system. GBS can cause life-threatening complications, particularly if the breathing muscles are affected or if there is dysfunction of the autonomic nervous system. The disease is usually triggered by an acute infection. Guillain–Barré syndrome is a form of peripheral neuropathy. Although GBS was ruled out at a later stage at least she wasn’t a million miles out in her diagnosis and, as a direct result of her actions, I finally ended up where I should have been in the first instance – on a neurology ward being examined by experts.

I was placed under the care of Consultant Neurologist, Dr Simon J Ellis. I will never forget the very first words that he said to me because it was literally the turning point in how I viewed my own illness and, dare I say it, the medical profession in general which, up to this point, was with a certain degree of contempt. In fact, let’s not pull any punches here, I was quite frankly disgusted, not to mention totally disillusioned by the way that I’d been treated. What Simon actually said to me was “Andrew, I can assure you that this is definitely not in your mind, that you do have a serious neurological disorder and, although I’m not quite certain what’s causing it at the moment, I give you my word that I shall remain tenacious in my search for answers”. I can’t begin to tell you how relieved I was when I heard these words because, although it wasn’t a diagnosis or, indeed, a cure it did re-affirm in my own mind that this wasn’t ‘in my head’, as had been previously stated and that I was now in ‘safe hands’. This, in itself, had a immediate impact – and an extremely positive one at that. I guess that you could also argue the fact that it also demonstrated, first-hand, the power of the placebo effect as opposed to nocebo effect, which I’d previously been exposed to. Whatever the case, it definitely made me look at things in a much more positive way and it also renewed my faith in the medical profession. I know that I’m not the only one who’s felt labelled and fobbed off by the ‘system’ because, over the course of the past 15 years or so since the formation of the Neuropathy Trust, I have spoken to many people – from right across the social and economic spectrum – who have been through a very similar experience and who have been treated the same way and have had similar thoughts to my own. In essence, like myself, they have been driven to to the point of despair.
At this point I would like to say that I think that doctors should realise that many people still place them on ‘pedestals’ and, as such, they are afraid to challenge their opinion(s) – particularly elderly people who have grown up to respect and not to challenge the opinions of the so called experts. Thankfully, with the advent of the internet etc., information is now becoming far more accessible than it once was and, more importantly, it’s also written in a language that most of us can understand. Saying that, I would also like to issue a few words of caution by saying that not all of the information out there in the public domain is medically accurate, some should be taken with a pinch of salt. Moreover, there is also an added danger – particularly when you’re poorly – of reading into things too much and coming to completely the wrong conclusion. This is particularly true in the case of Peripheral Neuropathy because the chances are that you may be displaying multiple symptoms, just as I did, which on the face of it can tie in with so many other disorders. At one time, for example, I was absolutely convinced that I had Multiple Sclerosis, which scared the living hell out of me. The lesson here is always double check things with the person in charge of your care. I would also like to make it clear that I am totally against the notion of the so called ‘expert patient’. It is, to my mind at least, more a case of being an educated patient, which enables us to make informed choices regarding our own health care.

Anyway, back to my story. Whilst I was on the ward I was put through a full neurological ‘work-up’ including, for example, neurophysiological testing, thermal threshold testing, MRI and CT scans, lumbar puncture and even a sural nerve biopsy. As you may imagine, some of these tests are not particularly pleasant – particularly the nerve biopsy, which has left me with a partly numb right foot and, if I accidentally bump that area of my body, sharp shooting pains up the right hand side of my lower leg. The tests eventually revealed that I was indeed suffering from an idiopathic or cryptogenic Peripheral Neuropathy, which basically means that I have PN with an undetermined aetiology. In fact, Simon has often referred to me as a ‘Diagnostic Dilemma’. Further tests over the years have narrowed it down a bit more and I’m now in possession of the handle ‘Autoimmune Vasculitic Mono-Neuritis Multiplex’, which basically means that the condition is autoimmune mediated and that it is affects the blood vessels and single nerve fibres across my body. It’s not a definitive diagnosis – but rather a description of symptoms. There is no cure, unfortunately, and the treatment is purely symptomatic – in my case steroids on an as and when needed basis.

Whilst I was on the ward Simon asked me if I’d care to meet someone with a similar condition and of course I grabbed the opportunity with both hands. I was young, I was extremely frightened and, to some extent, I felt alone so the opportunity to actually speak to someone who could relate to what I was going through was a read Godsend. The gentleman’s name was Jerry and he has spent approximately £20,000 of his own money at clinics in America and Canada trying to find a diagnosis and a cure for himself. Eventually he ran out of money and returned to the UK. One day he was at home in his lounge watching TV and his wife walked into the room. Jerry turned ’round to acknowledge her and he literally snapped his back – hence the reason that he was on the neurology ward. Jerry and I became close friends and supported one another. A few months after meeting Jerry he sadly passed away. Needless to say, I was absolutely devastated and, of course, given the fact that I’d been told that I had something similar to Jerry I thought “that’s it, that’s my prognosis”. Things took a downward spiral from that point onwards and, at one point, because I felt such a burden on my family I seriously considered taking my own life. I then thought what the hell am I doing thinking like this, I have a beautiful, caring family and I can’t do this to them and, what’s more, my nan bravely fought cancer for 20 years and despite her own health problems she always had a smile on her face and would help anybody in need. The first thing that I did after these terrible thoughts was to pick up a pen and start writing. One thing that I’d noticed whilst I was on the ward was that although there was plenty of information available on things like Stroke, Parkinson’s disease, Multiple Sclerosis and Epilepsy there was absolutely no information whatsoever on the subject of Peripheral Neuropathy. So, I researched it to the best of my ability and then sat down and wrote a booklet about it. This was then endorsed by a number of helpful neurologists including Dr. Simon Ellis and the late Professor P.K. Thomas – who was one of the world’s leading experts in peripheral neuropathy. My intention at that particular time was purely to ensure that people who were going through a similar situation to myself – and their family and friends – had some information to hand so that they could gain some comfort from it and not feel alone. Of course, it was one thing writing the information and a completely different thing having it published and distributed. After hours of racking my brain who to approach with regard to this – bearing in mind that I needed a totally unbiased sponsor – I approached the Ford Motor Company. In fact, I kept this poor girl, Karen White, on the ‘phone for over two hours. Four hours later I received a call from Karen to inform me that the company was going to pay to have it published and distributed to every hospital in the UK. You can imagine my reaction to this. Once the booklet had been distributed, I then decided to make it freely accessible on the internet, which caused an absolute flood of enquiries – up to 500 emails per week from all over the world. Bear in mind that I was still extremely poorly at this stage and barely able to lift my head from the pillow, let alone walk. Anyway, one day, my parents visited my house and they spotted this huge pile of emails next to my bed that I was slowly but surely working my way through and they asked what was going on. I told them what I’d done and there response was to say that ‘we’d better roll our sleeves us and help out then’. This was the moment that the Neuropathy Trust was born. Since then we have gone on to help tens of thousand of people around the world and have raised in excess of £1. 2 million for charity. We have also helped to raise the profile of peripheral neuropathy and neuropathic amongst the medical profession, as well as the general public. It should be noted that none of this would have been possible had it not been for the support, encouragement and goodwill of our subscribers, our medical advisory board, call handling ladies, our sponsors and of course our friends who man the support lines; Angela Geen, Diane Vaughan, Douglas Stephenson, the late Mrs Olive Briggs and of course my parents – Ian and Joyce Keen who have worked tirelessly – for absolutely no financial reward – on behalf of people affected by this condition since 1998. In essence, I couldn’t have achieved what I have achieved without the support of all of you and, for that alone, I will be forever in your debt.
There is still a great deal of work to be done, however, and the fight for improved disease recognition, diagnosis and treatment continues. As it stands now the emphasis is largely placed on the pain management side of things, which of course is extremely important as many people wait years and years for a diagnosis and it’s extremely important to get their pain under control as quickly as possible so as to ensure that they don’t go into a downward spiral and then experience the negative psychological effects attached to the disorder. In essence, Neuropathic pain has a profound impact on quality of life; leading in some cases to a myriad of secondary conditions including depression, sleep disturbance and impaired physical and psychological functioning.

What I’d like to see, however, is a greater emphasis being placed on diagnosis as I’m extremely keen to see the high proportion of people living with an undiagnosed neuropathy coming down. Our own research (looking at a sample of over 600 patients, for example) concluded that up to 67% of patients affected by PN fall into the Cryptogenic (undetermined aetiology) category – and up to 94% of these people are living on a daily basis with neuropathic pain. This is simply not acceptable.

One thing that I can assure you is that The Neuropathy Trust is committed to a better future for all sufferers of peripheral neuropathy and neuropathic pain. Through education and communication to patients and healthcare professionals, the Trust shall continue to raise awareness of these conditions and provide a lifeline to all sufferers.

Camping under the Aurora Borealis with my friend and fellow Aurora hunter, Kjetil Skogli

 

In the Land of the Northern Lights

Once I had learned to walk again I started to understand that I had taken many things in life for granted and wanted to put something back into the world, which is why I started a Neuropathy Trust charity, so I could help those affected by the same illness I suffer from. I realised how much I could have missed out on and how valuable our lives are. I had been lucky, so from then on I decided to make the most of every moment and relish the simple things that life offers. One of my lifetime ambitions was to see the Northern Lights.

So, armed with a cheap digital camera, I headed to Norway to see if I could witness one of nature’s most spectacular displays. I began shooting on a Canon EOS 10D with 17-40mm zoom and I liked everything about it. I would have probably bought myself a film camera at the time had funds permitted, but I couldn’t afford to do so. Photography really did help me to get through everything. In essence it provided a safe harbour in a very stormy sea and, without doubt, it provided a very positive distraction which, in turn, helped me to come to terms with my illness. I have always been a positive minded person, and have always tried my best to adopt a “Carpe Diem”, or seize the day mentality towards life, but photography really did help me to get through everything.

The Magical Lights

I am extremely passionate about the Aurora Borealis, so much so that I would go as far as to say that I don’t think that I could live without them. I like to describe them as the ‘Children of the Night’ – ever playful, bright, cheerful and full of boundless energy and enthusiasm. Witnessing the Northern Lights is without doubt a truly invigorating experience and, to my mind, they are something that everyone should have an opportunity to see in their lifetime.
The Aurora is never the same, there is always something new to capture and this for me is the unique challenge of photographing the Northern Lights. The varying light intensities and movement mean that results are never guaranteed but it is great fun trying to predict the movement and work with the landscape to create images that are pleasing to the eye.

Hunting the Aurora

I work hard to find locations that will complement the Aurora. Open spaces but with interesting foreground details, work well. However the difficulty in researching locations is that an aurora rarely follows a predictable path, so sometimes the best results come from being instinctive about how it weaves across the sky and just rolling with opportunity. This means I always have my Canon 5D Mk2 with a 24mm F1.4 mounted on a tripod in the car. I’ll often spot an aurora developing, stop the car, jump out and start working the location I have chosen. This can mean wading through waist deep snow, standing in freezing rivers or lying on my back staring at the sky.

Braving Cold and Wintry Nights

When I work, temperatures normally range from -15° Centigrade to -45° Centigrade. Although conditions can be inclement at times, I always ensure that I’m dressed appropriately – paying special attention to my extremities, i.e. hands, face and feet, which are particularly vulnerable. I also ensure that I wear glove liners so that when I remove my main pair of gloves, to make an adjustment to the cameral settings etc., my skin is not exposed to the elements.

The Final Product

On a single night I’ll be out for between 5 – 8 hours, usually starting around 8 pm, and will take several hundred images. The exposures are critical and can vary between 3 and 30 seconds at f1.6. I usually rate my ISO at 400 – 640 to cut down on the digital noise. Sequences work well too, as does time lapse because you can see the development of the Aurora building – peaking and then dying away.
My excitement to see what I have captured means I’ll stay up until dawn editing the pictures. I use Apple’s Aperture software and I shoot RAW as it gives me more control over the results. I don’t over produce the images as I feel you can’t really improve on nature.

Fulfilling Dreams

My goal currently is to make the Aurora more accessible to people less fortunate than me. I want to bring people to Lapland to help them fulfill one of their ambitions. I love meeting people and learning from them as they learn from me. It is what makes life work – sharing ideas and inspirations.

The Future

The future for me is bright – I am developing my photography workshops under the Aurorahunters brand.
I also hope to be able to develop an academy of photography, giving young disadvantaged children the opportunity to use photography to inspire them in life. I want to give people, who cannot travel due to disability, the chance to remotely photograph the aurora.

My other objective is to create a photographic exhibition and to take this worldwide so that people who are not as fortunate as myself get an opportunity to experience one of the most amazing spectacles of the natural world.
Although neuropathy may have hit me hard at a comparatively young age, and has left me with certain difficulties, it has also had a profound effect upon the future direction of my life. I hope that, in telling my own story, I can bring a little hope into someone else’s life and a little light also just as the ‘Children of the night’ have opened up new horizons for myself.

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