Imagine a life where you are unable to move your arms and where lifting, reaching and stretching are no longer possible.

Imagine a life where the simple act of holding something like a mug of coffee or just trying to write your own name becomes at first difficult and then impossible.

Imagine a life where your legs and feet no longer obey your wishes, where you live with the fear of falling down and being unable to get up again without help, knowing that one day you will be confined to a wheelchair.

Imagine a life where swallowing food brings on a fear of chocking and where every breath is an effort, and getting a good night’s sleep becomes ever more difficult.

Imagine loosing the ability to talk and the frustration of trying to communicate with family and friends.

Imagine a life where your own home becomes an endless set of daily challenges, where stairways suddenly become insurmountable hurdles, where cupboards are out of reach, where getting up from a sitting position requires help.

Imagine being so paralysed that you are unable to wash, dress or feed yourself and where the living hell of being locked inside your own body has made you totally dependent on others and where lack of muscle usage brings on stiffness and painful cramp.

Imagine not being able to hold the ones you love.

Imagine having to give up work and dealing with the loss of self-esteem and financial independence, of giving up driving and the loss of personal freedom and mobility.

Imagine seeing your physical abilities stripped away one-by-one and having to give up all the hobbies and interests that made life enjoyable.

Now imagine being told that there is no cure and that your life is going to be significantly short and that you will not live to grow old with your family.

This is the world of an MND sufferer.

Scary stuff isn’t it? To borrow a line from the 1986 version of The Fly, “Be afraid, be very afraid”.

MND Awareness Week (14 June to 22 June 2008)

To raise awareness of this chronic neurological condition the MND Association here in the UK have organised a national awareness week. Over the course of the coming week a number of high profile fund raising events will take place up and down the country. These include the Walk to D’Feet MND sponsored walks and the new dunk-it! to end MND campaign. This blog entry (which I dedicate to all my fellow sufferers) is my own small contribution to raising awareness by hopefully being able to tap into the power of this social network. If I can elevate just one person’s awareness of this terrible disease then it will not have been in vain. So if anyone is reading this please spare a moment to leave a message in the guestbook. Thank you.

First, here are a few statistics and facts about the disease.

  • Motor Neurone Disease is a rapidly spreading neurodegenerative disease which attacks the nerves that control voluntary movement. As these nerves die, the muscles (through lack of electrical nerve stimulation) begin to weaken and atrophy. Life expectancy is normally dictated by the weakening of the breathing muscles.
  • Motor Neurone Disease affects around 5,000 in the UK (around 30,000 in USA). Every day in this country, three people die and another three people are diagnosed with MND
  • The cause of the disease is unknown and average life expectancy is just 2-5 years from symptom onset
  • The number of people who develop MND in the UK each year is around 2 in every 100,000 and the number who have MND is around 7 in every 100,000
  • It affects both men and women although men are slightly more at risk (about 1.5x)
  • You can get it at any time in adult life – even as young as in your early twenties but average age is 60-65
  • There is no test for MND. Diagnosis is arrived at by elimination and the experience of the Neurologist

Although these figures pale (I won’t say ‘into insignificance’ because that is one thing MND most certainly isn’t) next to cancer and heart disease, there is every indication that they will continue to rise in the coming years. And the reason for the disease becoming more prevalent is because we have an aging population brought on by the population boom shortly after World War 2. Like other countries there is a whole generation of people approaching retirement age and although MND can affect people as young as in their early twenties it is more common to be diagnosed in old age. In fact at the recent MND conference I attended, the introductory talk given by Dr Kevin Talbot, identified neurodegenerative diseases such as Alzheimer’s, Parkinson’s and MND as the major area of research for the 21st century because of the aging world population and the anticipated high level of costs and burden on society associated with caring for people suffering from such diseases. So the number of people with MND will increase as a result of a greater percentage of old people in society, not because it is becoming more common for any other reasons.

The Motor Neurone Disease Association has a vision of a World free of MND.

To achieve this goal they fund research into understanding the causes of MND, how it can be diagnosed, and how to treat it effectively before it has a chance to destroy a person’s quality of life.

Obviously we still have a long way to go on this journey but a recent example of the fruits of this investment in research can be found in a breakthrough that was announced earlier this year. Researchers at Kings College in London and those in Australia working in partnership successfully identified a protein (TDP-43) that accumulates in dying motor neurones. This important discovery which it is hoped will lead on to new cellular and animal models was part funded by the MND Association.

On the patient side the Association provides a whole range of services to ensure that people with MND receive the best standard of care and achieve the highest quality of life possible as well as providing support to the families and carers of people with MND. Those services include:

  • A nationwide support and advice service called MND Connect
  • A highly informative website rich in information and containing many useful documents which can be downloaded
  • A network of almost 100 branches and groups scattered across the country which provide local support to patients in that area and also perform various fundraising activities. My nearest one is the North Hants branch and it is these people who I keep in touch with
  • Approximately 350 Association Visitors. These are volunteers who are effectively the face of the MND Association as far as the patients are concerned. It is they who befriend and support people with MND and provide advice and guidance. It was through an AV that I had my first contact with the Association.
  • A network of Care Centres across the country which provide all the specialists (i.e. a multidisciplinary team) required to care for people with such a complex illness under one roof

On the health care professional, government and public sector side the Association is active by:

  • Campaigning nationally and locally for better care for people with MND
  • Raising awareness of the disease and working in partnership with MPs, Civil Servants, donors and fundraisers
  • Providing education and influencing local Health and Social Care Professionals via Regional Care Development Advisors

So there you have it, my contribution to help raise awareness. Tell me, do you feel more ‘aware’ now? I’m certainly very grateful that there is such a professional, dedicated and caring charity fighting on behalf of all the sufferers in this country. Twenty-five or so years ago the situation here was totally different and although a diagnosis of MND is still unfortunately a very bad one, care and symptom control has come a long way. Not only that but research has escalated to unprecedented levels giving hope that at least one day we will unlock the secrets of this enigmatic disease.

Just before I sign off here are a few things you may like to consider for which I’ve provided the links.

  • If you would like to make a donation to the MND Association then you can do so here.
  • If you would like to become a member of the MND Association you can do so here.
  • If you feel that you would like to become involved and would like to know more about voluntary work you can find out here.
  • If you would just like to know more about the Association then please click here.

On behalf of all my fellow sufferers thank you for sparing the time to read this blog entry.


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Lets go fly a kite!

Basingstoke Kite Festival 2008


With tuppence for paper and strings
You can have your own set of wings
With your feet on the ground
You’re a bird in a flight
With your fist holding tight
To the string of your kite
Oh, oh, oh!
Let’s go fly a kite
Up to the highest height!
Let’s go fly a kite and send it soaring
Up through the atmosphere
Up where the air is clear
Oh, let’s go fly a kite!

Walt Disney’s Mary Poppins (1964)

Yesterday (7th June) I spent a very enjoyable day over at the Down Grange Sports Complex where the 16th Basingstoke Kite Festival took place. It was almost a spur-of-the-moment decision as I hadn’t even been aware that it was on until a local newspaper that arrived through the letterbox shortly beforehand had a front cover feature on it. And strangely enough for all the years that it had been on I have never actually been along to see it, so curiosity finally won over and on Saturday morning with the sun beating down from a sky filled with cotton wool clouds and a gentle breeze blowing, I set off on foot armed only with a camera dangling from my neck.

The kite festival is just about one of the only events that is in walking distance of my house and over the years it has built up a reputation for itself as being a great day out for families. It has become an international event attracting kite-flying teams from France, Switzerland, Germany & Holland and typically draws large crowds.

My own kite-flying days are long gone but like most children I went through a phase where we used to fly a kite on a nearby field. In fact I can remember even making kites out of polystyrene ceiling tiles (showing my age here) and taping streamers to the tail end made from strips of newspaper. They flew surprisingly well but didn’t fare too well with crash landings. I think I got through quite a lot of ceiling tiles that summer :-).

Twenty minutes after I had set off I arrived at Down Grange where I was greeted by a green octopus, a red caterpillar and a yellow duck! 🙂 Yup, I’ve arrived at the Kite Festival! These large scale eye-catching exhibits immediately caught the imagination with their extravagant designs and bold colours. Unfortunately the unpredictable wind patterns did not appear sufficient to enable the octopus and caterpillar to gain much lift but they did look impressive hovering slightly above the ground.

Overhead and high above were some of the altitude seekers, much smaller kites but able to reach up high into the sky. Not sure how high they actually were but I knew from the article I had read that the organisers had obtained clearance from the Civil Aviation Authority for kites to be flown up to 2,000 feet. In fact I believe they have an altitude competition.

The glorious weather had brought out a large gathering but Down Grange is spacious so it never felt packed. As I walked around the field I saw happy families who had brought their own kites along to join in the fun, giggling children running along trailing micro-kites only a few inches across, and other children not so happy and frustrated at why their kites refused to leave the grass! Music and announcements from the PA system permeated the air. Off to one side a row of ice cream and food & drink vendors catered to the crowds needs whilst the smell of burgers filed the air and made me feel hungry. A couple of specialist vendors were selling all sorts of kites in the hope of capturing some impulse purchases. Bouncy castles and inflatable slides kept children amused and I watched smiling as fearless children came hurtling down steep slides only to run laughing and giggling back for more. Its funny isn’t it that when you are very young you react without any fear of the consequences but as we grow up we start to think before we act.

A central cordoned off arena was the main focal point for the aerobatic displays, some of which bore an uncanny resemblance to the sort of thing you would expect from an air show. For example there was a team of blue kites that flew in tight formation and then exploded in all directions like a starburst – very impressive and reminiscent of something that the Red Arrows might put on. There were equally impressive stunt displays and a Rokkaku fighter competition in which the event’s various sponsors tried to knock each others kites out of the sky.

The kites themselves have come a long way from the elongated diamond or box shapes that I grew up with and much like hot air balloons they appear to come in all shapes and sizes quite often in configurations that appear to defy the laws of aerodynamics. Animals and insects were popular subjects at the show. There were kites that resembled butterflies, beetles, alligators, bats and a very impressive and colourful manta ray which was also one of the larger exhibits. There were kites in truly strange shapes such as a hoop with multi-coloured ribbons attached and another that was literally just a deep-walled ring. And yet amazingly they flew.

Photographically the day was a bit of a disaster. My weakening shoulders and unpredictable arms meant that trying to just lift a camera to my eye and hold it there for long enough to compose a shot was extremely difficult, and on several occasions my arms just collapsed and the camera fell away – although fortunately not far as I was wearing a camera strap. So because I was only able to hold the camera for a few brief moments the pictures really were ‘grab shots’. I think my days of hand-held photography are drawing to a close and I’ll have to start looking at camera supports but I’ve been reluctant to do so because of the extra bulk and weight of carrying it around all day as well as limiting my ability to respond quickly to a situation which changes rapidly like this kite festival for instance.

The other problem is I can no longer hold a long heavy lens which to be honest was what I really needed today. And constantly bending back (as opposed to raising my arms up high) to photograph objects in the sky left me with lower spine ache for the rest of the day. On the plus side the image stabilisation system built into my new camera’s standard short-range zoom lens is proving to be very useful and I’m not sure if I could take hand-held pictures now without it. The 12 mega-pixel sensor has allowed me in some small way to make up for the lack of a longer lens by providing sufficient pixels to allow for selective cropping and thus give me that extra ‘reach’ I need. It’s not the ideal solution but it will have to do for now. I believe that Canon do make a very compact and light weight telephoto zoom lens for this camera (with image stabilisation) so Ill take a look at that soon.

Apart from the physical and technical difficulties experienced taking pictures I was also battling with the sheer frustration of loosing so many shots. The kite festival was a wonderful opportunity to capture so many good pictures and yet so often I would loose them because I just couldn’t react quickly enough as I fumbled to lift the camera or my arms were still ‘recharging’ from a previous shot. All I could do was watch with envy as I saw other keen photographers walk by with their super-zooms and point them skywards with such apparent ease. I saw some wonderful acrobatic displays of multiple kite formations but just couldn’t find the energy to hold the camera and track the subjects long enough to get the shots I wanted. It is so frustrating when you have good equipment, great weather, an interesting subject and still not be able to make the most of the situation because your own body is letting you down. But ultimately that’s life and all any of us can do is to make the best of what we have. At least I can take some consolation in the fact that my current level of disability is not so great that it prevented me from going to the festival or taking any photos. My legs still seem sound too because I never noticed any tiredness throughout the day and I must have covered a few miles.

But photography aside it was still an enjoyable day and I came away feeling quite happy – and a little sunburnt. The whole experience was like returning to the care-free days of childhood; a low tech pleasure for simpler times. And that kind of appeals to me in this age of ever-increasing complexity where almost everything we buy has built in-obsolescence. I must admit that if it wasn’t for my disability I would have been quite tempted to buy a big colourful kite myself. Maybe get a whole group of us together and have the kites painted with motor neurones emblazoned on their wings. Then next year put on a display and fly them in the world famous ‘missing muscle’ formation! 😀

I’ll upload a small gallery of companion pictures soon. Just need to run them through Photoshop first to clean them up and make them half presentable.


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