MND awareness week 18-26th June

For the want of an arm

I’ve been thinking recently about how big an impact on your life the loss of a single limb can have. So much would change if I only had the use of my right arm. Here are 20 things that I could do for myself once again:

Scratch myself

Brush my own hair

Give myself a shave

Brush my own teeth

Wash my own face

Put my glasses on

Turn the pages of a book

Feed myself

Have a drink (without using a straw)

Pick up and reposition things

Shake hands with people

Point at things

Wave at people

Write my name

Operate a TV remote

Operate a computer keyboard

Pick up and operate the phone

Smooth out creases in fabrics

Operate an electric wheelchair

Work a camera

And that’s just one limb!

Given enough time MND will rob you of the use of all four limbs. And your neck. And your speech. And your swallow. And ultimately your breathing.

It’s MND awareness week here in Britain. Up and down the country people from the MND Association will be collecting for much-needed research and to help those struggling to live with it. On behalf of all those like myself please can I ask that you give generously for this very worthwhile cause. Thank you very much.

Mark

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MND Awareness Week 19th – 27th June 2010

We’ve arrived at that time of year again when hopefully MND will have a slightly higher profile in the public eye than it normally does. In my first two years as a blogger I’ve tried in my own way to contribute to the week’s events by posting an article on MND in general terms rather than specific to me. This year I thought it would be a good idea if I could reach out to a different audience, perhaps one that wouldn’t normally visit this blog or indeed may not even be aware of it. So a few months ago I decided that I would write an article and approach my local newspaper to see if they would be interested in publishing it during the awareness week. But then as I began to draft out the article I started to think about what I really wanted to achieve. This was supposed to be a national awareness week so why limit myself to my hometown? Why indeed, especially as time is so precious to me and I may not have many more opportunities to do this. So a few weeks ago with the article finished I began to submit it to the various national newspapers that have an online presence such as The Times, The Daily Mail, The Telegraph, and The Guardian. Unfortunately most of them declined even to acknowledge receipt of the article. Most promising however was a response from someone at the Guardian who commented that it was ‘a very nicely written piece and really gives a feel of the horror of living with Motor Neurone Disease’. The last I heard was that she was going to pass it on to her colleagues on G2 and look at having it published on the website. I’ve not heard anything back yet but if it should appear in any of the newspapers, supplements or news websites over the coming week perhaps you would be kind enough to let me know. Fingers crossed! Anyway rather than see all that work go to waste I have included the article here in its entirety as this year’s awareness post.

* * *

In early November 2007 on a cold dark evening I walked out of my local hospital having just been given the worst possible news anyone could expect. I had been given a diagnosis of something called Motor Neurone Disease and had been told that my life was going to be significantly shorter and that there was no cure or treatment for what I had. I drove home alone that evening with tears running down my cheeks, more at the thought I was going to die soon, rather than any comprehension of what Motor Neurone Disease was, because at that time all I had really been told was that the nerves that send signals to the muscles were diseased and dying.

But that was all more than 2 1/2 years ago and in that time I have grown to understand through my own experiences what this disease is capable of and what it means to live with it. Yes, I say ‘live with’ as opposed to ‘dying from’ because although it is true that getting a diagnosis of MND is effectively a death sentence, I refuse to waste the precious time left to me. I realised at a very early stage that I could either sit around feeling sorry for myself and grieve for a future I would never see – and then realise when it was truly the end that I had squandered the life that was left to me – or I could try to make the most of each day and to try and find ways of at least engaging the mind even though I knew that my body would soon betray me. I chose the latter path.

Three months after I was diagnosed I set up a blog initially to keep family and close friends informed of my progress but as time went by the focus began to shift as I found I had a desire to share my experiences with a much wider audience and to raise awareness of this devastating disease. Looking back I realise now how the blog has become a kind of surrogate for work and how it helps keep my mind active. So this year for MND awareness week (19th to 27th of June) I’ve put together some words that try to paint a picture of what it truly means to have a neurological disease that cannot be slowed down, arrested or reversed.

MND is an insidious and terribly cruel disease. It gradually creeps up on you and slowly but systematically dismantles your life, all the while disengaging you from the physical world so that in the end you become nothing more than a passive observer rather than a physical contributor. It is a disease that effectively forces you to live your remaining life in reverse as you gradually lose the ability to perform the wide variety of physical tasks that you learn as you travel through life.

And that is how it was with me. At first the early symptoms seemed trivial, just a feeling of tiredness in my arms when performing physical tasks such as cleaning windows and painting fences, which I just put down to middle age. But as the months rolled by the symptoms grew to a point where I could no longer ignore them and after a few months of tests I knew what I faced. Since that time I’ve undergone a continual decline in my physical abilities. I lost the ability to drive a car and go to work for a living five months after being diagnosed. This loss signified the start of how my world, and my options, would gradually contract as the disease spread. Without the car, travel had to be planned in advance and was subject to the schedules of public transport. The loss of work brought with it feelings of social isolation, lack of purpose, concerns over financial independence, and self-esteem. I had worked all my life, so to find myself suddenly being removed from the workplace was hard to adjust to.

MND is strange in that everyone’s experience of it will be different. It can start in different parts of the body, spread in different directions and at different speeds. For me it was to be a top-down experience so as the disease spread down my shoulders and into my arms and hands I began to experience an increasing level of difficulty in performing daily tasks as the distance I was able to lift my arms decreased. Suddenly my arms started to feel ‘heavy’. Brushing my hair, cleaning my teeth, reaching to get something from a shelf, all these and many more were early problems I faced. The world around me had started to feel ‘out of reach’.

At first I tried to make use of various gadgets and adaptations that would try to maintain the illusion of independence for a little while longer, but the disease would continually move the goalposts and I got very little use out of any of them. As the months went by it started to feel like all my physical abilities were being stripped away like the layers of an onion as I gradually said goodbye to one skill after another. Skills I had learned as a child such as buttoning shirts, tying shoelaces, and even writing my own name became a distant memory as I gradually lost the dexterity in my fingers. Objects began to feel heavier as my strength faded. I lost the ability to prepare food for myself or lift a drink to my lips less than a year after I was diagnosed. I started to receive home care. My dependence on others had begun. A few months later I could no longer dress or even wash myself.

By early 2009 the disease had started to make its presence felt in my legs as month by month the distance I was able to walk from my house decreased until it got to the point where all I could do was walk around indoors. For anything else I had to rely on a wheelchair. For someone who used to enjoy walking and cycling so much it was a crushing blow because it felt like the world around me was contracting along with my personal freedom.

These days my legs can bear my weight for only a few minutes so for most of the day I’m confined to sitting in a chair. Falls can be painful and dangerous. I once fell backwards at the top of the stairs cutting my head open and lay on a blood soaked carpet for three hours unable to do nothing more than twitch like a stranded fish on the beach until somebody found me. I had never in all my life felt so utterly helpless. I spent that night in A&E.

It would be bad enough if MND just attacked the limbs but unfortunately it goes way beyond this. Given sufficient time it will eventually work its way through the entire voluntary muscular system although not everybody experiences every symptom. Throughout the 3+ years I’ve had the disease I’ve noticed a steady decline in my breathing ability to the point where I am now taking a breath after virtually speaking every sentence. At times it can feel like my chest is being held tight preventing me from taking a deep breath. Fortunately I can still breathe unaided but there may come a time when I will have to consider some form of non-invasive ventilation. Looked at this way, MND is a slow form of suffocation. My swallowing reflex has recently started to slow down so I am now having to take more care in what I eat and how it is prepared in case it becomes lodged in my throat and blocks my airways. My neck muscles have also grown very weak so that now I can barely support the weight of my own head. This causes problems when trying to walk as a heavy head flopping around is enough to upset my balance and threaten to topple me over.

Ultimately it is a disease that transforms you into someone with the needs of an adult sized baby, totally dependent on the kindness and care of others. In fact it is worse than being a baby because your mind remains as sharp as it ever was so you are fully aware of being gradually entombed in a body that no longer responds to your wishes. It is the ultimate prison with no chance of escape – ever.

Fortunately we live in an age where technology has made the life of a disabled person more bearable. These days I’d be lost without my computer and access to the Internet. I’m also extremely lucky that the disease has not affected my speech as it can do with some types of MND. I depend on it not only for social interaction and expressing my wishes and desires, but also for controlling my computer through speech recognition software.

In the time that I have had MND I’ve had to constantly figure out new ways of doing things, learn to live life at a slower pace and with severe limitations, try to anticipate and plan for my future needs, and give up some of my hobbies and interests that made life fulfilling, rich and rewarding. But despite everything that MND does to your body, despite everything that it takes away, it leaves your mind intact. Inside I’m still the same as I always was. It doesn’t destroy your capacity to love, to feel sorrow, to laugh or to appreciate beauty in all its many forms. In short it doesn’t destroy your humanity.

The really strange thing though is that despite everything that is happening to me I have yet to experience any form of depression. I’m not under any false illusions that a cure will come along right at the last moment and save me but I do believe that someday we’ll find one. I tend to think of MND as a huge puzzle with all the pieces facedown and scattered across the table. Through the dedication of men and women across the globe we are gradually revealing what some of those pieces are. It is still far too early to see how they all fit together and what the big picture is but I believe there will come a day when we will. I live with the hope that one day we’ll be able to consign MND to the history books.

* * *

MND Awareness Week (19th – 27th June)

To raise awareness of this chronic neurological condition the MND Association here in the UK have organised a national awareness week. This blog entry (which I dedicate to all my fellow sufferers) is my own small contribution to raising awareness. Regular visitors to the blog will of course already have a good idea of how the disease has impacted my own life so far. Those new to the site might like to dip into some of the resources I’ve posted links to.

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 which leads to paralysis. 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 five people die from MND
  • The cause of the disease is unknown and average life expectancy is just 2-5 years from symptom onset. Around half will die within 14 months of diagnosis.
  • 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
  • Only about 10% of cases are familial (inherited) whilst the remaining 90% are sporadic (i.e. appears for no apparent reason).
  • There is no test for MND. Diagnosis is arrived at by elimination and the experience of the Neurologist
  • The number of people with MND is set to increase due to an aging population. This will place a tremendous burden on health care services.

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.

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.

Thank you for sparing the time to read this post.

Mark

Parts of this article have been taken or adapted from previous years MND Awareness blog entries which you can read here and here.

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Thursday, June 10th 2010

Mark at the ARK!

I’ve had an interesting day today, one that has given me a further opportunity at raising awareness of MND. The roots of all this go way back to last year when Rachel, my Social Care Manager and part of my local hospice team, approached me to see if I would be willing to participate in an MND study day that they intended to run for healthcare professionals. I readily agreed as I have always been keen to help raise awareness of this disease, although normally of course my efforts are channelled through this blog which in itself consumes a lot of my time. For one reason or another it never took place last year and I was beginning to wonder if it ever would, but a few months ago I got the word that it was going to take place in June. The original idea they had for my part was to record me talking about MND but then at a late stage in the organisation Rachel decided that it would be nice if I could actually come along and talk in person. So that is what I did!

The hospice had arranged a modified community transport minibus to come and pick me up at 9 AM which meant poor Ann had to get up extra early to be around my house by 7:15 AM so that I could be washed, dressed and fed before it arrived. Debbie arrived an hour later to help Ann get me downstairs and into the wheelchair, and by the time we were ready to leave Alli had joined my little travel party.

The MND study day was held at the ARK Conference Centre, adjacent to Basingstoke and North Hampshire hospital. The day’s programme ran from 9:20 AM through to 4:30 PM with the day’s events kicking off with a talk by the MNDA Regional Care Development Advisor which gave insights into MND and the role of the MND Association. As part of her talk there was a video focusing on the lives of four different people who have MND. Sadly the end credits revealed that three of these people had lost the fight. This was followed by a talk on challenging symptoms by a consultant in palliative medicine for Sue Ryder Care. After a mid-morning coffee break one of the doctors and consultants in palliative medicine from our own hospice gave a talk on cognitive challenges in MND which suggested that it was far more common than first thought. Before wrapping up for lunch we split up into three large groups for a series of patient and carer perspective workshops. And so for the next hour I was the guest speaker being interviewed and talking about my experiences of living with MND. It was a bit of a struggle talking for so long and I found myself frequently pausing to take a breath before continuing. But apart from that I found the whole experience an enjoyable and rewarding one.

Straight after lunch and for the next hour there were small group discussions and a talk on dealing with difficult decisions and advanced care planning. The final talk of the day, which followed a coffee break, was presented by a clinical psychologist who talked at length about compassion fatigue and the risks for the healthcare professionals.

It had been an interesting day and it was encouraging to see that it had been fully subscribed with over 80 healthcare professionals ranging from GPs and occupational therapists to physiotherapists and speech and language therapists. It felt good to be a part of something that would help educate people dealing with MND. Afterwards Rachel informed me that there had been some very positive feedback on my workshop, so that was nice to hear. For me personally it was also a wonderful opportunity to actually get out of the house again (for only the third time this year).

I would like to say a big thank you to Ann, Debbie and Alli for taking such good care of me today.

Before I sign off just have to mention a short four minute video that was shown at the close of the day’s events. There was no introduction or explanation as to why they were showing it which was strange because it had nothing to do with MND. In fact it was the complete opposite of what it means to have MND… and that of course for me was the message. This lovely feel-good, inspirational and heart-warming video clip had me both smiling throughout and feeling envious that I couldn’t participate. I’m not going to spoil it and say too much but if you want to see something that can bring a smile to your face through the simple actions of this one-man and how he’s brought people of different countries and cultures together then take a look at his video which you can view below. Enjoy!

Mark

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MND Awareness Week 20th – 28th June 2009

What does it mean to have Motor Neurone Disease?

It means…

  • Seeing your life stripped away like the layers of an onion as you are forced to live the remainder of your life in reverse, gradually losing the abilities learnt as a child such as tying shoelaces, buttoning shirts, brushing your teeth or even writing your own name.
  • Giving up work and the loss of self-esteem and the financial independence it brings.
  • Saying goodbye to driving a car, riding a motorcycle or even a bicycle.
  • Giving up sports activities or even simpler pleasures like going for a walk to get some fresh air or enjoying the thrill of cycling down country lanes.
  • Learning to live a life of dwindling physical abilities where even the most basic of life’s tasks such as personal care and dressing are at first difficult and then impossible.
  • Seeing all the hobbies and interests that made life interesting, fulfilling, rich and rewarding slip away.
  • Learning to adapt to a world that isn’t for the most part geared up for disability, and where familiar objects become gradually more difficult to interact with, so that making a phone call for example, getting a DVD out of its case to watch, or turning the pages of a book present insurmountable problems.
  • Seeing your home gradually fill up with gadgets to make life easier and eventually having to adapt the house itself…or be forced to move.
  • Experiencing the terror of gradually becoming locked inside your own body as month by month the muscles weaken and paralyse.
  • Feeling the frustration of not being able to hold the ones you love.
  • Living with the fear of falling over and being trapped helpless on the floor, or worse, suffering injury.
  • Losing the power of speech and the ability to express your own wishes, and the feeling of social isolation it brings.
  • Losing the ability to eat and drink, one of life’s basic pleasures, and being fed by plastic tube directly into the stomach.
  • Struggling for each breath and sleeping with a ventilator.
  • Dealing with choking fits that leave you utterly exhausted, and the sheer agony of painful muscle cramps.
  • Struggling to find ways of getting comfortable when the body no longer responds, and dealing with the frustration of itches you can no longer scratch.
  • Losing your mobility and personal freedom and living out the remainder of your life in a wheelchair.
  • Seeing your life change from one of independence to one of total dependence as you are forced to accept help from family, friends or professional carers.
  • Feeling the crushing sadness of knowing that you’ll die long before your time and not grow old with family or be there for key events.
  • Living with the knowledge that your remaining life will be significantly short and knowing that there is no known cure.

MND Awareness Week (20th – 28th June)

To raise awareness of this chronic neurological condition the MND Association here in the UK have organised a national awareness week. This blog entry (which I dedicate to all my fellow sufferers) is my own small contribution to raising awareness. Regular visitors to the blog will of course already have a good idea of how the disease has impacted my own life so far. Those new to the site might like to dip into some of the resources I’ve posted links to.

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 which leads to paralysis. 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 five people die from MND
  • The cause of the disease is unknown and average life expectancy is just 2-5 years from symptom onset. Around half will die within 14 months of diagnosis.
  • 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
  • Only about 10% of cases are familial (inherited) whilst the remaining 90% are sporadic (i.e. appears for no apparent reason).
  • There is no test for MND. Diagnosis is arrived at by elimination and the experience of the Neurologist
  • The number of people with MND is set to increase due to an aging population. This will place a tremendous burden on health care services.

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.

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.

Thank you for sparing the time to read this post.

Mark

Parts of this article have been taken or adapted from last year’s MND Awareness blog entry which you can read here.

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Imagine

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.

Mark

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