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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