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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