June has been national Motor Neurone Disease awareness month in the UK, raising the profile and understanding of this debilitating and life-changing condition.
MND is a progressive disease that attacks the motor neurons, or nerves, in the brain and spinal cord. It means that messages from the brain are gradually prevented from reaching muscles, which leads to weakness and muscle wasting. MND can affect how you walk, talk, eat, drink and even breathe, but not all the symptoms will necessarily happen to everyone with the disease, or develop at the same time or in any particular order.
Although there is currently no cure for MND, its symptoms can be managed to help people with the disease enjoy the best possible quality of life. There are several types of MND and the disease does not usually affect the senses, such as sight, sound, touch, smell and taste.
Around 35% of people diagnosed with MND experience some mild cognitive changes, which can affect mental processes such as planning, decision-making and constructing speech. A further 15% of sufferers show signs of a form of dementia, with more pronounced behavioural change, but for most people there is little or no mental impairment.
One of the best known people with a form of MND is Professor Stephen Hawking, whose renowned intellect remains undiminished despite his physical deterioration. Many people diagnosed with MND continue to excel in their careers and professional lives through the use of living aids such as specialised wheelchairs and speech-generating computer programmes.
It is perhaps one of the most brutal aspects of the disease that sufferers can find themselves as mentally agile as ever, but locked in a failing body, unable to move, talk, swallow and eventually even to breathe. However, advances in technology have helped people living with MND overcome all these obstacles, and continue to do so.
MND can affect any adult at any age, but most people diagnosed with the disease are over 40, with the highest incidence between the ages of 50 and 70. It affects up to 5,000 adults in the UK at any one time, with around six people per day diagnosed with MND. Tragically, it also kills around six people per day – just under 2,200 people per year – in the UK. A third of people diagnosed with the disease will die within a year, and more than half within two years of their diagnosis.
But some people will continue to enjoy much longer lives, depending on the type of MND they have and how it progresses and is managed. Stephen Hawking was diagnosed at 21 and not expected to live past 25, but he is now 74.
MND can also be very difficult to diagnose, particularly in its initial stages. Early symptoms can be quite slight, such as clumsiness, mild weakness or slightly slurred speech, all of which can be attributed to other reasons. As the disease affects different people in different ways, there is no definitive set of symptoms and people often delay seeing a GP if symptoms are mild and do not have much impact on their everyday lives.
Research into the causes of MND is ongoing around the world, leading to a better understanding of the disease and its symptoms and to new treatments. Ultimately the hope is to find a cure.
In the UK the Motor Neurone Disease Association (MNDA) is the national charity focused on MND care, research and campaigning. With more than 9,000 members and 7,000 active volunteers, it is an invaluable source of information and support for people diagnosed with MND and living with the disease. It also campaigns to raise awareness and improve services, and raises funding to support research.
For more about the MNDA, including its 2016 "Shortened Stories" awareness campaign, visit its website here. You can also call its national helpline on 0808 802 6262.
One of the "Shortened Stories" is a video about Robert's life with MND. A version of the video is introduced by actor Eddie Redmayne, who played Stephen Hawking in the inspirational 2014 film "The Theory of Everything", and is now a patron of the MNDA. To watch it, click here.