The word most frequently attached to Motor Neurone Disease is 'cruel'. Another is 'heart-breaking'.
There is no cure and those who get it often find that by the time they are diagnosed, their life expectancy in years can be counted on the fingers of one hand. Meanwhile the progress of their illness can be devastating for both the patient and their loved ones.
MND is a terminal illness, a progressive neurological condition which attacks the muscles by interrupting signals which should reach them from the brain. Over time this means they grow weaker and stop working altogether.
As the disease takes its course this can mean sufferers lose the use of limbs – unexplained falls, or clumsiness are among the reasons people often seek medical advice, leading to diagnosis. Eventually those affected will end up using a wheelchair and unable to care for or feed themselves.
But as it worsens, patients will become unable to speak and ultimately the muscles controlling the lungs are affected too, which is the most common cause of death.
The cause of the disease is not known. For most people genetics is not a major factor but it is thought that a combination of genetic, environmental and lifestyle risk factors may contribute to someone developing MND.
As a result of the limited knowledge of how MND starts and progresses, there is little on offer in the way of treatment, so the best patients can hope for is a suitable package of care and support, treatment to manage some of their symptoms and ultimately palliative care.
While prominent cases such as football's Fernando Ricksen, scientist Stephen Hawking – whose longevity defied all expectations of the disease – and rugby's Doddie Weir have brought more public attention to the disease, research into a cure remains at a low level.
Only around 5,000 adults in the UK at any one time will affected by MND, making it relatively uncommon. This means pharmaceutical companies have not prioritised it and it also means doctors, nurses and social care workers may not see many cases.
Doddie Weir, who was diagnosed three years ago has devoted the time since then to campaigning to raise awareness and to fund-raise to research the condition and look for a cure. At last month's book festival the Scotland legend was scathing about the treatment of sufferers by the NHS, which he described as 'cut-throat' and said patients were being left to turn to the internet to work out how best to help themselves.
Why are you making commenting on The Herald only available to subscribers?
It should have been a safe space for informed debate, somewhere for readers to discuss issues around the biggest stories of the day, but all too often the below the line comments on most websites have become bogged down by off-topic discussions and abuse.
heraldscotland.com is tackling this problem by allowing only subscribers to comment.
We are doing this to improve the experience for our loyal readers and we believe it will reduce the ability of trolls and troublemakers, who occasionally find their way onto our site, to abuse our journalists and readers. We also hope it will help the comments section fulfil its promise as a part of Scotland's conversation with itself.
We are lucky at The Herald. We are read by an informed, educated readership who can add their knowledge and insights to our stories.
That is invaluable.
We are making the subscriber-only change to support our valued readers, who tell us they don't want the site cluttered up with irrelevant comments, untruths and abuse.
In the past, the journalist’s job was to collect and distribute information to the audience. Technology means that readers can shape a discussion. We look forward to hearing from you on heraldscotland.com
Comments & Moderation
Readers’ comments: You are personally liable for the content of any comments you upload to this website, so please act responsibly. We do not pre-moderate or monitor readers’ comments appearing on our websites, but we do post-moderate in response to complaints we receive or otherwise when a potential problem comes to our attention. You can make a complaint by using the ‘report this post’ link . We may then apply our discretion under the user terms to amend or delete comments.
Post moderation is undertaken full-time 9am-6pm on weekdays, and on a part-time basis outwith those hours.
Read the rules here