The fight against motor neurone disease

Gordon’s Fightback greets visitors with the words “I’m dying. And fast”. This is the website created by Gordon Aikman in order to raise money and awareness for Motor Neurone Disease (MND), the debilitating condition from which he suffers. As little as two years ago Gordon, who served as Vice President for Societies and Activities for EUSA in 2007, was a healthy 28 year old working as Director of Research for the Better Together campaign with a bright political future ahead. Now he is wheelchair bound, unable to feed himself unassisted. Gordon does not shy away from his imminent death, and instead has pledged the final years of his life to fundraising and assisting the forwarding of medical research.

MND attacks the body’s nervous system, resulting in a rapid loss of control over the muscles. Known in America as Amyotrophic Lateral Sclerosis, or ALS, the disease gathered much awareness in the summer of 2014 with the rise of the ice bucket challenge. Unlike other conditions which attack the body in similar ways, MND progresses at a rapid pace – half of those who develop it die within 14 months of their diagnosis. Although it is possible for some to live long lives, as, famously, Stephen Hawking has done, this is extremely unusual, and those who do survive long-term need constant medical assistance. This deterioration of muscle control means that, as the disease advances, the sufferer has to rely increasingly on others to perform the most basic of tasks, such as feeding, dressing and even going to the toilet. As there is no cure, or even method for delaying the devastating effects of the disease, this access to carers to attend to the most basic of human needs is all the medical profession has to offer to those with only months to live.

Gordon’s website sets out seven steps he thinks the Scottish and UK Governments should do in order to improve the lives of those diagnosed with MND in the future, and so far he has been instrumental in making sure that three of these have been taken. Until very recently all specialist MND nurses in Scotland were funded through charity donations. Gordon met with Nicola Sturgeon, which resulted in a pledge from her that these nurses should be funded through the NHS. Another important change these talks brought about was the doubling of the number of specialised MND nurses from seven to 14. Less time spent travelling around the country for these nurses means that now the 400 MND patients living in Scotland get the amount of time they really need with a specialist.

Arguably, the most daunting part of the deterioration process is the inevitable thought of losing the ability to speak. It is an undeniably terrifying prospect to anyone, that on top of being completely paralysed and terminally ill, you might not be able to communicate with those around you. In practical terms it is horrific to imagine not being able to call out for help if you were in pain, but the loss of communication would mean the complete loss of part of your personality. The third measure that Gordon has pushed the government to take is to ensure a statutory right of access to voice technology which will allow those who cannot speak to still have a voice.

The University of Edinburgh is a hub of research and technological development relating to MND. The very voice bank that Gordon will use in the event of his losing his voice has been assembled here and he donated body tissue to the university’s neurology labs for use in stem cell research. At the present time it is still not known what causes the condition, so tissue donations like this not only assist in discovering the cause, but crucially allow tests to be run to determine which drugs could be used to halt the progression of, or maybe even cure the condition.

As this disease has no cure all that can be offered by healthcare professionals at this time is hospice care, including end of life counselling. This is an essential part of the caring process for anyone suffering from MND, not just someone as young as Gordon who, at 30 years old, is the youngest patient his carers have ever had. Coming to terms with your own imminent death is a horrifying task, and many sufferers would struggle emotionally without this sort of support, showing again why the funding offered by the government for these services is so important. For Gordon, however, the biggest fear is the pain his death will cause those closest to him. For Gordon’s mother to watch her son die in her lifetime and for his husband Joe to lose him at such a young age is undeniably cruel, but he hopes that they will be comforted by the knowledge that he loves them and that he could not have done anything he has achieved so far without them.

MND is known to many as the disease from which Professor Stephen Hawking suffers, and was one of the focal points of The Theory of Everything, released last year, which depicts Hawking’s life from around the time of his diagnosis in 1963. What is shocking in comparing the life shown in the film with that led by Gordon is that, in the 51 years between the two diagnoses, not a single significant scientific breakthrough has been made in relation to MND. In that time the world has changed entirely, particularly in medicine. Illnesses like Aids that were in those days considered a death sentence can now be successfully fought, allowing those who develop them to continue living almost normal lives. Campaigners like Gordon believe that there must be ways to combat MND and it is for this reason that they believe there is much yet to be done. Gordon is now fighting for a doubling of the amount of money pledged to researching MND, for while he accepts it is too late for him, he wants more than anything for the next generation of people diagnosed with the disease to have a fighting chance.

Ultimately, it is this idea of making life better for those who follow him that makes Gordon’s story a positive one rather than simply a personal tragedy for Gordon and his family. Rather than focusing on the increasing number of things he could not do, Gordon chose to focus on what he could do, and that was help future generations of MND sufferers. As Gordon says in the BBC documentary which follows his life throughout 2015, The Fight of Gordon’s Life: “I’m as healthy as I’m ever going to be. Today is my healthiest day so I have to get out and enjoy life.” His words should serve as inspiration not only to those suffering from degenerative illnesses such as his own, but for all of us.

Image: lwp kommunikacio

 

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