Show your support for
Motor Neurone Disease
Motor Neurone Disease Awareness Month takes place each June and its purpose is to help raise awareness of this disease.
The event is organised by the Motor Neurone Disease Association. The group was formed in 1979 by volunteers who wanted to offer support and advice to those affected by the illness.
Now with over 3000 volunteers the association is stronger than ever and here to help anyone affected by the condition. And with Eddie Reymayne’s success in winning the Best Actor Oscar for his portrayal of Professor Stephen Hawking in The Theory of Everything, which he dedicated to “all of the people around the world battling motor neurone disease” it can only help to raise awareness.
Motor Neurone Disease is a progressive disease which attacks motor neurones in the body. Eventually this leads to wasting of the muscles, which makes it harder and harder to move limbs and causes difficulty with swallowing and breathing.
There are lots of ways to get involved during the month to help raise money to support people suffering from this awful condition. You can simply donate, become a member of the group to show your support, or you can take part in fundraising events. From sponsored runs at home, to trekking the Great Wall of China, there are lots of ways to take part!
Nick Palmer lives with motor neurone disease (MND). His personal accounts of daily life whilst wrestling with the effects of the advance of MND are inspirational, and have captured the hearts of Platform505’s readers. Here, in MND Awareness Month, he gets down to the nitty-gritty: the facts about MND.
“Since being diagnosed with MND in 2006, with the help of family and friends, I have tried to get on with my life without being absorbed with MND on a daily basis. I have had little desire to research into the disease and find out what lies ahead. Yet, since June 2013 is ‘MND Awareness Month’, I thought it an opportune time to research into some facts about my condition – the following is a brief overview of informed medical opinion about MND:
- Motor neurone disease (MND) is the name given to a group of diseases which are caused by the death of motor neurones – the nerve cells through which the brain and spinal cord send instructions in the form of electrical impulses to the muscles. In some countries MND is known as amyotrophic lateral sclerosis (ALS), Lou Gehrig’s or Charcot’s disease.
- In MND the motor neurone cells die, so the nervous system can no longer initiate and control muscle movement. When muscles no longer receive the electrical messages required to function, they waste away. MND commonly affects the muscles controlling arm and hand function, walking, talking, eating and breathing.
- MND is a devastating, fatal condition. Patients in the later stages of the disease may be incapable of moving and speaking and die from weakness and paralysis of their breathing muscles. Many doctors regard this condition as the worst disease in medicine.
- Over 5000 people in the United Kingdom suffer from MND and 3-5 people in the UK die every day from this condition. Life expectancy from diagnosis is just two to five years, and around half of those die within 14 months.
- At present there is no effective treatment for MND. Several therapies can ease symptoms which occur during the course of the disease. Only one drug, Riluzole, has been shown to extend the survival of people with MND and this effect is only modest. Ever since Charcot first described the condition in 1869, doctors and scientists have tried, without success, to find a cure for MND.
- MND is regarded as an ‘orphan’ disease so it has been poorly supported and under-funded. Furthermore because of the relatively low numbers of patients, few pharmaceutical companies are interested in developing therapies for MND. One possible area for hope is for academic institutions to play a major role in developing new treatments
This information no longer comes as a surprise to me, and despite the fact that I no longer have the use of my arms or legs, the review brings home to me that I’m one of the more fortunate MND sufferers; some 11 years after first symptoms, I feel the same person that I always was – to date my core body thankfully seems to be ‘holding-up’ well.
So it is not all bad – despite my complete lack of mobility, and therefore loss of independence, with a clear mind and with my sight, hearing and sense of smell all intact, with the support of family and friends, and the fact that I can still communicate, means that there is still much to live for, despite the very negative prognosis.
From my own experience, other surprising facts surrounding the condition are as follows: formal diagnosis is made by ruling out other more common conditions; while muscular activity progressively shuts down, brain activity and thought processes remain mainly unaffected; the speed of progression remains constant: ie, if it starts slowly it will not subsequently speed up (which gives me some personal comfort).
Observations from my consultant indicate that the condition does not generally occur in inactive people, more active people appear more at risk! It is generally acknowledged that ‘a couch potato’ style of living is unhealthy, leading to say heart disease, or some cancers – I therefore find it particularly hard to accept that in exceptional circumstances, it is possible that physical activity can, in combination with unknown factors, combine to form a possible catalyst behind the onset of MND.
While I have received excellent support from specialist departments in hospitals, occupational therapists and the local hospice, it has nonetheless been hard to comprehend that from the outset, the medical message was clear; I would not recover and my condition would only deteriorate.
I refuse to accept that there is no hope for the future. By increasing the awareness of MND, and publicising the excellent work of dedicated health professionals, not least those working within the Sheffield Institute of Translational Neuroscience (SITraN), and the initiatives part funded by the MND Association, a miracle cure can be found, one day!”
The Awareness month in June on the MNDA website is focused around a film called I Am Breathing. I Am Breathing tells the remarkable true story of Neil Platt, a young father who found out he was dying from motor neurone disease just months after the birth of his son Oscar. Neil wanted to raise awareness of MND and this was the focus of his last few months. The motor neurone disease association want to make Neil’s vision come true. And you can do this by hosting your own screening of I Am Breathing on MND Global Awareness Day Friday 21 June or after. To read further information about this, click here. Below is a trailer about his film.