Motor Neurone Disease (MND) Awareness Month – ‘Shortened Stories’ – June 2016
To: All Branches
About Motor Neurone Disease MND
Motor neurone disease (MND) is a progressive disease that attacks the motor neurones, or nerves, in the brain and spinal cord. This means messages gradually stop reaching muscles, which leads to weakness and wasting.
MND can affect how a person walks, talks, eats, drinks and breathes. However, not all symptoms necessarily happen to everyone and it is unlikely they will all develop at the same time, or in any specific order.
Although there is currently no cure for MND, symptoms can be managed to help sufferers achieve the best possible quality of life.
This LTB is aimed at supporting MND Awareness month by providing background information about MND that will help Branches and Health and Safety Reps in particular to access information if they have a member or members with MND or symptoms which may possibly be MND.
Throughout MND Awareness Month in June 2016 the MND Association will be running a major campaign focusing on a number of powerful Shortened Stories – real people whose lives have been, or will be, cut short by MND, whose hopes and dreams will die because of their diagnosis. You can view these incredible shortened stories at http://www.shortenedstories.org/.
You may recall that summer 2014 was an important one for the MND community. You Ice Bucket Challenge sweeping the internet raised new awareness of motor neurone disease and over £7million in donations. During the 2015 MND national awareness month the MND Association wanted to acknowledge the incredible achievements of the previous year and also remind people that MND still continues to ravage lives at devastating speed.
Brief guide to MND
The French Neurologist Jean-Martin Charcot first described Motor Neurone Disease (MND) in 1874. The term Motor Neurone Disease, describes a group of related diseases, affecting the motor nerves or neurones in the brain and spinal cord, which pass messages to the muscles telling them what to do.
What Does MND Affect?
MND is a progressive neurodegenerative disease that attacks the upper and lower motor neurones.
Degeneration of the motor neurones leads to weakness and wasting of muscles, causing increasing loss of mobility in the limbs, and difficulties with speech, swallowing and breathing.
The muscles first affected tend to be those in the hands, feet and mouth, dependent on which type of the disease an individual is diagnosed with.
MND does not usually affect the senses or the bladder and bowel. Some people may experience changes in thinking and behaviour, often referred to as cognitive impairment, but only a very few will experience severe cognitive change.
The effects of MND can vary enormously from person to person, from the presenting symptoms, and the rate and pattern of the disease progression, to the length of survival time after diagnosis.
What are the symptoms?
Not everyone will experience all of the following symptoms, or in any particular order. An individual may even have symptoms that are not mentioned here, as the disease can affect everyone differently, or an individual could have another unrelated problem which also requires medical attention, so people are advised to speak to their GP about any concerns. Common symptoms are:-
• Muscle weakness
• Twitching (and fasciculations – rippling sensations under the skin)
• Muscle tightness and/or cramping
• Breathing difficulties
• Swallowing problems
• Saliva and mucus problems (can gather in the mouth and throat)
• Speech and communication difficulties
• Fatigue
• Pain
• Emotional liability (involuntary/inappropriate laughing and/or crying, difficult to control and distressing)
• Emotional reactions (anxiety, fear, anger, sadness, depression and disbelief)
• Cognitive changes (difficulty thinking, concentrating, planning things and interacting with others)
See Further information in the attached MNDA Leaflets.
Diagnosis
Motor Neurone Disease can be extremely difficult to diagnose for several reasons:
• It is a comparatively ‘rare’ disease
• The early symptoms can be quite slight, such as clumsiness, mild weakness or slightly slurred speech, all of which can be attributed to other reasons. It can be some time before someone feels it necessary to see a GP
• The disease affects each individual in a different way, so there is no definitive set of symptoms.
There is no specific way of testing for MND, which means diagnosis requires the elimination of other potential conditions. When someone first realises that something is wrong they usually go and see their GP (family doctor) for advice. The GP might refer them to see a neurologist, a specialist in conditions that affect the brain and nerves. The neurologist will examine and question the person on how the symptoms are affecting their daily life. There is no single test that proves someone has the disease, so specialists will do lots of different tests to make sure it isn’t something else before they tell someone they have MND.
Types of MND
There are four main types of MND, each affecting people in different ways. Although someone might be diagnosed with a particular type, one type can turn into another over time. This means that sometimes a person might not know what kind of MND they have.
• Amyotrophic lateral sclerosis (ALS) is the most common form of MND. People who have this form of the disease often start by having weakness and wasting in their arms and legs. Someone may first notice they are tripping up when walking or that they drop things.
• Progressive bulbar palsy (PBP) affects about a quarter of people diagnosed with MND. People with PBP may find that their speech starts to slur or they may have difficulty swallowing.
• Progressive muscular atrophy (PMA) affects only a small proportion of people. To start with people may notice weakness or clumsiness in their hands.
• Primary lateral sclerosis (PLS) is a rare form of MND causing mainly weakness in the lower limbs, although some people may experience clumsiness in the hands or speech problems. Many people with PLS live as long as they would have if they didn’t have the disease.
Is there a cure for MND?
Unfortunately, there is no cure for MND at the moment. People who have MND do not get better and people do die from MND.
Who is at risk of developing MND?
In recent years there is evidence to suggest the incidence of Motor Neurone Disease (MND) is increasing. This could possibly be due to more accurate diagnostic testing. Also, as people are generally living for longer, the incidence of a disease more common in older people will continue to increase.
MND Statistics
It is difficult to be exact, but statistics for Motor Neurone Disease tell us that:
• A person’s lifetime risk of developing MND is up to 1 in 300
• Six people per day are diagnosed with MND in the UK
• It affects up to 5,000 adults in the UK at any one time
• Around 35% of people with MND experience mild cognitive change, which can cause issues in executive functions such as planning, decision- making and language
• A further 15% of people with MND show signs of frontotemporal dementia which results in more pronounced behavioural change
• It kills a third within a year and more than half within two years of diagnosis
• It kills six people per day in the UK, this is just under 2,200 per year.
What causes MND?
Each individual may be affected by a different combination of triggers, both genetic and environmental, which makes it very difficult to determine precise markers for the disease. The Motor Neurone Disease Association Website has information sections on Causes and Research into causes, if required. Contact and link details are below.
Further Information
Attached are two Motor Neurone Disease Association publications:
• Living with motor neurone disease
• So what is MND anyway?
Contact Details – Further Information, Services and Support:-
The Motor Neurone Disease Association (MDNA) – Charity Registration No. 294354 is the only national charity in England, Wales and Northern Ireland dedicated to improve care and support for people affected by MND, fund and promote research, and campaign and raise awareness so the needs of people with MND are addressed by society.
MND Connect
MND Association
PO Box 246
Northampton NN1 2PR
Telephone: 08457 626262
Email: mndconnect@mndassociation.org
Website: http://www.mndassociation.org
MND Scotland
76 Firhill Road Glasgow G20 7BA
Telephone: 0141 945 1077
Email: info@mndscotland.org.uk
Website: http://www.mndscotland.org.uk
The Mike Findley Story
Mike Findley a brave and incredible man, and as many of you will know Mike is a CWU Gold Badge Holder and a Former CWU Regional Secretary, Divisional Representative, Branch Secretary and Branch Chairman, serving the Union for over 30 years before retirement in 1999 after which he became an active and distinguished leader in both Community Associations and Pensioners organisations, he became a local Councillor, Deputy Mayor and Mayor of Redcar and Cleveland Council. After diagnosis of MND in June 2005 he formed the Mike Findley MND Fund and has raised over £166,000 for MND, wining many awards and accolades for his efforts including an MBE in 2010.
On 17 June 2005 Mike was diagnosed with Motor Neurone Disease (MND) and told the average lifespan is two – five years, in 2007 after more tests he was told that I had the slower type of the condition called progressive muscular atrophy (PMA) which has a lifespan of 5+ years.
On 15 September 2005 along with family and friends he launched the Mike Findley MND fund and since then has organised many events to raise awareness of MND and to raise money for the MND Association’s ‘central research fund’, plus he has helped local people suffering with the disease through the MND care centre at James Cook University Hospital, Middlesbrough.
Mike says “There is no treatment or cure for Motor Neurone Disease the only outcome is death, with the majority of people with MND dying within 14 months. So it is vitally important that we continue to do all we can to raise awareness and money for research, in the hope that one day the world will be free of MND. So any support people can give will be much appreciated.”
The CWU H&S Dept has recently been in contact with Mike, and he advises that he has recently reached another milestone with it being 11 years since he was first diagnosed, and last September was the 10th anniversary of his MND fund, which to date has raised just over £166,000. He has also written an open letter To National Officers, Field Officers, Branch Officials and Members in the Communication Workers Union which is included in the LTB. This is attached.
Mike Findley would be happy to hear from anyone in the CWU wanting to help. Contact details are:-
4, Northfield Road
Marske-by-the-sea
Redcar, Cleveland
TS11 6EJ
01642/830220 (home)
07794612857 (Judith – treasurer)
mikefindley@ntlworld.com
judithfindley@ntlworld.com
Website:- http://mikefindleymndfund.com/
Attachments:-
• MND Guide Living With MND
• MND Guide – So What Is MND Anyway
• Letter from Mike Findley
Yours sincerely
Dave Joyce
National Health, Safety & Environment Officer
Email Attachments – Click to download
LTB 381/16 Motor Neurone Disease (MND) Awareness Month – ‘Shortened Stories’ – June 2016
CWU Eastern No5 Branch 
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