Motor Neurone Disease (MND) is the name given to a group of similar illnesses. These illnesses all cause damage to the nerves called motor neurones. These are the nerves that carry the messages which control our muscles. A common early sign of MND is increasing muscle weakness. This can show up in many different ways such as not being able to do something you could easily do before. Depending on which muscles are affected this early weakness could perhaps cause you trouble walking or lifting your arms. In about one case in four, it can start in the muscles we use to speak, chew and swallow; this can cause slurred speech and eating difficulties for some people.
There are many different kinds of problems that motor neurone disease can cause. However, it is important to remember that not everyone is affected in the same way. Just because something is mentioned here it doesn’t mean it will definitely happen to everyone who is affected by MND. Some people with MND never lose the use of their hands, others never lose the use of their voice and others are always able to walk.
The damage caused by MND is progressive. This means that the damage gets worse with time. As the disease progresses any affected muscles will weaken until, perhaps, the muscle can no longer do its job. As well as this, the effects of the disease will normally spread to other muscles in the same area. This can often cause the loss of use of that limb or part of the body. Motor Neurone Disease is a fatal muscle-wasting illness, MND strikes people in the prime of their lives and there is currently no cure
MND is diagnosed usually by a neurologist there is no specific laboratory test. Electrical tests are carried on the muscles and nerves. If you need a more information about diagnosis you should contact a neurology department.
There are four main types of MND, each affecting people in different ways. There can be a great deal of overlap between all of these forms, so, while it is useful to separate the various types of the disease, in practice, it is not always possible to be so specific.
Amyotrophic lateral sclerosis (ALS)
This is the most common form, with both upper and lower motor neurone involvement. This form of the disease is characterised by weakness and wasting in the limbs. Someone may notice they are tripping when walking or dropping things. Average life expectancy is from two to five years from onset of symptoms.
Progressive bulbar palsy (PBP)
This form affects about a quarter of people diagnosed, and involves both the upper and lower motor neurones. Symptoms may include slurring of speech or difficulty swallowing. Life expectancy is between six months and three years from onset of symptoms.
Progressive muscular atrophy (PMA)
PMA affects only a small proportion of people, mainly causing damage to the lower motor neurones. Early symptoms may be noticed as weakness or clumsiness of the hand. Most people live for more than five years.
Primary lateral sclerosis (PLS)
A rare form of MND involving the upper motor neurones only, PLS mainly causes weakness in the lower limbs, although some people may experience clumsiness in the hands or speech problems. Life span could essentially be normal, although it may be life-limiting, depending on whether it remains as pure PLS or develops into ALS.
Prognosis varies depending on the type of MND and the age of onset. Generally, life expectancy is 3 to 5 years, but it can be shorter or a lot longer. Stephen Hawking has had MND for 50 years
Some MNDs, such as PLS, are not fatal and progress slowly. People with SMA may appear to be stable for long periods, but improvement should not be expected. Some MNDs, such as ALS and some forms of SMA, are fatal.
Many theories have been proposed – viral infection, environmental poisons, metabolic disturbance and genetic defects. In the vast majority of cases of MND, there is no history of the disease in any of the immediate family members (grandparents, parents, brothers or sisters). This is called “sporadic MND”, because the disease appears for no apparent reason. However, in about 10% of cases, family history of the disease indicates that inherited genetic damage causes the condition; this is termed “familial MND”.
MND itself is not curable, but the symptoms that come with it can be managed in different ways. The only drug available to directly affect MND is called Riluzole or Rilutek. It is thought this drug slows down the progression of MND. The symptoms of MND can often be managed by drugs or in other ways. In general MND tends to affect the following areas, although not every person with MND will have problems in all of these areas, nor in this order.
Mobility (walking can gradually get more difficult), Hand and Arms (may become difficult to move and control), Speech (can become slurred), Swallowing (may become difficult), Muscles of the Trunk (tummy and chest may become weak), Weight Loss, Changes in Mood or Thinking, Breathing (may get breathless easily), Things can be done to help with each of the areas above through community health professionals, Occupational Therapist, Speech & Language Therapist, Dieticans, Physicos etc.
Each person who is diagnosed as having MND will be given the opportunity to meet an MND clinical specialist. This person has many years’ experience of dealing with MND and is an expert in the management of the disease. The clinical specialist might be introduced to you at a neurology clinic after diagnosis, or should make contact with you within a couple of days.
The clinical specialist will assess what help needs to be pulled in from community and health services in order to give you the support you need to live at home. Once the initial issues are dealt with the clinical specialist will keep in contact. If your circumstances or symptoms change it is important that you let the clinical specialist know about this change as soon as possible.
You will be looked after by a team of professionals which can include a neurologist, MND clinical specialist, occupational therapist, speech and language therapist, dieticians and district nurses amongst others. Members of this team will change depending on your symptoms and needs as the disease progresses.
I mention this condition because of the success of The Ice Bucket Challenge, which has gained unbelievable notice for this condition and raised an awesome amount of money for The ALS charity, I am going to post few facts and history of this challenge
Former Boston College baseball player Pete Frates, who has ALS began posting about the challenge on Twitter.[14] Frates is a patient advocate who was awarded the Stephen Heywood Patients Today Award in 2012 for his fundraising and advocacy work.[15] Frates' Boston College and sporting connections became an initial focus of the challenge and strengthened its focus on ALS.[16]
The President of the United States, Barack Obama, was challenged by Ethel Kennedy but declined, opting to contribute to the campaign with a donation of $100.[17] Justin Bieber,[18] LeBron James,[19] and "Weird" Al Yankovic[20] also challenged President Obama after completing the Ice Bucket Challenge. Former president George W. Bush completed the challenge and nominated Bill Clinton.[21] The Prime Minister of the United Kingdom, David Cameron, was challenged by both Alex Salmond[22] and Russell Brand,[23] but also declined in favour of a donation.
In mid-2014, the Ice Bucket Challenge went viral on social media and became a pop culture phenomenon, particularly in theUnited States, with numerous celebrities, politicians, athletes, and everyday Americans posting videos of themselves online and on TV participating in the event.[4][17]
According to The New York Times people shared more than 1.2 million videos on Facebook between June 1 and August 13 and mentioned the phenomenon more than 2.2 million times on Twitter between July 29 and August 17.[26] Mashable called the phenomenon "the Harlem Shake of the summer".[11]
Prior to the challenge, public awareness of the disease amyotrophic lateral sclerosis (ALS) was relatively limited; the ALS Association state that prior to the challenge going viral only half of Americans had heard of the disease,[26] often referred to as "Lou Gehrig's disease", after the famous baseball player Lou Gehrig, who publicly revealed his diagnosis back in the 1940s.
After the Ice Bucket Challenge went viral on social media, public awareness and charitable donations to ALS charities soared. The New York Times reported that the ALS Association had received $41.8 million in donations from July 29 until August 21. More than 739,000 new donors have given money to the association, which is more than double the $19.4 million in total contributions the association received during the year that ended January 31, 2013.[27] Similarly, the ALS Therapy Development Institute reported a ten-fold increase in donations relative to the same period in 2014,[28] with over 2,000 donations made in a single day on August 20, 2014, while Project ALS reported a 50-fold increase.[29]
The ALS Association, which had raised $64 million in all of 2013, raised more than $10 million on Thursday, August 21, 2014 alone.[30]
In the United Kingdom, people have also been facing the challenge for the Motor Neurone Disease Association, the only national charity in England, Wales and Northern Ireland focused on MND care, research and campaigning.[3]
So can I say to all who are taking the challenge, great work, not only are you all doing something fun, you've helped raise a staggering amount of money for a very worthy cause, and in spite of criticism have brought a condition to the forefront, I'm sure everyone who suffers from MND is welcoming the press interest to their disability, some are taking the challenge themselves, the power of people proven again
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