Every year since 1997, the motor neurone disease (MND) community has marked June 21 as global MND recognition day.
This year, the Irish Motor Neurone Disease Association (IMNDA) is running a ‘Drink Tea for MND’ campaign to raise funds and promote the best methods of care, education, research and treatment for people with motor neurone disease throughout the country.
In 1874, the French neurologist Dr Jean-Martin Charcot first identified MND. Approximately one in every 300 people is diagnosed with the disease, and there are about 350 people in Ireland living with MND at any one time.
It can affect adults of any age, but usually after the age of 50. The average life expectancy is around three to five years and as yet MND has no cure.
Motor neurone disease describes a group of diseases that affect the nerves (motor neurones) in the brain and spinal cord that tell your muscles what to do.
With MND, messages from these nerves gradually stop reaching the muscles causing them to weaken. MND can affect speech, walking, talking, eating, drinking and even breathing.
Some people also experience changes to their thinking and behaviour. However, MND affects everyone differently.
Not all symptoms will affect everyone, or in the same order. Although the disease will progress, symptoms can be managed to help achieve the best possible quality of life.
The disease is more common in men than women, but this evens out with age. It is still not possible to give a clear answer about the causes of MND, as different things may trigger the disease for each individual.
The medical care for MND is complex and involves many specialists, depending on how it affects each individual. The care is usually led by a specialist doctor called a neurologist.
Specialists test breathing regularly and provide devices to assist breathing. Physiotherapists can address pain, walking, mobility, bracing and equipment needs that help patients to be independent for as long as possible.
Practising low-impact exercises may help maintain heart health, muscle strength and range of motion for as long as possible.
An occupational therapist can help find ways to maintain independence despite hand and arm weakness. Adaptive equipment can help those affected perform daily activities such as dressing, eating and bathing.
With a good understanding of how assistive technology and computers can be used, an occupational therapist can also help modify people’s homes to allow accessibility.
IMNDA chief executive Aisling Farrell said: “We are so grateful to all the people who host tea mornings every year because they help provide vital funds that go straight towards helping and all our patients. Let’s all raise a cuppa and share the stories of more than 360 families’ right across Ireland affected by this disease”.
You too can help: to organise Drink Tea for MND event throughout the month of June, people are asked to email firstname.lastname@example.org or Freefone 1800 403 403 to receive their Supervalu sponsored Tea pack.