How to Help Someone With Motor Neurone Disease

Nurse Next Door

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“Help us beat the Beast”

Since 2015 , The Big Freeze event held annually on the Queen’s Birthday has seen Australia’s favourite heroes slide into icy waters with the warmest of hearts, with the likes of Shane Crawford, ‘Razor’ Ray Chamberlain, and Daisy Pearce joining forces to raise awareness for MND.

You can help to support this incredible cause by donating at fightmnd.org.au – where you can also purchase your own Big Freeze beanie.

 


Neale Daniher and his army of supporters to fight MND (Image Credit: FightMND).
 

What is MND

MND stands for Motor Neuron Disease.  Let’s break that down.

Motor Neurone Disease (MND) is the name given to the group of diseases in which the nerve cells (or neurones) that control the muscles slowly degenerate.

MND impairs and slowly stops the ability of the neurons to pass messages from the brain to muscles. This means it becomes increasingly difficult, and eventually impossible to move, speak, swallow and breathe. With no viable nerves, the muscles slowly but surely waste away.

The progression and onset of symptoms look different on a case by case basis, but many individuals may initially notice difficulty in performing simple tasks such as tying a shoelace, holding a pen, or turning a key in a lock.

Eventually, symptoms become so severe that the sufferer is unable to move, breathe, or swallow at all.

Cognitive decline has been reported in only 30-50% of cases, meaning that most sufferers of MND are aware of their loss of function and feel trapped in their bodies. This results in an increase in anxiety and depression. 

It’s a relentless and aggressive condition, with no truly effective treatment or cure.

That’s why it’s so important for more Aussies to join the MND community in the fight to “beat the beast”.

 

 

 

MND Quick Facts

  • Over half of people with MND are under the age of 65*
  • MND is more common in men
  • About 10% of MND is familial – meaning that the disease is passed down from generation to generation within the same family.
  • The mean age of onset is 58-63 years for sporadic MND and 40-60 years for familial MND
  • 50% of patients die within the first 30 months of symptom onset and only about 20% of patients survive longer than 5 years
  • In 2016, 791 people with MND died compared with 592 people with MND who died in 2001. The cause of this increase is mostly unknown.
  • MND patients have an average lifespan of only 2.5 years
  • Every day in Australia, at least two people are diagnosed with and die from Motor Neurone Disease.

Source: fightmnd.org.au/wp-content/uploads/2018/07/MND-The-Fast-Facts.pdf

 

Supporting Patients with MND

It can be a shock for the whole family when your loved one is diagnosed with MND, and can quickly lead to feelings of isolation, helplessness and hopelessness. That’s why it’s crucial for the individual and their family to enlist help and feel supported. With the right palliative and medical care, people with MND can improve their quality of life. Here’s how you can support your loved one:

 

 

 

Managing Fatigue

Fatigue is a common symptom of MND, which is why it’s necessary to conserve energy. It’s helpful to plan your favourite activities in advance, establish a regular sleeping schedule, and make your home environment as comfortable and easy to move around as possible. 

Promoting Better Sleep

People with MND often struggle with sleep due to symptoms of joint pain, excess saliva, and difficulty breathing, on top of the general stress of their diagnosis. Nurses and/or carers can aid in a better night’s sleep by providing light massages to aching muscles, assistance in moving into more comfortable positions, and reassuring conversations to promote relaxation.

Specialised Meal Preparation

Because difficulty swallowing is a common symptom of MND, it’s crucial to modify food intake and swallowing technique in order to prevent choking hazards. Caregivers can support specialised meal preparation with puréed (vitamised or blended) foods that are smooth, moist and free from lumps, and thus easier to swallow. It’s also beneficial that you are still served the foods you love, in a variety of flavours and colours, which not only promotes better flow of saliva but also mood regulation too. Carers will also be able to assist with reducing the size of each mouthful and modifying swallowing technique to prevent any choking.

Specialised Equipment

Mobility, communication and respiratory support devices are just some of the types of equipment that can help MND sufferers. It can enable them to be more easily cared for and to stay more connected with their families and communities.

Speech and Communication

Seeking a speech and language therapist who has experience working with MND can help to communicate with a person with MND. As Speech starts to deteriorate it will become increasingly difficult for both parties to communicate with each other.

 

“At this time of year, we hear a lot about MND fundraising, but not necessarily about how the disease affects an individual and their support group.  Here at Nurse Next Door, we work closely with our clients who have MND and their families to help them live the best life possible”

“Whilst it is obviously a big change for the individual diagnosed, MND impacts the whole family.” Says Di. “It brings me true joy knowing that we can help our clients achieve things they may not have otherwise been able to and assist in sharing the load with their loved ones by providing some respite.” – Di Geddes, RN. 

 

Looking for help? 

Contact your local GP
Contact a Specialist Neurologist
MND Australia
Disability Services
Disability Gateway
NDIS

 

We believe, with a positive outlook and an ability to remain in your own home, you are empowered to keep living life to the fullest. For any questions you have about how home care can help you or a loved one remain living independently at home, call us on 1300 600 247 or visit our website nursenextdoor.com.au to organise a FREE Caring Consult.

 

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