Finding your voice with MND
You may have seen talk in the media recently about ‘The Big Freeze’, or seen those blue beanies roaming around the streets of Melbourne over the last few weeks. But what is this actually for? ‘The Big Freeze’ is an initiative run by Fight MND, Australia’s leading MND foundation. It was co-founded by former Australian Rules Footballer, Neale Daniher, who was diagnosed with Motor Neuron Disease in 2013. You may also remember from a few years ago the infamous ‘Iced-Bucket Challenge’, whereby people posted photos and videos of themselves online pouring iced-water on their heads. This was also to raise awareness for ALS, a type of MND.
So, what is Motor Neuron Disease?
Motor Neuron Disease (MND) is an ‘umbrella’ term for a group of diseases. These diseases are characterised by changes to the nerve cells (known as neurons) that enable us to move, speak, breathe and swallow. When somebody has MND, over-time their ability to complete these day-to-day functions is significantly compromised due to these neurological changes. Although the disease will progress, symptoms can be managed to help achieve the best quality life.
Basic facts about MND
MND is a progressive, terminal neurological disease.
MND affects everyone differently. Not all symptoms will affect everyone, or progress in the same way.
There is currently no cure for MND, but symptoms can be managed with the support of Allied Health Professionals.
It can affect adults of any age, but it is more likely to affect people over 50 years.
As mentioned above, MND is an ‘umbrella’ term used to describe a range of diseases. There are different types of MND including: Amyotrophic lateral sclerosis (ALS), Progressive Bulbar Palsy (PBP), Progressive Muscular Atrophy (PMA), Primary Lateral Sclerosis (PLS), and Kennedy’s disease.
Support for living with MND
A person with MND will often have a team of multiple health professionals, who can all offer professional support to manage related symptoms. There are many needs a person will have when managing their MND, across different aspects of their life. This may include, but is not limited to...
Physical needs such as:
Maintaining body temperature
Pain, stiffness and cramping
Communication needs such as:
Other needs include personal care, emotional wellbeing, swallowing (eating and drinking), and home comforts. Health professionals that can support people living with MND include Speech Pathologists, Occupational Therapist, Physiotherapist and more.
Often, the health professionals will work together to help you achieve your needs and goals. For example, an Occupational Therapist and Speech Pathologist both supporting you with mounting and setting up a communication device, or seating arrangements and equipment for mealtimes.
How can a Speech Pathology help with MND
MND can cause weakness in the facial muscles such as the tongue, lips and jaw, which may impact upon the person’s speech. For example, their speech may become faint, slurred or unclear. MND can also affect gesture, facial expression and the muscles involved in the process of swallowing. This means that speech, communication and swallowing can become increasingly difficult for someone with MND as their symptoms progress.
A certified Speech Pathologist can provide support to manage communication, speech and swallowing difficulties. This can look like exploring communication options such as different aids and devices.
Before purchasing any equipment, it is best to consult with a Speech Pathologist who will be able to complete an assessment to assist with this process. There are also different funding streams and models that the Speech Pathologist can assist you to apply for, to potentially fund the device. The Speech Pathologist may also need to work with an Occupational Therapist when prescribing equipment or a device.
Speech Pathologists also have a crucial role in supporting individuals with their swallowing. People with MND may experience ‘dysphagia’, which is a term used to describe difficulties with swallowing food, drinks and managing saliva.
Speech Pathologists can provide you with both communication and swallowing support for individual’s living with MND for both the ‘here and now’, as well as anticipated needs for the future.
Our Speech Pathology team at OSCAR Care Group
At OSCAR Care Group, our Speech Pathology Team can provide communication and swallowing support for people living with MND. We can provide assessment and intervention such as exploring communication devices and aids. Additionally, we provide comprehensive swallowing assessments, recommendations and education regarding any swallowing concerns. We help clients meet their current communication and swallowing needs, as well as prepare for those in the future.
By Natalie Ceravolo, Certified Practising Speech Pathologist for OSCAR Care Group
Our private practice offers home visits within Melbourne, telehealth or face to face within our clinic in Mount Waverley, Victoria. OSCAR Care Clinic see private patients, Medicare referrals, DVA and if you or someone you know receive funding from NDIS (plan-managed or self-managed), our Speech Pathology team can help! Read more here.