The MND NSW InfoLine answers hundreds of questions from people living with MND as well as their families, carers, and health professionals. This blog highlights the top five questions we’ve been asked lately from across NSW, ACT and NT. From dental care to respiratory weakness, this is the place to find helpful information and practical tips.
Question 1: I am noticing weakness in my neck, what can I do to manage this?
Weakness in the muscles of the neck may cause the head to droop which can result in discomfort, muscle strain, or injury to the neck and head. It can also lead to difficulty swallowing, speaking, or breathing.
Top tips to manage neck weakness:
- Use aids and equipment such as head collars and reclining chairs to support the head
- Following a medical review to eliminate other causes and problems, a physiotherapist may advise about gentle massage
- Get advice about re-positioning to ensure that the head and neck are supported during movement.
Speak to your multidisciplinary care team to help you manage neck weakness. This may include an occupational therapist, speech pathologist, or physiotherapist.
Learn more:
- MND Aware Living with MND - Aspects of care - Page 34-35
- Neck support available from FlexEquip: Neck support
Question 2: What are the signs and symptoms of respiratory muscle weakness?
MND can cause the muscles that are involved in breathing to weaken. These muscles are call the respiratory muscles. Weakness in the respiratory muscles often develops gradually or it can occur suddenly.
Signs and symptoms of respiratory muscle weakness can include:
- Shallow or faster breathing
- Disturbed sleep or increased fatigue during the day
- Quieter voice or fewer words per breath
- Weakened cough or sneeze
- Morning headaches
- Breathlessness when at rest or lying flat
- Difficulty concentrating, confusion, irritability, or anxiety.
It is recommended to get a baseline respiratory assessment from a respiratory specialist soon after a diagnosis of MND. Speak to your multidisciplinary care team to help you manage respiratory muscle weakness. This may include a physiotherapist, palliative care team, specialist respiratory nurse or respiratory physician.
Learn more:
Question 3: What is Kennedy’s Disease?
Kennedy’s Disease (also known as Spinal and Bulbar Muscular Atrophy) is a disorder which affects the lower motor neurons. This disease is not a type of MND but has similar symptoms.
Key features of Kennedy’s Disease include:
- Slow progressive weakness of face and limb muscles
- Symptoms onset between 35-40 years of age
- Men are more commonly affected
- It is a caused by an inherited gene change.
If you are living with Kennedy’s Disease in NSW, ACT, or NT you can get support from MND NSW.
Learn more:
Question 4: I am living with MND, how can I manage mouth care?
Managing mouth care is very important for people living with MND. MND can cause changes in saliva and weakness in the tongue and throat muscles. This can lead to mouth ulcers, bad breath, gum disease, and tooth decay.
Top tips for managing mouth care:
- Check mouth daily for caught food particles, oral thrush, and ulcers
- Use low foaming toothpaste
- Use a lightweight electric toothbrush
- If you cannot brush your teeth, swab the moth with non-alcohol water-based solutions
- Talk to your dentist about adjustments so they can provide dental check-ups and treatments safely.
Speak to your multidisciplinary care team to help you manage mouth care. This may include a speech pathologist, dentist, or GP.
Learn more:
- Daily life with Motor Neurone Disease | Living with MND
- MND Aware Living with MND - Aspects of care - Page 28-29
- QLD Royal Brisbane and Women’s Hospital has some helpful short videos about managing saliva problems in MND, including mouth care.
- The UK MND Association has a downloadable and printable guide called Information for Dental Teams, which you can take along to your appointment.
Question 5: What services does MND NSW offer to people living with MND and their families?
MND NSW provides information, support, education for people living with MND, their families and carers. Here is a summary of our services:
- Education includes a range of information sessions and workshops both in-person and online
- MND Advisor Program provides support, information, and linkage with services for people who are living with MND, including support groups
- Carer Program provides support and information to people who are caring for a person living with MND, including support groups
- FlexEquip is a service of MND NSW providing fast access to equipment and assistive technology
- NDIS Coordination of Support Service can assist you with the implementation of your National Disability Insurance Scheme (NDIS) plan.
More information about these services can be found here: What We Do
If a person who has been diagnosed with MND or their carer would like to register with us, they can complete our online intake form: Get Support - Intake. Alternatively, they can complete intake over the phone by calling the MND Infoline on 1800 777 175.
Do you have a question about MND?
Whether you’re newly diagnosed, caring for a loved one, or navigating the MND space as a health professional, we’re here to help.
Call us on 1800 777 175
Or submit and online inquiry at Contact MND NSW
“We can't do this alone. But together, we're unstoppable.”
- MND Community Member
