A diagnosis of Motor Neurone Disease (MND) can raise many questions for the person receiving the diagnosis as well as their family, friends and support networks. We have rounded up the top 5 questions we’ve been asked lately from across NSW, ACT and NT. From dysarthria to managing pain, these are the answers you have been looking for.
Question 1: Can I access FlexEquip if I live in the Northern Territory?
Yes, a limited range of communication aids and equipment is available to people living with MND in the Northern Territory.
The range includes:
- iPads with communication software
- Switches
- Switch mounts
- Bluetooth interface
- Voice amplifiers
- Switch adapted call bells.
Please note, FlexEquip requires a referral from a treating allied health professional such as an occupational therapist, speech pathologist, or physiotherapist.
Learn more:
Question 2: How can I manage swallowing difficulties and choking episodes?
MND can lead to weakening of the muscles in the mouth and throat. This can reduce a person’s ability to swallow and lead to choking episodes. Swallowing difficulties can also lead to dehydration, malnutrition, and constipation.
Top tips to manage swallowing difficulties and choking episodes:
- Adjust food and drink to make swallowing easier
- Monitor nutritional intake and hydration
- Optimise positioning for eating and drinking to protect the airway
- If a choking episode occurs stay calm and help the person focus on breathing
- Consult a physiotherapist for advice about assisted cough techniques
- Seek medical assistance, if required.
Speak to your multidisciplinary care team to help you manage swallowing difficulties and choking episodes. This may include an occupational therapist, speech pathologist, dietitian or physiotherapist.
Learn more:
- Eating, Drinking & Swallowing with MND
- Useful video on coping with choking from MND Scotland: Coping with Choking
Question 3: What is dysarthria?
Dysarthria is a term used to describe changes to speech. MND can affect the nerves and muscles used for speaking. Changes may begin with slurring, hoarseness, or weak voice. Around 80% of people living with MND will experience changes to their speech at different stages of disease progression.
If you are noticing changes to your speech, you can contact a speech pathologist for an assessment and to discuss communication aids and voice banking.
Learn more:
- Speech & Communication with MND
- Downloadable guides for each stage of navigating speech changes
- Communication aids available from FlexEquip
Question 4: I am experiencing pain. How do I manage this and who can help?
People living with MND may experience pain for a range of reasons including muscle spasms and weakness, pressure sores, stiffness, and constipation. Talking about your pain symptoms and seeking early intervention is important.
Top tips:
- Consider short or longer-term medications under the guidance of a general practitioner (GP) or neurologist
- Exercise under the supervision of a physiotherapist
- Manage constipation as advised by a GP, nurse or dietician
- Access equipment as recommended by an occupational therapist and advice about positioning to support joints and muscles
- Some people also find massage, warm packs and relaxation activities helpful.
Learn more:
Question 5: What is a clinical trial?
Clinical trials are important to test new treatments and interventions for people living with MND. Usually there are four phases to a clinical trial to ultimately determine whether an intervention is safe and effective. If you are interested in learning more about clinical trials and their processes, you can read this useful article from MND UK
There are many clinical trials currently running in Australia. MND Australia have a full list of Clinical trials in Australia. If you are interested in participating in a clinical trial, you can speak with your neurologist or MND clinic to discuss eligibility.
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
