Another month has flown by, and the MND NSW Info Line has been busy, responding to over 100 enquiries. In April, common questions were about clinical trials, what MND doesn’t affect, itchiness and sleep difficulties.
1. Does MND Cause Itchiness?
MND does not typically cause itchiness directly. However, some people with MND report experiencing intense itching. Possible reasons include:
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Dry skin – Reduced mobility and less frequent bathing can cause skin dryness.
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Pressure areas – Prolonged sitting or lying can lead to skin irritation.
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Medication side effects – Some medications may cause itchiness.
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Anxiety or stress – Emotional changes, including anxiety, can trigger itching.
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Allergies – Allergic reactions can also cause itchiness.
If you experience itching, speak with your medical or allied health team, as they may be able to help.
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2. What are the different phases of a clinical trial?
There are four phases of a clinical trial that must be followed before a treatment or drug can be approved:
- Phase 1 – Focuses on safety and tolerability in a small group of participants, often healthy individuals. It aims to determine safe dosage ranges and identify potential side effects.
- Phase 2 – Involves more participants and explores the optimal dose, timing, and method of drug delivery.
- Phase 3 – Involves hundreds of patients and assesses whether the drug has a beneficial effect. This phase determines if the drug can be approved to treat the condition.
- Phase 4 – Conducted after a drug is approved and available for sale. It involves ongoing monitoring to gather data on long-term effects in a larger population.
For further information-
3. Why am I struggling to sleep and what strategies can be implemented?
Trouble sleeping is also known as insomnia. It is common in the general population as well as in people living with MND. There are several reasons why someone with MND may have trouble sleeping.
These can include:
- Ineffective breathing
- Limited mobility
- Pain from stiff joints and muscles
- Side effects from medication
- Saliva management issues
- Psychological and emotional reasons
If you're experiencing insomnia or sleep difficulties due to any of the above, it’s important to speak with your allied health team. They may suggest strategies to help improve your sleep, such as:
- Body Positioning- Adjusting your position in bed can support breathing, relieve pain, and support with saliva management.
- Assistive Technology- A variety of equipment is available through FlexEquip, which may include:
- Electric beds.
- Mattress overlays.
- Specialised pillows.
Additional Sleep Tips
- Stick to a regular sleep schedule.
- Avoid caffeine and heavy meals before bed.
- Keep your sleep space quiet, cool, dark, and comfortable.
For further information, visit:
4. What remains unaffected by MND?
MND does not affect the senses of touch, taste, smell, sight, or hearing. Additionally, bowel and bladder control are not directly impacted by MND. However, issues may arise due to reduced mobility, changes in diet, medication or fluid intake.
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5. How many people are diagnosed with MND in Australia?
In Australia, it’s estimated that each day two people are diagnosed with MND and two people die from the disease. At any given time, approximately 2,688 Australians are living with MND.1
References-
1-What is motor neurone disease (MND)? | MND Australia
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