A monthly review of the top five issues raised in calls to the Parkinson’s NSW InfoLine team (call 1800 727 567).
- NDIS Changes – Understanding What They Mean for You
Recent changes to the National Disability Insurance Scheme (NDIS) have raised questions and concerns for many people living with Parkinson’s, particularly around how their funding and supports may be affected.
Some of the key changes include:
- Funding periods: Funding is increasingly being released in instalments, often every three months, rather than being available all at once.
- Plan reassessments: New requirements mean reassessment requests must be submitted using the correct form, with supporting evidence explaining why needs have changed.
- Changes to funded supports: There are clearer rules about what the NDIS will and won’t fund, along with changes to some support budgets.
- New planning processes: Further changes are being introduced gradually, including new assessments to better understand participants’ support needs.
For people living with a progressive condition like Parkinson’s, it’s particularly important that NDIS plans reflect changing needs and provide access to appropriate supports.
You don’t have to navigate these changes alone. Parkinson’s NSW has a dedicated NDIS Advocate who can help you understand the changes, prepare for plan reassessments, gather supporting evidence and navigate the process if you’re unhappy with an NDIS decision. If you’re concerned about how these changes may affect your funding or supports, contact our InfoLine on 1800 644 189 to find out how our NDIS Advocate can help.
- Gastric Reflux and Digestive Problems
We’ve had a number of calls about gastric reflux, bloating, wind, constipation and general digestive discomfort. These symptoms can be particularly troublesome for people living with Parkinson’s, as the condition can affect the muscles and nerves involved in digestion, sometimes slowing the movement of food through the digestive system.
Some Parkinson’s medications can also contribute to digestive symptoms. Simple changes such as eating smaller meals, avoiding lying down straight after eating, staying hydrated and identifying foods that trigger reflux may help.
It’s important not to assume that every digestive problem is caused by Parkinson’s. If symptoms are persistent, painful or affecting your appetite, speak with your GP. Treatment options are available, and a dietitian or gastroenterologist may also be able to help.
- Dizziness – Understanding the Causes
Dizziness is a common concern among our callers and can have several causes. In Parkinson’s, one of these is orthostatic hypotension, a drop in blood pressure when moving from sitting or lying down to standing. Certain medications, dehydration and other medical conditions can also contribute.
Dizziness can increase the risk of falls and sometimes leads people to avoid going out or participating in activities they enjoy. The good news is that identifying the cause can often lead to effective management strategies.
Getting up slowly, staying well hydrated and sitting down if you feel faint may help. However, it’s important to speak with your GP or neurologist to investigate the cause, review your medications and discuss appropriate treatment. Don’t let dizziness unnecessarily limit your independence or social activities when support may be available.
- Supporting Someone Experiencing Apathy
Apathy is more than simply lacking motivation. It’s a recognised non-motor symptom of Parkinson’s that can make it difficult for someone to initiate activities, engage socially or take an interest in things they previously enjoyed. For carers, this can be particularly frustrating and emotionally exhausting.
It’s important to understand that apathy isn’t laziness or a lack of effort. Changes in the brain associated with Parkinson’s can affect motivation, and the person may genuinely struggle to get started, even with activities they enjoy.
Carers can help by encouraging small, achievable activities, establishing simple routines and offering gentle prompts without placing too much pressure on the person. It can also help to recognise what is within your control and what isn’t. You cannot always change someone else’s motivation, but you can support them while also looking after your own wellbeing.
Apathy should be discussed with the treating neurologist, as treatment options and strategies may help. Carers need support too, and our InfoLine can connect you with Parkinson’s NSW counselling services, to help manage the emotional impact of caring.
- Loss of Smell
A reduced or lost sense of smell, known as hyposmia or anosmia, is a common non-motor symptom of Parkinson’s and can sometimes develop years before movement symptoms appear.
While it might seem like a minor inconvenience, changes in smell can affect appetite, enjoyment of food, nutrition and even safety. When food loses its aroma, it may become less appealing, sometimes contributing to reduced food intake and unintended weight loss.
There are also practical safety considerations. Someone with a reduced sense of smell may not notice smoke, gas leaks or spoiled food. Working smoke alarms, appropriate gas detectors and checking food expiry dates are particularly important.
If changes in smell are affecting your appetite or weight, speak with your GP and consider seeing a dietitian for advice on maintaining good nutrition. Our InfoLine can help connect you with appropriate health professionals and provide further information about managing non-motor symptoms.
