Navigating a new Parkinson’s diagnosis
April is Parkinson’s Awareness Month, and on Tuesday 11 April it’s World Parkinson’s Day. Last year, we worked with Parkinson’s Queensland to help raise money for their Newly Diagnosed Parkinson’s Program, an initiative that helps support those who have been recently diagnosed with Parkinson’s.
In support of Parkinson’s Awareness Month, we wanted to share information about Parkinson’s disease, specifically providing some ways to help deal with a new diagnosis.
Parkinson’s is a progressive neurological condition, which is characterised by both motor (movement) and non-motor symptoms. Getting diagnosed with Parkinson’s disease may be an overwhelming and scary experience. The diagnosis can bring about emotions of all kinds, from shock and disbelief to sadness and anxiety. For some, receiving a diagnosis may provide relief as the doctors have found a reason for the symptoms you have been experiencing.
It’s normal for those diagnosed with Parkinson’s disease to feel scared and uncertain about what the future holds, but it is important to remember that it is a situation that doesn’t need to be dealt with on your own. In fact, with the right support and resources, you can learn to manage your symptoms and continue to live a full and meaningful life.
If you or a loved one has recently been diagnosed with Parkinson’s disease, here are a few things to consider which may help you understand the diagnosis and prepare for the future:
1. Research the disease
One of the best ways to manage a Parkinson’s diagnosis is to educate yourself about the disease. Whilst Parkinson’s affects everyone differently, it is important to learn as much as you can about the symptoms, treatment options, and lifestyle changes that may be needed over time. There are lots of resources available including books, websites, support groups, and educational programs.
The Parkinson’s Australia website is a fantastic hub of information, and also provides a list of support options for each state around the country.
2. Seek support
Getting diagnosed with Parkinson’s disease can be an isolating experience, but it is important to remember that you are not alone. Reach out to friends and family members for support, and consider joining a support group for people with Parkinson’s disease.
These groups can provide valuable emotional support, as well as practical advice on how to manage the disease.
3. Take care of yourself
Living with Parkinson’s disease can be physically and emotionally exhausting, so it is important to take care of yourself. Maintaining physical and mental wellbeing through eating well, having a regular sleep routine and exercising helps improve your quality of life.
Exercise can be especially beneficial for people with Parkinson’s disease and it can improve balance, flexibility, and strength and can have a positive impact on mood. However, it’s important to talk to your doctor to find out what types of exercise are safe for you.
4. Manage your medications
Medications can play an important role in managing Parkinson’s disease symptoms, but it can be difficult to keep track of multiple medications and dosages.
Work with your doctor to develop a medication management plan, and use tools like a Webster-pak and medication reminder apps to stay on top of your medications.
It’s also important to keep an up-to-date list of all your medications (including dosages and schedules) and bring it with you to all your doctor’s appointments.
5. Stay engaged with your hobbies
Parkinson’s disease can sometimes make it difficult to participate in activities that you used to enjoy, but it’s important to stay engaged and continue to pursue your hobbies and passions.
Find activities you enjoy that you can continue to do with your symptoms, whether it’s painting, gardening, or playing a musical instrument. There are also plenty of exercise and dance classes created especially for people living with Parkinson’s available around Australia. These are a great way of maintaining physical activity whilst providing the opportunity to socialise with other people living with Parkinson’s in a comfortable, supportive environment.
6. Be proactive
Don’t be afraid to reach out whenever you need help. Parkinson’s disease is a complex condition, and it is important to work closely with your GP and other healthcare specialists to develop a personalised treatment plan. This includes speaking to your medical team if you notice a change in any of your symptoms or if you notice that your medication is not working as well as it used to, asking for further information around anything you do not understand or seeking out second opinions if necessary.
Also consider whether you need support with particular tasks such as housework or personal care. In-home care can help with this and can provide transport services to help you maintain social activities and take you to appointments or shops if you are no longer confident or able to drive. You might not need support with this immediately but consider what type of services you may need to help you in the future as your symptoms progress over time.
7. Practice mindfulness
Parkinson’s disease can be stressful, but mindfulness practices like meditation and deep breathing can help reduce stress, anxiety and depression.
It can be beneficial incorporating mindfulness exercises into your daily routine, whether it’s taking a few deep breaths before getting out of bed in the morning or setting aside a few minutes each day to meditate. Mindfulness can help you manage your emotions and improve your overall well-being.
A Parkinson’s diagnosis can be a difficult and emotional experience, but it is vital to remember that there is an abundance of resources and plenty of support available for you or your loved one.
Utilising your support network as well as the tools and resources available to you can help to drastically reduce the anxiety you may be feeling. Educating yourself about the disease, maintaining physical and mental wellbeing and seeking the relevant support can help you to manage your diagnosis.