If you have recently been diagnosed with Parkinson’s, it’s very common to feel unsettled, upset and overwhelmed. At Shake It Up Australia, we hear from many people living with PD, and, just like the disease itself, there is no one way to experience a diagnosis. Your experience will be unique and it may take some time to navigate. To help, we’ve compiled some tips and resources to support you through this journey.
“My first thought was, ‘What the hell happened to me? What am I going to do?’ That took time to work through, but I found out that if I could accept what my situation was, and be honest about it, I could move forward. And my happiness grows in direct proportion to my acceptance.” – Michael J. Fox
A Guide for those Newly Diagnosed with Parkinson’s
Every person diagnosed with Parkinson’s disease embarks on a unique journey. There is no standard path, and, for many, this proves to be among the most challenging aspects of the disease. This guide has been developed by The Michael J. Fox Foundation for anyone whose life has been touched by Parkinson’s. It’s a candid and relatable guide for patients and families living with Parkinson’s and will help you to navigate your questions and next steps after diagnosis.
Managing Your Mental Health
Parkinson’s disease is a life-changing condition. As the Parkinson’s Foundation states, “for some people, a diagnosis can be a relief — an explanation for ongoing, unexplained symptoms. Others might experience loss or grief. Some may not even begin to process a diagnosis until years later”. These reactions are all completely valid. It’s important to be mindful of your mental health when first diagnosed, so you can discover healthy ways to come to terms with the changes. The Parkinson’s Foundation recommends you:
- Acknowledge your grief or feelings of loss
- Be kind to yourself
- Lighten to your load by connecting with others
- Build a care team
- Look into mental health care
- Find reasons to hope
“I realised, with gratitude, optimism is sustainable. And if you can find something to be grateful for, then you can find something to look forward to, and you carry on.” – Michael J. Fox
Learn more about Parkinson’s
Becoming more informed about the disease following your initial Parkinson’s diagnosis – from symptoms and trajectory to new research and treatments – can help you to manage your care. Share these resources with your family, friends and care team including your doctors and specialists, and ensure you’re only looking to credible sources of information. Here are some of the resources we have available to help:
- Living with Parkinson’s guides
- Treatments for Parkinson’s
- Caregiver information
- Parkinson’s and genetics
- Parkinson’s research news
Boost your brain health
A healthy diet, regular exercise, good quality sleep and social connection all help to keep the brain healthy and slow down cognitive decline. Some tips to consider after your Parkinson’s diagnosis include:
- Practicing mentally challenging tasks such as completing crosswords or puzzles can “work out” the brain.
- While there is no specific diet for Parkinson’s, it is recommended to eat a healthy balanced diet including whole grains, unprocessed foods, lean meats and fish and a variety of fruits and vegetables. What we eat may affect how well medication works and eases Parkinson’s non-movement symptoms such as constipation or low blood pressure.
- Exercise is one of the most powerful treatments for Parkinson’s disease. While exercise is an important part of healthy living for everyone, research has shown that exercise is particularly important for people with Parkinson’s to help maintain balance, strengthen muscles, and increase mobility.
- Many people with Parkinson’s have trouble falling asleep or staying asleep at night. Some sleep problems are caused by Parkinson’s symptoms, while others may be the result of the medications used to treat those symptoms. Factors unrelated to Parkinson’s can also impact sleep, including other medical conditions, normal aging or poor sleep hygiene. Talking to a GP to put together a plan for good sleep hygiene is important.
Hear from others with a Parkinson’s diagnosis
Human connection and storytelling is an extremely powerful way to create a sense of community and ensure you don’t feel alone in your experience. That’s why we launched the Shake It Up Show, a podcast about hearing the stories of those affected by Parkinson’s – whether living with the disease, caring for a loved one or working in the field. Reading or listening to the stories of others and understanding their experience can help you to feel more connected, uncover new ways of managing your symptoms, or allow you to build relationships with others in a similar situation. There are also many local Parkinson’s groups you can join, as well as online networks such as Facebook groups, forums or our own social media pages.
“Don’t be ashamed of it. Search out and find groups. I have met some amazing people… that’s a positive that has come out of this disease. Get out there, learn about it, there’s so much support there. Just ask and don’t stop asking.” – Sandra Gerschwitz
Taking an active role in research, fundraising or awareness raising can be a way to take control, make a difference for the future of people living with Parkinson’s and create a sense of positivity. At Shake It Up Australia we passionately believe that everyone can make a difference.
There are all kinds of ways to make a difference for Parkinson’s. Here are some ideas:
- Spread awareness. Talk to your family, friends and colleagues about the prevalence of Parkinson’s and importance of finding a cure.
- Share on social media. This is a great way to spread the word far and wide to educate more people about Parkinson’s.
- Join a fun run or athletic event and fundraise to support Australian Parkinson’s research.
- Engage your employer and get involved with workplace giving to make regular donations from your pre-tax earnings.
- Create your own fundraising challenge or event to raise money for research towards a cure.
- Get involved in research. Many research trials are looking for participants to take part in surveys, drug trials and other kinds of studies to improve care, find better treatments and ultimately a cure.
No matter when you were diagnosed, we hope you find some of these suggestions and resources helpful and comforting. The Shake It Up and Parkinson’s community is here for you as you navigate your diagnosis.