7 Things People Newly Diagnosed with Parkinson’s Should Know

If you or your loved one has recently been diagnosed with Parkinson’s disease (PD), it is normal to feel overwhelmed. Our Newly Diagnosed guide is designed to help people with Parkinson’s and their loved ones who are beginning their PD journey.

Below we highlight seven things every newly diagnosed person should know, featuring information from our Newly Diagnosed guide.

1.     You are not alone.

There are one million people living with PD in the U.S. and nearly 90,000 are newly diagnosed every year. Even if you have a relative or friend with Parkinson’s, a diagnosis may feel shocking. Know that there is a passionate PD community ready to support you, in-person and online. When you’re ready, the Parkinson’s Foundation is here with the information and resources you need.

Call our Helpline at 1-800-4PD-INFO (1-800-473-4636) and follow us on social media.

2.     Adjusting to a diagnosis takes time.

It’s common to experience a wide range of emotions after receiving a diagnosis — relief, sadness, confusion and determination, to name a few. Take the time you need to understand what you’re feeling and reflect on what brings you joy.

Begin to educate yourself on Parkinson’s and the steps that you can take to live well. Taking control of the things you can, like staying informed, will help to minimize stress.

Explore our resources at Parkinson.org/Resources.

3.     Parkinson’s symptoms affect more than movement.

Though PD is often thought of as a disease that only impacts movement, most people develop other symptoms as well. Early signs of Parkinson’s include tremor, small handwriting, loss of smell, trouble moving and trouble sleeping.

Many people with PD experience non-movement symptoms related to mental health like depression, anxiety and apathy. If you are affected by these symptoms, know that you are not alone. Prioritizing mental health is critical to overall well-being.

Consider reaching out to a loved one, a counselor or a spiritual advisor and start building your support team.

4.     Every person’s experience with PD is unique.

As you start to learn more about this disease, remember that everyone’s journey is different. No two people with Parkinson’s will have the exact same symptoms or rate of progression. Begin tracking your symptoms to develop a stronger awareness of how PD impacts you and try to focus on what is most affecting you right now. You are the expert on your experience.

Physical, occupational and speech therapists can help at any stage. Talk to your doctor about building your care team, and asking for referrals for specialists who can help address symptoms that impact your daily life.

5.     Make the most of your PD care appointments.

Preparing in advance of your PD care appointments will help your care team tailor treatment to your needs and goals. Come prepared with a list of current medications, notes about current symptoms including which ones have the greatest impact on your daily life and at what time of day, and a list of questions for your doctor.

Try to bring someone with you to appointments who can help take notes and ask questions. At the end of appointments, ask for clarification if something is unclear and ask for a printed copy of notes or instructions.

6.     Exercise is essential to managing PD.

There are many things you can do between appointments to help manage PD. Parkinson's Foundation research shows that people with PD who start exercising earlier in their disease course for a minimum of 2.5 hours per week experience a slowed decline in quality of life compared to those who start later.

Establishing early exercise habits is vital to managing your PD symptoms. Exercise can help you maintain balance, mobility, and flexibility, as well as reduce the impact of non-motor PD symptoms like depression and constipation.

Find your nearest Parkinson’s Foundation chapter to explore local PD exercise classes.

7.     You can live well with PD.

By educating yourself about PD, building health habits that include taking care of your mental health, and working with your care team to tailor treatment to your needs, you can lay the foundation to live well with PD.

“Continue to do the things you love and know that you have amazing resource available to help you on this new journey,” said Diana, spouse of person with Parkinson’s.

Explore all stages of the care partner journey and practical tips that can help along the way on our care partner resource pages.

Our Newly Diagnosed Guide is designed to help people with Parkinson’s and their loved ones get started on their PD journey. Download or order your copy today.