Making the Most of Your Parkinson’s Care

Use these questions to reflect on the ways that PD impacts the things that are important to you. 

• Symptoms

  • What symptoms bother you most? Think about how often you notice them and the effect on your daily life.  

  • Ask family members or friends if they’ve noticed changes.  

  • Keep track of symptoms using a journal, calendar or smartphone app. Note the time-of-day symptoms occur and anything that triggers them.  

• Goals

  • What are you focused on right now? For example, staying active, going to a family event or continuing to work. 

• Concerns 

  • What are your current worries about Parkinson’s? For example, the cost of medications, staying independent or intimacy with your partner. 

After reflecting, decide what is most important to discuss with your healthcare team right now. Consider: 

• What is affecting your daily life. 

• What needs to be addressed as soon as possible. 

• What matters most to you. 

Bring your list of topics to your next appointment. Share bothersome symptoms openly, even if you’re not sure that they are related to PD. 

Make a list of all the medications, vitamins and supplements you currently take, even those that are not PD-related. Include:

• How much you take (dosage) 

• When you take it  

• What you take it with (food, water) 

• Any other notes, such as:  

  • Medications not lasting as long as they used to (symptoms coming back more quickly) 

  • Difficulty with swallowing certain pills 

  • Medication side effects like headaches or constipation 

Use our medication tracker template to get started. 

You can also bring your medicines with you to your appointment. Do this especially if you need to take them around the time of the appointment. 

If you can, take someone you trust with you to your appointment. They can help you take notes, offer another perspective and help review your follow-up steps. They can be your spouse, friend, or your exercise buddy!  
 
Give plenty of notice: invite your trusted person at least two weeks before the appointment.  

Living alone? Many people with Parkinson’s do! Learn more on our Living Alone page. 

Focus first on current symptoms or concerns. You may find answers to the questions you were planning to ask your healthcare team.

Learning about Parkinson’s can also help you communicate with your healthcare team. For example, you could say: 

• “My family said my voice is getting quiet and they’re having trouble hearing me.  I read that can be a PD symptom. Is there anything I can do?” 

To get started, explore the information and resources on the below pages or call our Helpline at 1-800-4PD-INFO (1-800-473-4636).  

• Understanding Parkinson’s Disease 

•  Living with Parkinson’s Disease  

•  Resources & Support  

Visit Parkinson.org/Español for resources in Spanish 

Share the list of your top three discussion topics at the start of your appointment. Be clear and specific. Your healthcare team may use this information to: 

• Adjust your current treatments 

• Prescribe new therapies 

• Offer resources or referrals 

If something is unclear, ask for clarification. It is important that your healthcare team explains things in a way that makes sense to you. For example, you can say: 

• “Can you explain that in a different way?” 

• “I think you’re saying [explain in your own words] …is that correct?” 

If you still have questions or need referrals after your appointment, contact our Helpline. Call 1-800-4PD-INFO (1-800-473-4636) or email Helpline@Parkinson.org. 

Before you leave your appointment, ask your healthcare team: “What steps can I take between appointments to help with my symptoms and do the things I love?” 
 
This may include: 

• Medications 

• Exercise 

• Referrals: Parkinson’s care takes a team! This can include physical therapists, speech therapists, mental health professionals and others. Ask how these professionals could support your care and if you can get a referral.    

Ask for a printed copy of your team’s notes or instructions. Lastly, make sure you know the best way to contact them between visits — you may have follow-up questions. 

If your healthcare team does not meet your needs, contact the Parkinson’s Foundation Helpline to help you explore possible options.  

Take time to go over any notes you or your healthcare team made, or any hand-outs they gave you. This will help you remember what you discussed with your healthcare team and help you plan your next steps.

Create a plan to act on the recommendations you discussed with your healthcare team. Write a to-do list with deadlines to stay on track. For example, you may plan to: 

• Join a local Parkinson’s exercise class or support group. 

• Follow-up on a referral to physical therapy.  

• Learn more about a particular treatment or symptom.  

To help with your action plan you can: 

• Explore our resources and support page. 

• Connect with your local Parkinson’s Foundation chapter to find local community events, exercise classes, and support groups. Find a chapter near you at Parkinson.org/Chapters. 

• Contact our Helpline at 1-800-4PD-INFO (1-800-473-4636) for referrals to specialists and local exercise and wellness classes.

Keep track of how your symptoms, medicines and lifestyle changes (like diet, exercise and sleep) affect you.  

• Note any changes in your symptoms or how they affect your ability to do everyday tasks.  

• Look back at your top three list from your last appointment. Are you feeling better, worse or the same about those concerns?  

• Keep a journal in a notebook, on your computer, or on a smartphone app. You can also have your family and friends help you. Use this information to prepare for your next appointment, and the cycle starts over again!