## Breadcrumb - [Home](/) - [Resources & Support](/resources-support) - [Parkinson's Today Blog](/resources-support/blog) ## Breadcrumb - [Home](/) - [Resources & Support](/resources-support) - [Parkinson's Today Blog](/resources-support/blog) Raise Awareness # Take Charge: Self-Advocacy Strategies to Make the Most of Healthcare Visits Jun 16, 2025 ![A black man in a dark blue shirt speaks to an Asian doctor in a waiting room, who is showing him something on a clipboard.](/sites/default/files/styles/no_sizing/public/images/Make-Most-Blog-Header.png?itok=YEgHByqN) For many people with Parkinson’s disease (PD) healthcare appointments with a specialist are often far apart, short on time and packed with information. Learning to be an active member of your care team — prioritizing your concerns, questions and needs before and during every healthcare appointment — can help you optimize the value of each visit. *The following article is based on a Parkinson’s Foundation [Wellness Wednesday](https://www.parkinson.org/events/2025/May21WW) expert discussion [Taking Charge: Strategies for Meaningful Healthcare Visits](https://www.youtube.com/watch?v=VGBgjZ6VgPU). Speakers include: Taylor Rush, PhD, health psychologist at Cleveland Clinic, a Parkinson’s Foundation [Center of Excellence](https://www.parkinson.org/living-with-parkinsons/finding-care/global-care-network); Kathleen Blake, MD, MPH, [People with Parkinson's Advisory Council](https://www.parkinson.org/about-us/leadership/parkinsons-advisory-council) vice chair and retired cardiologist; and Muhammad Mahdi Nashatizadeh, MD, neurologist at the University of Kansas School of Medicine, a Parkinson’s Foundation [Center of Excellence](https://www.parkinson.org/living-with-parkinsons/finding-care/global-care-network).* ## **Your Voice Matters** Because no two people experience Parkinson’s the same way, diagnosis and treatment can be complex. Further, accessing expert Parkinson’s care can be difficult. While more than one million people in the U.S. live with PD, research shows that there are less than 700 neurologists trained in movement disorders nationwide. Most of these specialists are concentrated in urban areas, and it can take several months to get an appointment. Parkinson’s visits can be fast-paced, heavy on information and the gap between appointments can be significant. The priorities you want to cover might be different than those your doctor plans to discuss. It can be frustrating to leave an appointment without talking through your top concerns or fully understanding your doctor’s recommendations. Taking an active approach to your healthcare can address this frustration and help you get more out of each appointment. Parkinson’s care is a partnership. Your healthcare team brings medical expertise to the relationship while you bring your own expertise — your unique experience living with Parkinson’s and the knowledge of what is most important to your daily life and well-being. You know how Parkinson’s is getting in the way of the things you want or need to do. > “Remember, you are the one going through the process, so you're the expert on what your experience is — your healthcare team relies on you to share what your concerns may be and what the priorities will be,” said Dr. Nashatizadeh. ## **Active Participation is Key to Empowered Care** Self-advocacy — understanding what you need, gathering information to make good choices and speaking up for yourself — is a skill; one that gets stronger with practice. Research shows people who speak up about their needs and actively participate during their healthcare appointments experience improved outcomes, increased satisfaction and more cost-efficient healthcare. > “Self-advocacy matters because you are the only consistent member of your healthcare team. You are present throughout your journey, not just during the clinical visits but between the visits,” said Dr. Blake, who is living with Parkinson’s. - ### 1. Before a healthcare visit, take time to prepare. Think about what symptoms or challenges you are facing. Do you have concerns about how Parkinson’s impacts your health, relationships or hobbies? Write down the top three things you want to address with your doctor. Consider sharing those priorities with a care partner or family member who may offer valuable insight. Exploring evidence-based educational resources about your symptoms or concerns beforehand can make your appointment more meaningful. *Use our* ***[Steps to Prepare for a Parkinson’s Appointment worksheet](https://www.parkinson.org/sites/default/files/documents/Steps-Prepare-Parkinson-Appointment.pdf)*** *for a step-by-step guide to choosing your top three appointment topics.* - ### 2. During your appointment, prioritize what matters most. When you begin an appointment with what matters most to you, your healthcare team can use your needs to guide care decisions. Mention outstanding concerns or questions from your last visit. While the complexity of Parkinson’s can make it hard to know if a health concern is PD-related, it is important to be open and honest. Before you leave, be sure you understand the details of any recommendations your doctor has made or whether there is anything to watch for with a new medication or therapy. Request referrals to any outside resources or support you need. *Explore [Building Your Care Team](https://www.parkinson.org/living-with-parkinsons/finding-care/building-your-team) to become familiar with the specialists who can help address PD symptoms and improve quality of life.* - ### 3. Between visits, follow-through on the referrals and recommendations from your team and make the most of your time. Managing Parkinson’s symptoms often requires taking a team approach — working with different types of experts to address your needs as they arise. Getting and staying organized can help you manage medications, care recommendations and appointments with other specialists. Maintain and regularly update a list of your current medications to share with your healthcare providers at every visit. This is also a good time to get engaged. If you don’t have an [exercise routine](https://www.parkinson.org/library/fact-sheets/exercise-recommendations), find an activity you love and begin to work it into your daily schedule. Try connecting with other others. Exploring [local PD resources](https://www.parkinson.org/your-area) or joining a support group can help you build community. *Get the Parkinson’s Foundation [Hospital Safety Guide](https://www.parkinson.org/library/books/hospital-safety-guide) to discover personal care forms and medication schedules.* ## **More Tips for Optimizing Your Care** If you are comfortable including someone, bringing a companion to healthcare visits can be invaluable. Discuss roles before the appointment, so your companion or care partner knows how you prefer them to participate. Participation can help your companion gain a deeper understanding of Parkinson’s. They may also be able to take notes, share unique insights or help you follow through with any recommendations. While movement symptoms can take center-stage at a PD appointment, Parkinson’s impacts more than movement. Mention any [non-movement](https://www.parkinson.org/understanding-parkinsons/non-movement-symptoms) symptom concerns to your doctor. [Anxiety](https://www.parkinson.org/understanding-parkinsons/non-movement-symptoms/anxiety) or [depression](https://www.parkinson.org/understanding-parkinsons/non-movement-symptoms/depression), common in Parkinson’s, can impact your ability to follow through on treatment recommendations. Talk to your neurologist about persistent feelings of sadness or worry. > “Mood should certainly not be discounted or minimized because it's not a motor symptom,” said Dr Rush. “It affects motor symptoms, it affects quality of life, and it affects relationships and functioning.” Finding the right provider can be a process. If you feel like your healthcare provider isn’t hearing you or addressing your needs, or you leave appointments frustrated, it’s important to take action. Try addressing your concerns by: - Expressing your needs and expectations at the beginning of each appointment. Bring a written list of your top three discussion topics or ask your doctor about sending your list through the patient portal ahead of your next visit. - Having a friend in your corner. Consider asking a companion to support you or to help explain the details of how PD symptoms, challenges or care needs are impacting you. - Calling the Parkinson’s Foundation [Helpline](http://parkinson.org/helpline). Our Helpline team can help you prepare ahead of a visit, brainstorm solutions to challenges, or help you explore other care options. **Visit our [Making the Most of Your Parkinson’s Care](https://www.parkinson.org/living-with-parkinsons/finding-care/making-the-most) page to discover resources to help you prepare for your next visit.** ## Related Materials Fact Sheets ### [ Steps to Prepare for a Parkinson’s Appointment ](/library/fact-sheets/prepare-parkinsons-appointment) [Read Now](/library/fact-sheets/prepare-parkinsons-appointment) Podcasts ### [ Episode 140: What to Do When the Next Medical Appointment is Months Away ](/library/podcast/140) [Listen Now](/library/podcast/140) Podcasts ### [ Episode 2: The Parkinson's Foundation’s Role in Improving Standards of Care ](/library/podcast/2) [Listen Now](/library/podcast/2) ## Related Blog Posts ![Doctor talking to patient](/sites/default/files/styles/500x360/public/images/chartingcourseforpdcare-blog.jpg?h=c12e0b96&itok=9PMuoGfY) Raise Awareness ### [ Charting a Course for Parkinson’s Care ](/blog/awareness/charting-a-course-for-pd-care) READ NOW ![Daughter sitting with her father during a hospital visit with the doctor](/sites/default/files/styles/500x360/public/images/5-care-needs-hospital.jpg?h=ed9ce7df&itok=qL-Myrdu) Raise Awareness ### [ How to Communicate Your 5 Parkinson’s Care Needs During a Hospital Visit ](/blog/awareness/5-hospital-care-needs) READ NOW ![Man on computer for a doctor appointment](/sites/default/files/styles/500x360/public/images/telemedicine-blog.jpg?h=c85fcc42&itok=EKHYySd9) Tips for Daily Living ### [ How to Prepare for a Telemedicine Appointment ](/blog/tips/telemedicine) READ NOW ### Order a Parkinson’s Hospital Safety Guide The Hospital Safety Guide is a resource for people with Parkinson's and their care partners filled with useful tools and information to prepare for and navigate a hospital stay. [ORDER NOW](/resources-support/pd-library/order-publications) [LEARN MORE](/resources-support/hospital-safety-guide) ### Donate Today We have everything you need to live better with Parkinson's. Support our mission to improve care and advance research toward a cure. [GIVE NOW](?form=19983) - Share on Facebook - Share on X - Share on LinkedIn