Take Charge: Self-Advocacy Strategies to Make the Most of Healthcare Visits

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 expert discussion Taking Charge: Strategies for Meaningful Healthcare Visits. Speakers include: Taylor Rush, PhD, health psychologist at Cleveland Clinic, a Parkinson’s Foundation Center of Excellence; Kathleen Blake, MD, MPH, People with Parkinson's 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.

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.

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 symptom concerns to your doctor. Anxiety or 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. 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 page to discover resources to help you prepare for your next visit.