Advanced Therapeutics in Movement & Related Disorders® Congress is a continuing education conference for healthcare professionals—with a twist. It brings clinicians, patients, and care partners together as students and teachers. This year, the panel for the session “Lips Sealed, What Your Patients Aren’t Telling You” included me, a PMD Alliance Ambassador, and my son, Adam.
Adam is a husband and father with a career in healthcare as an Advanced Practice Provider (APP). He’s also the oldest of my three sons and one of my care partners. As panelists, we were peers and advocates, but we also brought the perspective of mom, son, care partner, patient, and clinician into the discussion.
We were the voices of Parkinson’s patients and their care partners. I felt the emotion of being his mom—his mom with Parkinson’s. I was nervous but incredibly calm—no tremors, dyskinesia, or anxiety. We were back up for each other, but Adam had the harder job. I like to talk, but he kept me focused and supported my answers.
The session focused on improving communication between the patient/care partner and physician based on data from a survey and a NeuroLifeOnline livestream, “Lips Sealed: What You’re Not Telling Your Doctor.” The prominent and alarming statistic showed that 82% of patients have something relevant to their health that they’re not telling their doctor.
As we discussed what patients are not telling their doctors, we discovered we need to know why they are holding back and strategies to improve communication. Taking a deep dive into this topic has the potential to impact patient care, and those attending our session wanted to learn.
Some of the key takeaways from my perspective:
- Take a few minutes to level the playing field. Ask about my breakfast. See a person, not just a patient.
- The appointment is about the quality of time rather than the amount of time.
- Allow self-evaluations. The UPDRS (Unified Parkinson’s Disease Rating Scale) is a valuable tool for clinicians but does not provide patient input.
- Allow time alone with the physician. Many Parkinson’s patients are embarrassed to talk about uncomfortable topics with care partners in the room.
- Create a safe space and build trust.
- Mental health and understanding the family dynamic are crucial to a care plan.
- As patients, we understand that doctors have hundreds of patients, but we only have one doctor.
That day, Adam had a front-row seat and participated in the passion that drives his mom. He had the opportunity to “tell it like it is from an adult son who wanted to help as a clinician but needed to be my son.” He stressed the importance of the family dynamic and the mental health side of things—which I tried to hide during my journey. It carries a stigma that it shouldn’t. Now, I am an advocate for family therapy because it is clear to me that a Parkinson’s diagnosis is a family diagnosis and affects everyone.
As PwPs, we must tell our care partners we are grateful for them. The journey is a tough one, but communicating and finding laughter brings you together, and no one is alone. For this reason, I did my best to sprinkle in some humor to the discussion and invite my fellow panelists to do the same.
I’ll end with my unexpected takeaway.
Someone at the conference later approached me about my role as a grandmother. They asked if it was what I expected. I had to think about it for a while, but I answered truthfully and said, “She is the biggest joy in my life, and I can keep up with her now, but that will change, and I never expected that I would have to think about that. But we’ll read books and do other things when that time comes.”
Life with Parkinson’s is a life of accepting, adjusting, and adapting to change. Change is unpredictable but inevitable. Parkinson’s changed my life, giving me challenges but also a passion and a purpose. As my granddaughter grows up, I hope she sees that and knows that her Nonni did her best to help others, and this year, at ATMRD, her daddy did, too.
ATMRD Scholarship Applications for Fellows, Residents, Advanced Practice Providers, and General Neurologists are open now until Dec. 31. Apply Here
For more insights on Lips Sealed at ATMRD, check out ATMRD 2024: Warm, Welcoming Community in Movement Disorders on this blog or visit NeurologyLive to watch interviews with panel moderator Kelly Papesh, DNP, APRN, FNP-BC or panelist Anissa Mitchell, LCSW.
