A Person with Parkinson's Voice at ATMRD - PMD Alliance

As a relatively new PMD Alliance ambassador, the thought of representing them at ATMRD (Advanced Therapies in Movement Related Disorders), a three-day conference for healthcare professionals, was intimidating. The event spanned generations of young, eager-to-learn professionals to their mentors wanting to share their knowledge. It included healthcare providers, industry reps, PD organizations, and the voice of a Parkinson’s patient and her care partner.

This is our story.

When we arrived on Saturday, the event was in full swing, with people greeting each other in “3D.” It was exhilarating to see an entire person rather than a Zoom screen.

Zoom is a valuable tool, but shaking a person’s hand is a great way to make a good impression. It’s a lost art. Look a person in the eye, firmly grasp their hand, and be confident in your introduction. Instead, greetings have become “The Awkward Noodle Arm.” Do I nod, shake hands, fist bump…what is expected?

It was time to man the table.

Our first three encounters began and ended with providing directions to the restrooms. No handshakes, nods, or fist bumps… I was discouraged. However, a few minutes later, the sessions ended, and I began talking with the attendees. We shook hands with whomever accepted, and my husband was introduced as Mr. Lori… The day was looking up.

The collaborative care partner survey by Kyowa Kirin, Davis Phinney & PMD Alliance was a topic of my column, “Recent Research Confirms the Need for Parkinson’s Caregiver Support,” and a catalyst for many conversations in the homes of patients and care partners, including my own. Ina Islam, Manager, Patient Advocacy and Communications at Kyowa Kirin, thanked me for the column. It was awesome to learn that the column had made its way around the company. Later, Mike and I found the poster featuring the survey, and it led to more conversation about care partners.

An interview with Neurology-Live provided an opportunity for me to share the results of a survey of the healthcare experiences of “my PD peeps.” The mini-poster was on our table, but an interview was a different platform to share many patients’ perspectives. Click to view the interview and the key take-aways and our results which supported the findings discussed by healthcare professionals. As patients, we understand that It’s not from a lack of concern, it’s numbers – our patient community is growing faster than the number of Movement Disorder Specialist (MDS) Neurologists.

The APPs (Advanced Practice Providers) including Certified Nurse Practitioners, and Physician Associates/Assistants, are bridging the gap on care teams and getting their much-deserved “seat at the table.’ I will admit I am a bit biased since our son is an APP. Kelly Papesh, the Executive Director of a group called the Association of Movement Disorder Advanced Practice Providers, or AMDAPP, spoke with Neurology Live providing an overview of the new group and the exciting things to come.

The day was a great experience, but there was one awkward moment. While listening to the speaker, he said, “How you treat your patients.” Suddenly, I felt a neon sign which read “pd patient” hovering above my head. No, I was not hallucinating – instead, it was a feeling of vulnerability. I was listening to them talk about a version of me now or a version of my future self – it was unfamiliar territory.

Getting past the moment, I settled in and learned a few things, including that I experience more “OFF” time than I realized. I have adjusted my medications with my MDS, and that’s managing it better. However, the most important takeaway was this group of professionals will make a difference in the future treatment of PD. It’s reassuring to know we have some of the best and brightest in our corner.

Our future is in good hands. We may have different paths, but we share the same passion – ending our journey with a cure.

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