People living with tremor from Essential Tremor (ET) and tremor-dominant Parkinson’s Disease (PD) can feel overwhelmed by the challenges they face on a daily basis. Fortunately, there are organizations working tirelessly to support these patient communities.
I recently spoke with leaders of two prominent patient advocacy organizations to discuss the unmet needs in ET and PD based on their conversations with patients and caregivers. I spoke with Patrick McCarthy, Executive Director of the International Essential Tremor Foundation (IETF) and Sarah Jones, CEO of Parkinson and Movement Disorder Alliance (PMD Alliance).
Patrick began his work with IETF in 2015. At the time, he explained that people were frustrated because they had limited access to information. One key change he has noticed over time is that people with ET are becoming more open about the condition which is very positive.
While IETF is a small organization with limited resources, their goal is to expand education and awareness for ET. To do this, they see their mission in two parts; to promote ET as a movement disorder distinctly different from PD and highlight the options available to manage the condition.
In order to accomplish this, IETF engages in conversations through social media, including Facebook (12,500 followers), Instagram and their blog. In addition, IETF puts on a variety of educational programs independently and with partners as well as promotes over 70 local support groups across the U.S.
Patrick highlighted that people need to know that ET presents differently for each individual and a treatment that works for one person, may not work for someone else. He explains, “It is important that patients see a neurologist who specializes in movement disorders.”
Interestingly, while ET affects over 10 million people in the US¹, and PD around 1 million², PD has greater overall awareness. This situation presents a unique challenge for the PMD Alliance – People can get lost in information, Sarah explains.
When the PMD Alliance was established 4 years ago, there was a great deal of research happening, but it wasn’t necessarily translating into information that patients could understand. Recognizing this situation, PMDA sought to fill knowledge gaps.
One area of particular focus has been assisting doctor-patient interactions to ensure that patients understand PD and why the doctor has chosen their treatment plan. Too often patients can become confused with hurried doctor visits, finding information from suspect sources online, and getting information from friends who are not experts.
PMDA offers tools for people to learn about the many types of medications prescribed by their neurologist to address the different symptoms of PD. The goal is to develop materials that are practical and speak to patients in a language that is accessible and easy to understand.
To help people navigate the PD landscape, PMDA conducts workshops all over the country that are often live streamed and then uploaded to YouTube. Another need that PMDA addresses is coordinating support groups. Sarah was very enthusiastic about the importance of human interaction. “There is wisdom in the group,” she said.
A common thread in these two patient advocacy organizations is that members share their experiences with one another, which enables them to feel part of a community of people who truly understand what they go through every day.