6 Fox Focus | Fox Insight
What ’ s Your Parkinson ’ s Vocabulary ?
“ Walking through molasses .” These three words best answered the question , “ How do you define fatigue ?” to one person living with Parkinson ’ s . “ Overwhelmed ” described the emotional fatigue several individuals felt . It ’ s clear that people and families with Parkinson ’ s disease have developed a highly personal and in some cases , quirky lexicon of terms they use to describe their symptoms .
“ Doctors , researchers and patients often use a different vocabulary to describe symptoms and disease ,” said Rachel Dolhun , MD , vice president of medical communications at The Michael J . Fox Foundation ( MJFF ). “ A clearer understanding of how people living with Parkinson ’ s experience their symptoms can lead to better conversations , care and research .”
In 2018 , MJFF funded a study to explore how people with Parkinson ’ s talk about their disease . Understanding patients ’ descriptions of these bothersome symptoms can lead to better conversations , tools and care and may
help inform trial design , getting us to new treatments faster .
The study included telephone interviews and online journaling which then informed a survey deployed through Fox Insight , MJFF ’ s online clinical study . Fox Insight participants help advance researchers ’ understanding of Parkinson ’ s by completing surveys about symptoms , lifestyle and other topics relevant to the disease .
Study findings showed that people with Parkinson ’ s described symptoms and experiences in unique and individualized ways and had different triggers and coping strategies .
When talking about “ off ” time , people with Parkinson ’ s used metaphors such as “ out of gas ,” “ my zombie state ,” or “ walking through mud ,” and the most common triggers were stress and anxiety . And nearly half described bothersome symptoms that would be missed by standard questionnaires conducted by doctors .