"Through Our Eyes": NY Parkinson's Speaker's Bureau; Presenting "PD's Lesser-Known Symptoms"

Through Our Eyes: Understanding Life With PD's Lesser-Known Symptoms

The New York Parkinson's Speakers’ Bureau has been designed with the goal of offering sensitivity and awareness training to health care professionals working with the Parkinson’s population, through making available a speakers’ panel comprised of diverse members of people actually living with PD who are either members of the health care professions themselves, and/or experienced patient advocates or public speakers. Nothing is more valuable than hearing about living with a disease from "the horses' mouth." Guest speakers will attempt to help our audience to better understand the frustrating and extraordinarily mercurial issues they face (both motor and non-motor symptoms); the uniqueness of each patient’s presentation of this disease; and the lesser-known cognitive challenges we struggle with.

During our presentation, we will each, on the panel, present brief glimpses of the manifestations of PD through the unique windows of our daily lives, including a question and answer period. We will offer verbal and written suggestions about how to address issues specific to this disease through more efficient patient interviews, Parkinson’s-specific questionnaires to use during patient visits, and interventions that incorporate a deeper understanding of our frailties, while reinforcing our strengths. We will also distribute a packet of poems written by those with PD, about their disease. These poems are already being used to train health care practitioners in this field. In so doing, we hope to be able to offer a distilled, insider’s glimpse of issues pertinent to our illness that would not be accessible through written materials or textbooks.

Lesser-Known Symptoms, (and Lexicon), of Persons with Parkinson's

Most health-care providers who do not specialize in movement disorders are aware of the hand tremors and the slow, shuffling gait typical of the more advanced stages of PD, usually the most familiar characterizations of PWP’s (Persons with Parkinson’s.) Many, however, seem to be far less familiar with the wide array of other symptoms and issues common to us. These symptoms need to be recognized in order to more effectively treat those of us with PD. Additionally, a short-hand lexicon is often used within the PD population; it is one which needs translation in order to avoid confusion.

The phrase, "I'm going 'off''" (ie. "My medication is wearing off and I'm about to be barely able to move" right now) can be easily misconstrued by a health-care provider to mean, (as one PT student reported), that the speaker may be "about to act crazy." Likewise, "I'm frozen" (ie. "I can't move at all“) can be equally misinterpreted to mean, "Close the windows" or "Turn off the A/C." The following list roughly outlines some, (but not all) of the lesser-known symptoms, issues, and lexicon of PWP‘s, and can be more extensively and personally fleshed out by panel members during a speaking engagement.
Note: Treatment can be tailored to be sensitive to these specific problems; for instance, if an
HCP is assisting PWP'S using weight machines or exercises involving repetition, keeping count of the repetitions for the PWP can compensate for the short-term memory losses, and the difficulties in staying focused, both Executive Functions often lost as PD arrives.

All of the symptoms listed below can appear intermittently throughout each day, vary widely with each person, and can be both preceded and followed by hours of the PWP appearing to be symptom-free.