People with Parkinson’s and care partners may use the term “OFF” as a descriptive term—“wearing OFF,” “OFF,” “OFF days,” etc.—all with different meanings. Some people with Parkinson’s do not use the term “OFF” at all, but rather “good days or bad days” to describe potential OFF periods, which can be subjective.9 People with Parkinson’s/care partners descriptions of OFF periods focus on personal anecdotes rather than an OFF-time lexicon.10
People with Parkinson’s may see a number of different healthcare professionals (HCPs) over the course of their Parkinson’s journey (e.g., primary care physicians [PCPs], neurologists, movement disorder specialists [MDSs], etc.). Among HCPs, there is wide variability in their knowledge about Parkinson’s and the language they use when discussing the condition. PCPs use non-descript terms like “breakthrough symptoms,” whereas specialists use specific and technically oriented language.9
Hear from Ron Cohen, M.D., President, CEO and Founder of Acorda Therapeutics, Matthew Stern, M.D., Professor Emeritus of Neurology, Perelman School of Medicine, University of Pennsylvania, and Steve DeWitte, who has been living with Parkinson’s since 2005, about the importance of bringing together the circle of the care to improve conversations around Parkinson’s.
Time, days, morning, when, sometimes, commonly, frequently, periods, episodes
Up/down, freeze, frozen, hold, stop/go, move/stuck, ON/OFF
“So, it wears off?”
“The effect of [medication] goes down more in the morning and in the afternoon, 3 pm.”
Had a defined lexicon drawing on patterns and episodic language
“I started off, it was just a little pain.”
“I like to walk, but I’m afraid to get too far from the house…I won’t get back, you know.”
Personal narratives and comparative language
“I was standing at the kitchen sink doing something. I feel all of the sudden very, very weak, so I, I can walk over to the chair, and I sit…I’m really out of it.”
Relied on personal anecdotes and did not rely on an OFF-time lexicon
PwPs, people with Parkinson’s.
The Statement of Need, the first output of “Live Well. Do Tell.”, includes six actions for the Parkinson’s community to help identify and communicate about their symptoms. These actions are based on insights from our inaugural Steering Committee meeting as well as research conducted by Acorda and third parties.
People with Parkinson’s tend to under-report the frustration and impact of OFF on their day-to-day lives despite research suggesting that half of OFF periods are very bothersome.9,12,13 The re-emergence of symptoms is both a painful reminder of the gravity of Parkinson’s disease and the possibility of progression.9,10
Newly diagnosed people with Parkinson’s are bombarded with complex emotions ranging from denial to fear, which may cause them to avoid talking about Parkinson’s symptoms.9 Those who have been living with Parkinson’s disease for years may not want to talk about symptom re-emergence because they believe it is a sign of disease progression.9,10
PEOPLE WITH PARKINSON’S TEND TO uNDER-REPORT THE FRUSTRATION AND IMPACT OF OFF ON THEIR DAY-to-DAY LIVES9,10
People with Parkinson’s and care partners may feel that some symptoms are just part of the condition and need to be accepted, or that the appearance of symptoms can be attributed to some other change in their lives (e.g., experiencing more stress, not getting enough sleep, exercising less or more frequently) and are not related to Parkinson’s.
Additionally, people with Parkinson’s may not fully communicate their symptoms to their care partners, leaving them unaware of the frequency or impact of variable symptoms on the person with Parkinson’s. These factors can affect a care partner’s ability to report their observations to the HCP, even though they may be able to identify patterns and re-emerging symptoms when the person with Parkinson’s does not.9
PEOPLE WITH PARKINSON’S MAY NOT FULLY COMMUNICATE THEIR SYMPTOMS TO THEIR CARE PARTNERS9
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