MY PD-CARE, a Parkinson’s Disease Resource to Support Confident Discussions with Your Doctor
What is Parkinson’s disease?
Parkinson’s Disease (PD) is a progressive neurological disorder with defining clinical symptoms that include tremor (involuntary shaking), bradykinesia (slowness), rigidity (stiffness), and balance problems. While PD is primarily referred to as a ‘movement disorder,’ it is also becoming more clear that PD impacts areas beyond movement. These symptoms are called ‘non-motor’ symptoms, and examples include but are not limited to depression, anxiety, sleep and gastrointestinal issues. The symptoms of PD can present differently for everyone and can also progress differently for everyone. Therefore, it’s important to identify the issues that are bothersome to you when speaking with your HCP.
How might symptoms change over time?
As the disease progresses, medications for motor symptoms may no longer work as well and may need adjustments or changes. Your health care provider may start using terms like “Off” or “On.” “Off” time is when your medication is not working well and you experience motor symptoms. When you’re “Off,” you might feel stiff or slow, and may describe it as sluggish, or like your limbs are resisting the ability to move. You may feel fatigued or have trouble walking, where you have a hard time picking up your feet or your legs might feel “rubbery.”
It is important to monitor and document the frequency and duration of these “Off” periods and talk to your health care provider at every visit about your symptoms to support shared decision making with you and your provider.
How can MY PD-CARE help?
MY PD-CARE is designed to assist you in tracking your PD symptoms and “Off” time. This tool can aid you and your health care provider to better understand your current symptom status to determine the best course of treatment for you. MY PD-CARE was developed in collaboration with Parkinson’s Foundation, an international group of Movement Disorder Specialists (a neurologist with additional training in PD) and AbbVie Inc. Additionally, the MY PD-Care tool is now available in Spanish to meet the needs of patients and care partners who prefer to communicate with their provider in their native language. The questionnaire is intended for patients and/or care partners to complete and discuss the results with their treating health care provider. The questionnaire takes approximately 5 minutes to complete. It’s designed for patients to complete before coming into the office or while waiting in the office to enable a more meaningful discussion and help you and your provider identify whether adjustments to treatments may be needed.
Upon completion of the online questionnaire, a summary will be generated that you can use to help guide a conversation with your Parkinson’s health care provider at your next visit. The website includes patient education around PD progression and links to resources from the Parkinson’s Foundation (www.mypd-care.com). Similarly, your health care provider has access to a related, clinician tool, known as MANAGE-PD to further assess your PD symptoms.
Example questions within the questionnaire include, “How many times a day do you take oral levodopa pills?” and “Do you experience random fluctuations of motor symptoms with your current oral treatment?” It also includes definitions to better help you understand the questions, as well as common terms your health care provider uses to describe your Parkinson’s disease symptoms.
Please be sure to always speak with your healthcare provider about your medical questions. Only you and your healthcare provider can determine whether a tool like this is right for you.
- Chahine, et al. Movement Disorders Clinical Practice 2020; 7(3):284-292.
- Parkinson’s Foundation. Accessed February 16, 2022. https://www.parkinson.org/Understanding-Parkinsons/Symptoms/MovementSymptoms/Dyskinesia.
- Motor fluctuations. Parkinson’s Foundation. Accessed February 16, 2022. https://www.parkinson.org/pd-library/fact-sheets/motor-fluctuations.
| Term | What does that mean? | |
| “Off” time
|
A period when Parkinson’s symptoms return. Symptoms of “off” time present in many different ways and are often described by patients (but not limited to) as:1 | |
| · Slowness
· Stiffness · Motor fluctuations · Freezing · Unsteady · Trouble walking · Tremor · Shakiness · Jittery |
· Restlessness
· Difficulty getting in and out of a chair · Less hand coordination · Tightening of muscles · Anxiety |
|
| Dyskinesia | Bothersome extra movements that you don’t have control over, especially after your oral medication dose, and can interfere with your day-to-day activities (can occur, for example, in your arm, leg or trunk)2 | |
| Fluctuations | Times when you are feeling well for part of the day (when your Parkinson’s symptoms are well controlled) and not feeling well for the other part (when your Parkinson’s symptoms have returned).3 | |
ABBV-US-01263-MC v2.0 approved 05/2023
