Parkinson’s disease is progressive. This means it gets worse over time. The specific changes someone experiences will be unique to that person.¹ Keeping track of your Parkinson’s symptoms can help your doctor understand how your condition is changing and whether your medications are still working well.²

Certain symptoms tend to start or get worse as Parkinson’s progresses. Over time, you may need more help with activities of daily living, like taking a shower or getting dressed. You may experience¹:

• Uncontrolled movements (dyskinesia)
• Freezing of gait or temporary inability to move
• Falls
• Difficulty speaking
• Trouble with eating or swallowing
• Cognitive (thinking) changes
• Problems with using the bathroom

You might also start to experience “off” time the longer you’ve had Parkinson’s. “Off” time occurs when you experience Parkinson’s symptoms between medication doses. The effects of Parkinson’s medications wear off sooner as the disease causes more damage to cells in your brain. “On” time is when your medication is controlling your symptoms well.²

You might notice a return of certain motor symptoms during “off” time, such as^2,3:

• Tremors
• Stiffness
• Cramping (dystonia)
• Loss of balance
• Problems with movement, such as freezing of gait which is the temporary inability to move

It’s possible to notice nonmotor symptoms like fatigue, pain, mood changes, and brain fog.²

It’s important to talk to your doctor about “off” time so that you can get the help you need. Keeping track of your symptoms, especially “off” time symptoms, will help your doctor understand what you’re experiencing and what can be done to help you feel better.²

Your doctor may recommend changes to your treatment plan, such as¹:

• Higher doses
• More frequent doses or other changes to your medication schedule
• Additional medications

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Tracking Parkinson’s Disease Symptoms

For an easy way to track your Parkinson’s symptoms, visit MY PD-CARE. MY PD-CARE is a short questionnaire that asks you about your medication and your motor symptoms. MY PD-CARE focuses on motor symptoms because the main Parkinson’s drug is used to treat motor symptoms.¹

MY PD-CARE is based on a tool called MANAGE-PD, a questionnaire used by doctors that’s been shown to help them identify individuals whose Parkinson’s symptoms aren’t well controlled.⁴ MY PD-CARE was developed by experts from AbbVie Inc., an international group of movement disorder specialists, and the Parkinson’s Foundation.⁵

How To Use MY PD-CARE

You can either fill out the questionnaire on the web page or download and print a paper copy. After you fill out the questionnaire online, you’ll receive a summary page with your answers. You can then share the summary page with your health care provider. The results will help you have better conversations with your health care provider about your symptoms, how your condition is progressing, and which treatment options may work best for you.⁴

Having a detailed conversation with your care team can help you find solutions to improve your quality of life. You might be experiencing symptoms that you don’t realize are related to “off” time.² For example, people with Parkinson’s may suddenly not be able to move, called freezing. Freezing can happen when you try to start walking or you’re going through a narrow space like a doorway. This symptom can be related to “off” times.⁶

Freezing and other “off” time symptoms can make it hard to keep up with your daily routine and prevent you from enjoying your favorite activities. Talking with your doctor about everything you’re experiencing may shed light on issues you didn’t know were related to “off” time.²

If you or your loved one with Parkinson’s hasn’t consulted with a movement disorder specialist yet, consider asking for a referral. Learn about ways a movement disorder specialist can help with Parkinson’s symptoms.

Talk With Others Who Understand

MyParkinsonsTeam is the social network for people with Parkinson’s and their loved ones. On MyParkinsonsTeam, more than 102,000 members come together to ask questions, give advice, and share their stories with others who understand life with Parkinson’s.

Are you wondering if Parkinson’s is progressing for you or your loved one? Have you tried a symptom tracking tool?