After you've lived with Parkinson's for a few years, your symptoms can become harder to control and predict. Your medicine might wear off before it's time for the next dose. Or your symptoms can alternate between "on" times when they're well-controlled and "off" times when they come back.
These "on" and "off" symptoms are called motor fluctuations. They happen more often as the disease gets worse. When your symptoms come and go, it's hard to know when your medicines will work and when they won't.
A diary can help you track your daily symptoms for a period of weeks and months to look for patterns. You can start to see how well your Parkinson's drugs are working, and when their effects don't last long enough.
Your doctor can use your notes to fine-tune your medicine dose and schedule and help you gain more control over your symptoms.
Learn the Signs of Motor Fluctuations
Motor fluctuations involve times when your symptoms are well-controlled and times when your symptoms come back. Learn to spot the signs so you can record them in your diary.
Some Parkinson's symptoms are obvious, such as tremor, stiffness, and trouble moving. Yet not all motor fluctuations involve movement.
Also look out for non-movement symptoms like these:
- Mood changes
- Trouble thinking clearly
- Feeling restless
You can go low-tech or high-tech when you start a diary. Put the info on a piece of paper, in a journal, on your computer, or on a smartphone or tablet app.
Each day, write down things like when you took your Parkinson's medicine, the type of medication, and the dose.
Food, particularly if it has protein, can play a role in your motor fluctuations, so keep track of the meals and snacks you have during the day and note what time you ate. Also write down whether specific foods affect your symptoms.
You also want to record information about your symptoms. For instance, write down:
- What time your symptoms started and stopped
- Whether you were sleeping when your symptoms started
- What symptoms you had, such as tremor, stiffness, slow movement, and anxiety
When listing symptoms, include how intense they were (mild, moderate, or severe) and what you did to manage them.
One diary-writing tip that some people find helpful: use different color ink for notes about symptoms and medications. For instance, write about drugs in red and symptoms in blue. It helps you organize your information. And when you show your diary to your doctor, they'll be able to see quickly whether the way you feel has a connection with certain medicines.
Your Doctor Visits
Share your diary with your doctor at each appointment. Having a report of your symptoms will help them see how well your current treatment has managed your disease.
Based on your diary, your doctor might need to make some adjustments to your medicine. One option is to add more doses of levodopa each day to prevent wearing off. Or you could take your doses closer together to better control your symptoms.