The symptoms of Parkinson’s disease run the spectrum from shaking and rigid movements to small handwriting. While some symptoms are mild, others are severe enough to be disabling. Your symptoms can change, or shift to different parts of your body, as you progress through the various stages of this disease.
The variability and unpredictability of Parkinson’s symptoms make the disease harder to treat. Watching for symptoms and recording them in a diary each day can help you get more control over your condition. It can also help give your medical team the information they need to treat it more effectively.
Here are four benefits of keeping a symptom diary.
1. It can help you identify patterns in your symptoms
Do your fingers shake? For how long have they been shaking? Do they shake when your hand is at rest or when it’s moving?
By writing down your symptoms, how long they last, and what you were doing at the time they started, you can get a sense of how your disease is progressing. You’ll also learn whether any particular activities set off your symptoms so that you can avoid them.
2. It can show you how well you’re responding to your medication
Drugs like levodopa/carbidopa (Rytary, Sinemet) and dopamine agonists help manage symptoms like tremors and rigid movements. Yet these medications can become less effective over time as your disease progresses. Sometimes their effects wear off before you’re able to take the next dose, causing your symptoms to come back.
Keeping track of your symptoms will show you — and your doctor — whether it’s time to modify your medication dose or timing.
3. It can help you identify side effects
Like any other medications you take, the drugs that treat Parkinson’s disease sometimes cause side effects. Common side effects include nausea, vomiting, hallucinations, and involuntary movements (dyskinesia).
Jot down any side effects and note what drug you took and when you took it before you noticed the side effects. This can help your doctor figure out if you need to switch medications or take a lower dose of a current drug.
4. It can keep your doctor up to date on your progress
If you’ve had Parkinson’s for a while, your doctor might only see you two to three times a year. It’s hard for doctors to get a good sense of their patients’ progress when months pass between visits.
Send a copy of your diary to your doctor periodically to keep them up to date on your symptoms, medications, and side effects. This will help them identify any problems and address those problems before your next visit.
What to write in your Parkinson’s diary
You can keep your diary in a journal, on a blank piece of paper, in a smartphone app, on your computer, or on a template you print out from the Internet. Use whatever format will be easiest for you to fill out.
Every day, write in your diary:
- when you took your medication
- which drugs you took, and at what doses
- your symptoms — note the severity on a scale of one (mild) to 10 (severe)
- what you were doing when your symptoms started (walking, grocery shopping, etc.)
- the meals and snacks you ate, and at what time you ate
- whether your symptoms started after you ate
- any side effects you’ve experienced from your medication — such as dyskinesia or nausea
Your doctor will also want to know about your on-off periods. “On” periods are times when your medications are working; your movements are smooth, and you’re not shaking. “Off” periods happen when your medications start to wear off before it’s time to take another dose. During these periods, symptoms like stiffness and impaired mobility will return.
To help your doctor, you might want to mention any difficulties you’ve had with the following activities:
- bathing and other personal hygiene tasks
- staying balanced
Every so often, share your diary with your doctor, either via email, hard copy, or through an app. If your symptoms are getting worse, make an appointment to discuss possible treatment adjustments.