The Confident Patient: Parkinson's Treatment Guide

The ConfidentPatient:A Doctor Discussion GuideAbout Parkinson’s Treatment

Speech bubbles overlap with a discussion guide

When managing isn’t enough

Living with Parkinson’s disease often means navigating symptoms that shift day to day. One moment you may feel “on,” able to move and function more like yourself – and the next you’re “off,” slowed in ways that make everyday tasks unexpectedly difficult. And these changes can reach far beyond movement, affecting things like speech, swallowing, vision, sleep, and balance.

If managing symptoms or taking oral medications throughout the day is becoming challenging, it may be time to talk with your doctor about other options.

A barrier blocks symbols of leisure activities and family connection

Adjusting your approach

As symptoms change, they can impact so much. They can feel like a roadblock, getting in the way of the things you enjoy – your favorite hobbies, activities you love, and time with family and friends. Plus, juggling medication schedules with daily life can leave you feeling tired and frustrated.

That's why sharing your experiences with your doctor can make all the difference in your treatment plan. The more you talk about your symptoms and what matters most to you, the better you'll both be able to work together on a plan that's best for you.

Questions for your neurologist

Do you have a follow-up appointment approaching? There’s no better time to catch up with yourself, take stock of what’s changed, and get your questions in order. By partnering with your healthcare team, you can gain a clearer understanding of your Parkinson’s journey and map out the appropriate next steps for your care.

Not sure where to start? These questions can help guide an honest conversation.

Is this progression?

How do I know whether I’m experiencing progression?
Could my symptoms be progression even if they come and go?
If we don’t act now, could my symptoms get worse?
What should I do if that happens?

Exploring treatment options

My symptoms are harder to manage even with treatment. What’s our next move?
Are there treatments besides daily oral medications that could help manage my symptoms?
What are the infusion medication options currently available, and how do they work?
How are infusion medications different from oral medications?

Ongoing monitoring

How do we decide if it’s time to make a treatment change and what does that process look like?
How will you evaluate whether my treatment is working or not?
How can I keep doing the things that matter to me while managing treatment?

Coming prepared with questions like these can help you get the most out of your doctor’s appointments and ensure your care is keeping up with you and your busy life.

Symptom Check-in

What’s new with you?

Symptoms can come and go throughout the day. You might also notice changes you haven't experienced before. Let’s check in and see how you’ve been feeling lately.

In the last month, have you experienced a worsening of any of the following?

☐ Stiffness, slowness, or balance issues
☐ Tremors, spasms, or twitches
☐ Trouble speaking or swallowing
☐ Pain
☐ Fatigue
☐ Difficulty sleeping
☐ Challenges with memory or thinking
☐ Vision or eye problems
☐ Bladder or bowel changes
☐ Depression or anxiety

The Check-up

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Talking about what's changed

Describing symptoms to your neurologist can sometimes be hard to do. Here are some ways to share your experience:

“I’m experiencing new symptoms that I haven’t had before. Could these symptoms be related to progression?”
“Daily tasks that used to be easy are now harder. Can we talk about that?”
“Staying active is really important to me. How can I get more reliable 'on' time so I can keep doing the things I enjoy?”
“Even with treatment, my symptoms seem to be getting worse. Is it time to think about switching to a different treatment option?”

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