During this month's meetup, our panelists discussed their experiences navigating non-motor symptoms of Parkinson’s like apathy, pain, and cognitive impairment. For the majority of our panelists (and for many people with Parkinson’s), non-motor symptoms outnumber motor symptoms and tend to appear years before motor symptoms. The panelists also highlighted how non-motor symptoms are often much more challenging on a daily basis than motor symptoms.

Read on for a summary of the conversation and to access a recording of the meetup. If you haven’t attended our meetups live, register to receive the link to do so.

Common non-motor symptoms of Parkinson's include constipation, depression, anxiety, apathy, cognitive changes, nOH, fatigue and sleepiness, sleep disturbances, pain, speech and swallowing concerns, and more. These symptoms fall into three categories: emotional, cognitive, and autonomic. Our panelists discussed non-motor symptoms that fall within all three categories, and they shared tips and tricks for how they manage these symptoms.

Apathy

Like anxiety and depression, apathy is a mood-related symptom of Parkinson’s. It is one that can be hard to manage because, by its very nature, it involves having low interest in taking action. When dealing with apathy, you may not feel up for managing your symptoms--including apathy.

Apathy is a loss of motivation, desire, and interest. It can occur separately from anxiety or depression and may be misinterpreted as laziness or lack of initiative. Though the cause of apathy in Parkinson’s is unclear, research suggestst that it’s due to a chemical imbalance and structural changes in the brain.

Taking action to manage apathy is essential to living well with Parkinson’s. Here is some advice from our panelists about how they navigate this common symptom:

• Put things on a calendar. When you’ve already scheduled activities, it can be easier to get out the door and do them.


• Find ways to stay accountable to yourself and others. If you have made plans to meet a friend for an exercise class, you’re less likely to skip it since you won’t want to let them down. Schedule a phone call with someone on a regular basis, or join a support group with members who will help hold you accountable for showing up.


• Participate in activities even when you don’t feel a lot of excitement or passion about them. You’ll still reap the benefits of community and social interaction, and you may find that once you get there, you’re glad you went. “Bring the body, and the mind will follow,” the panelists said.


• Consider registering for an event that requires training, like a bike ride. Having something on the books that you can train for and look forward to can help keep you motivated. You might also book a vacation that you can plan for and feel excited about.


• On the days when you just can’t get to the activities you had scheduled, give yourself grace. Don’t judge yourself. As Kat said during the meetup, “Life doesn’t end just because you didn’t check off that item on your list.”


• Keep a list of places where you feel soothed or comforted--a park, a bath, a nook in a library--and try to visit that place when you’re feeling especially apathetic.


• Don’t stay stuck in the mindset of “I don’t care, I don’t care, I don’t care.” Try to break that cycle. Step outside. Splash cold water on your face, or take a cold shower. Change your environment somehow. Although it sounds simple, sometimes a subtle shift can be enough to break the cycle.


• Seek out counseling or therapy if that feels right for you.

If you or your care partner notice that you’re experiencing apathy, talk with your physicians, and ask for a referral to a mental health provider if necessary. Your physicians may be able to adjust your medication regimen in ways that can help manage apathy, and therapy may also prove to be a powerful treatment.

Cognitive Challenges

Other non-motor symptoms of Parkinson's our panelists discussed relate to cognition and cognitive decline. Several mentioned moments when they have an inability to “find words,” and others highlighted speech issues tied to executive function, such as keeping up with the cadence and pace during a very active discussion.

Many people with Parkinson's experience cognitive changes. Often these involve slowed ability to think about and process information. One positive note is that the progression of cognitive challenges tend to ebb and flow, and they can be managed proactively. Our panelists shared advice about how to do this:

• Talk with your clinicians about your concerns.


• Develop a “toolbox” you can rely on in those moments when you can’t find the words you want to say. For example, Larry said, “If I’m in a meeting and need more time to answer a question, I rephra