[Webinar Recording] August 2024 Living With Parkinson’s Meetup

All people experience a range of emotions and moods that ebb and flow as circumstances change. When you’re living with Parkinson’s, however, your experience with emotions–and their impact on your overall mood–can seem magnified.   

How is your mood related to your medication regimen? 

For some people with Parkinson’s, including several of the panelists, mood-related symptoms often seem connected to medication timing and ON/OFF periods. In part, this is because mood can be impacted by other symptoms. For example, if you experience more freezing of gait during certain times of the day (like when your medication is wearing off), you may feel more irritability and frustration during those times as well. 

Kevin explained this another way. He said that when everything is going well in terms of symptom management, the ups and downs of life (and Parkinson’s) are easier to cope with. In contrast, when your Parkinson’s feels less managed and under control, the ups and downs feel more intense, and your mood is negatively impacted. 

It’s important to remember that people respond differently to medications, and some medications can affect mood more than others. If you take Parkinson’s medications, consider tracking your symptoms (with an app, on one of our worksheets, or simply in a notebook) and how they fluctuate throughout the day based on the timing of your medications. Pay attention to how you feel during different points in the day, both in terms of outward symptoms and mood-related symptoms, and share with your care team what you observed. If a medication change could help with symptom management, your physician can explain different options.  

How can you manage mood-related symptoms? 

The first step to managing mood-related symptoms is to acknowledge how you feel. Then, take a mental step back and ask yourself if the feeling is likely related to Parkinson’s. For example, if you are taking a walk, have a freezing episode, and then feel irritable, there’s a good chance that your irritation is related to the freezing. For some people with Parkinson’s, recognizing the “why” of an emotion helps calm the intensity of that emotion. One viewer mentioned in the chat, “If I can understand why I feel a certain way and can recognize that the feeling is Parkinson’s-related, it helps me mentally.” 

Exercise can also be hugely beneficial in regulating mood, and in improving your overall quality of life in general. Chris and Larry both shared how invaluable exercise is for helping them manage Parkinson’s symptoms including those related to mood, and research supports their experiences.  

The panelists also stressed the importance of mindfulness and gratitude when it comes to managing mood. Showing yourself loving kindness, especially first thing in the morning, can be a powerful tool. So, too, can accepting the way you feel in the moment. Shan said that “learning to meet yourself where you are in Parkinson’s,” can help you manage mood-related symptoms. “I tell myself, ‘This is where I’m at today, and I cannot change that. So how can I meet myself where I am today?’” she said.  

Kevin advised listeners to try meditation. In moments of heightened emotions, try to find a way to be mindful, like taking a 10-minute timeout to go to a quiet area and practice mindfulness exercises. 

If you can’t step away while you’re feeling trapped by a strong emotion, Larry suggested trying to shift your thoughts and focus on something other than what you’re feeling so intensely. Sometimes, this intentional act of shifting focus can help regulate an emotion.  

When it comes to mood fluctuations related to living with Parkinson’s (rather than symptoms that are caused by Parkinson’s), there are different coping strategies you can explore. Here are some that have helped our panelists when someone says something about Parkinson’s that rubs them the wrong way: 

• Be intentional about assuming good intent: Remember that people are not willfully trying to make you feel upset.

• Spread awareness and be an advocate.

• Try to live with patience, humility, and grace.

• Educate someone about what Parkinson’s is like for you; but remember that it’s not your job to educate everyone, everywhere about Parkinson’s.

• Remember that putting yourself out there (as a person with Parkinson’s) can be scary, but often it allows you to solve problems and work toward solutions.

What can care partners do to help? 

Care partners can be significantly impacted by their person’s mood-related symptoms. The panelists offered advice on what care partners should remember, both during intense emotional moments and during calm times. 

• Recognize that your person with Parkinson’s may experience more mood changes than they did before they were diagnosed.  

• Have the conversation about mood symptoms when your person with Parkinson’s is feeling calm, not during moments of heightened emotions. 

• Try to maintain a sense of humor.

• “Don’t take it personally. It is so not about you,” Robynn said. 

Remember that although emotions and moods will come and go, there are actions you can take every day to manage negative feelings and live well. If your mood seems to have gotten worse and/or it often keeps you from doing activities you once enjoyed, talk to your care team. There are many forms of therapy, as well as other interventions, that can help.  

Next Meetup 

We hope you’ll join us for our next meetup on September 19, 2024! 

The panelists always welcome your questions. Please send them using this form or by emailing blog@dpf.org. 

Additional Resources 

Emotional and Mental Health for Parkinson’s 

Pseudobulbar affect (PBA) and Parkinson’s 

​​Medication Adherence: When You Take Your Medication Matters 

Full Catastrophe Living by Jon Kabat-Zinn

Parkinson’s disease: Still waiting for a cure  

Glued to the Floor: Parkinson’s Motor Symptoms and Exercise 

The Victory Summit® Virtual Event: Mental Health and Wellness