November 30, 2023

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Expert Voices: Caring for Mental Health With Parkinson’s Disease

In this installment of our “Expert Voices” series, Parkinson’s News Today asked psychologist Amy MB Sullivan to answer some of your questions related to implementing integrative medicine in Parkinson’s disease care.

Sullivan is a board-certified staff clinical health psychologist and the director of behavioral medicine at the Mellen Center for Multiple Sclerosis Treatment and Research at the Cleveland Clinic. Sullivan received her doctorate from Argosy University-Atlanta, worked her internship at the University of Cincinnati, and had a fellowship at the Cleveland Clinic in pain medicine. She specializes in multiple sclerosis mental health care and is concerned about physician and caregiver self-care, burnout, and psychological health. 

A headshot image of a woman with long blonde hair. She wears a white coat with a black shirt beneath, as well as a necklace.

Dr. Amy Sullivan cares about physician and caregiver self-care, burnout, and psychological health. (Photo courtesy of Amy Sullivan)

What mental health challenges are unique to life with a progressive disease?

I strongly utilize the grief and acceptance work that has been adapted from Elisabeth Kübler-Ross with my patients, as these are patients who are faced with a functionally, cognitively, socially, financially, and emotionally debilitating disease, sometimes at a very young age. This model theorizes that people move, in no particular order, through and in between different stages of grief (anger, denial, depression, bargaining, and acceptance/adaptation). Life without a chronic disease is difficult; life with a chronic illness adds another layer of complexity.

What do you wish more doctors would realize about the mental health challenges of living with Parkinson’s disease?

The high prevalence of mental health disorders in people with chronic disease, especially as it relates to people with Parkinson’s, with up to 60% of patients being affected by depression during the course of the disease. This means that there are likely many contributing factors, one being the adjustment to disease and functional changes. Another could be medication-induced mood disorders, and another is likely changes in the brain from a structural perspective.

I wish they would screen for mental health conditions. Prior to all appointments at Mellen Center, our patients are screened using the PHQ-9 [questionnaire]. This is then prepopulated into the note in their electronic health record, and we can assess mood over time. The providers are able to assess their mood and can choose to treat the patient or send the person to our behavioral medicine team.

How can caregivers help a loved one who’s experiencing loneliness from social avoidance related to their diagnosis or symptoms?

Listen and empathize. Don’t judge. Communication skills are important to all relationships, and even more so with a relationship which now has the uninvited guest of a chronic illness. Caregivers have to remember to take care of themselves and be able to communicate effectively with the person they’re caring for.

Parkinson’s can make a person feel like a burden. What tips do you have for a patient who fears expressing new limitations, such as those caused by fatigue, to their loved ones? 

If one is in a trusting, safe relationship, expressing their thoughts or feelings is healthy. They also have to realize that the caregiver/loved one is likely experiencing their own changes, and it’s equally important to listen to them. Role reversal is frequent: where a person who was a stay-at-home partner is now back at work and a person who was in the work force is now in the stay-at-home role. All of this is difficult, and it is important for each side to listen and share their feelings.

What advice do you have for someone who feels they must be “tough” for their family and not show the toll of the disease on their psyche?

I think it’s really tough. I always encourage patients to be comfortable sharing their emotions, but it also depends on having the right support system in place. Having that communication between patients and caregivers is critical.

Many who experience suicidal thoughts feel that realistically they won’t be able to overcome such thoughts. How do you respond to that? 

Get help immediately. We do not mess around with suicide. Sometimes it’s important to get space between stimulus and response. Thoughts can be fleeting, and we need to take a minute to get that space.

It’s often said that we must process things like diagnosis and medical disappointments. But what does processing actually look like, practically? 

It looks like the flow of experience, thoughts, behaviors, and feelings, and how these experiences may change as information is accessed from different channels. The process is going to look different for each patient, and we have to recognize each individual’s needs and the ways they process the stages of their disease.

Expert Voices is a monthly series involving a Q&A with an expert in the Parkinson’s space about a specific topic. These topics and questions are curated from a survey in which we ask readers what they want to learn more about from experts. If you’d like to submit topics or questions for consideration in a future installment of the series, click here to take the survey.

Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.