Expert voices: Mental health care 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 about the application of integrative medicine in the treatment of Parkinson’s disease.

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

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

What mental health challenges are unique to living with a progressive illness?

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

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

The high prevalence of mental disorders in people with chronic illnesses, particularly in people with Parkinson’s disease, with up to 60% of patients affected by depression during the course of the illness. This means that there are likely many contributing factors, one of which is adaptation to disease and functional changes. Another may be drug-induced mood disorders, and another is likely structural brain changes.

I wish they screened for mental conditions. Before all appointments at the Mellen Center, our patients are screened using the PHQ-9 [questionnaire]. This is then pre-populated in a note in their electronic health record and we can assess mood over time. Providers are able to assess their mood and can choose to treat the patient or refer them to our behavioral medicine team.

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

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

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

If a person is in a trusting and safe relationship, expressing their thoughts or feelings is healthy. They also need to realize that the caregiver/loved one is likely going through their own changes and it is just as important to listen to them. Role reversal is common: when a person who was a stay-at-home partner now returns to work, and a person who was in the workforce is now in the stay-at-home role. All of this is difficult and it is important that each side listens and shares their feelings.

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

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

Many who experience suicidal thoughts feel that they will not realistically be able to overcome such thoughts. How do you answer that?

Seek help immediately. We don’t mess with suicides. Sometimes it is important to have distance between the stimulus and the response. Thoughts can be fleeting and we need to take a minute to get that space.

It is often said that we need to process things like diagnosis and medical disappointments. But what does processing look like in practice?

It looks at the flow of experiences, thoughts, behaviors, and feelings, and how those experiences can change when information is accessed from different channels. The process will look different for each patient and we must recognize each individual’s needs and the ways in which they process the stages of their illness.


Expert Voices is a monthly series featuring a Q&A with an expert in the Parkinson’s space on a specific topic. These topics and questions were selected from a poll where we asked readers what they wanted to know more about from the experts. If you would like to submit topics or questions for consideration in a future part of the series, click here to take the survey.

Parkinson’s News Today is a purely news and information website about the disease. 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 doctor or other qualified medical professional with any questions you may have about a medical condition. Never disregard professional medical advice or delay seeking it because of something you read on this website.

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