In late June, the Parkinson’s Foundation hosted a panel on what coping skills and adaptations people living with PD and their care team can use to make things easier. Stanford Parkinson’s Community Outreach attended the webinar and are sharing our notes.
The panel consisted of two members living with PD, and three professionals in Parkinson’s research and care. They discussed the impacts of Parkinson’s on people’s emotional and mental health, and ways to make life easier while dealing with depression, demoralization, and/or apathy.
The panel members said the most effective ways to improve mental and physical health while living with PD are to
- find or build a social support system
- develop exercise routines until they become habits
- practice self-care activities and find meaning in life.
A recording of the webinar is available on the Parkinson’s Foundation’s YouTube channel.
You can find resources on related topics on the Stanford Parkinson’s website.
Below are my paraphrased notes from the panel discussion, and the question-and-answer session.
“Actively Pursuing Well-being in PD”
Paul French, person with Parkinson’s
Lou Eisenbrandt, person with Parkinson’s
Gregory Pontone, MD, MHS, Johns Hopkins
Terry Ellis, PhD, PT, Boston University
Bradley McDaniels, PhD, University of North Texas
Franchino Porciuncula, PT, DScPT, EdD, Boston University
Host: Crista Ellis, Parkinson’s Foundation
Webinar Date: June 21, 2023
Summary by: Jordan Dagan, Stanford Parkinson’s Community Outreach
[Editor’s note: The following notes are paraphrasing of the topics of discussion, and contributions by each panel member. Time stamps are given for major topic transitions during the YouTube recorded webinar.]
(3:50) WEBINAR START
Paul French was diagnosed with Parkinson’s in 2006 at the age of 49. He worked for 10 years after his diagnosis before retiring. He worked as a circuit designer, and enjoyed running for much of his life.
Greg Pontone is a psychiatrist with specialty training in movement disorders. He is the director of the neuropsychiatry program for Parkinson’s at Johns Hopkins University.
Bradley McDaniels is a rehabilitation psychologist and counselor at University of North Texas.
Lou Eisenbrandt has been living with Parkinson’s for 21 years. Her development of PD is suspected to have been influenced by exposure to Agent Orange, a chemical herbicide in use when she worked as a nurse in the Vietnam war, as well as a genetic factor.
Terry Ellis is a physical therapist and faculty member at Boston University. She is the director of the center for neurorehabilitation. She specializes in Parkinson’s disease, and is passionate about the importance of exercise for those with PD.
(5:50) DISCUSSION START
Lou began by saying that the emphasis on physical symptomology when researching and treating PD overshadows the very real impact of PD on mental health. She struggled with depression for a significant period after receiving her PD diagnosis, and shared that she wasn’t depressed because she was sad about her Parkinson’s diagnosis, but because her PD disrupted her neurochemistry.
(7:55) RECOGNIZING MOOD CHANGES
Paul agreed that many people don’t like to talk about the mental and emotional aspects of having Parkinson’s. He said that in a support group he attended, he learned that emotional dysregulation is a common experience for many people with PD. He shared that he found himself bursting into tears over events that didn’t make him very sad.
Bradley brought up the concept of demoralization, and discussed the differences between demoralization and depression. He defines demoralization as an inability to cope with a serious change in one’s life, characterized by feelings of helplessness or hopelessness, and a loss of self esteem. He said that after any new diagnosis, there is a period of adjustment as people process the loss of what they believed their life would be. The treatment for depression because of a neurochemical imbalance due to Parkinson’s is very similar to treatments for other causes of major depression. Bradley is currently doing research on the impact of meaning in life on depression, demoralization, and other mental health troubles for people with PD.
Paul noted that PD is a movement disorder, not a mental health disorder, but that the connection between mind and body has a big impact on quality of life for those living with PD. He turned the conversation towards the impact of exercise, as having a positive effect on both mind and body.
(10:35) UNDERSTANDING THE MIND-BODY CONNECTION
Terry added that it’s difficult for people to exercise not only because of their movement disorder, but because of the change in routine adding exercise brings, and the fact that people generally don’t enjoy exercise for its own sake. She advised people to examine why exercise is important to them, on an individual level, and to find exercise they genuinely enjoy. If you make the exercise personalized, it won’t feel so overwhelming.
(11:55) MAKING EXERCISE WORK FOR YOU
Paul added that confidence in one’s own ability to change their outcome, including control through actively exercising, can improve feelings of helplessness.
Greg shared that he has been collaborating with Bradley, and that Bradley noted to him that there are many tools that those with other chronic illnesses use, but that these don’t usually get shared with those with PD. He said that self-efficacy, and the belief that one can change their situation, greatly improves day to day life. He noted that he sees many people with PD take a passive role in their own care post-diagnosis, but that his goal would be to incorporate more agency into people’s care plans, empowering them to make their own choices.
Lou said that it took her a long time to realize the role apathy was playing in her mood and functioning after her Parkinson’s diagnosis. She said she wondered if her difficulty was due to fatigue or a sense of inevitability, but that apathy was a much better descriptor. When tasks are daunting, Lou talks to herself or to her care partner, who is her husband. The tone she takes with herself is firm and encouraging, making sure that she strikes a balance between letting herself rest and setting concrete goals she can achieve. She shares that giving herself gentle reminders, or having her husband help provide reminders, helps her get through tough times.
Paul added that assistance from others can make a huge difference in overcoming apathy. Structured activities like an exercise class or support group can add accountability, and provide opportunities for social time.
(17:00) STAYING ON TRACK, WITH A LITTLE HELP
Terry encouraged care teams to use scheduling and social support for establishing and maintaining exercise routines. Exercising at the same time each day, and in the same way, can help create habits out of exercise. This reduces the impact of procrastination, anxiety, and unhelpful self talk on one’s mental health, and can increase self efficacy and confidence. Making exercise a habit allows people to relax the mental effort they spend making the decision of how and when to exercise.
Paul offered that people often find exercise unfulfilling, even if they know it will help them. He asked Bradley how people can connect to meaning in their lives.
Bradley confirmed that finding meaning in life lowers experiences of apathy. He said the way to find meaning in life is to identify activities you already do which make you happy and which you truly enjoy. For most people, social life, work, and spirituality are three overarching areas they find meaning in life. He said people with PD often gradually withdraw from their work and their social lives, even as their roles at home also change. This can cause feelings of loss and uncertainty. As a preventative measure, or as a treatment, he suggests finding meaning in contributing time to organizations, a class, spending time in nature, or hobbies. Whatever you like, do more of that! Do those activities in the company of others when you can, as helping others contributes greatly to finding meaning in life.
Lou said that growing up with five siblings, she had to be responsible and resilient. Her time in the military and as an emergency room nurse also reinforced her ability to push through hard times.
(24:35) TAP INTO YOUR INNER STRENGTH
For Lou, the hardest part of coping with depression was the feeling of hopelessness, which often brought up thoughts like “my life is over,” or that there was no hope for the future. She said that once she convinced herself that those thoughts were not true, things got easier. She also added an antidepressant to her care plan, and has been taking it for 20 years. Sticking with what works is important to her. She advised others with PD to find examples of those who are making active efforts to thrive even while living with PD.
Paul added that though surrounding oneself with people who have a positive outlook can help, there are some realities that must be faced. He said that his work as a circuit designer gave him a problem solving perspective. When faced with PD as an unsolvable problem, he focuses on the parts of his life he can make a positive difference in. This helps him have agency over his disease progression and how he copes in day to day life.
Greg shared that there are treatments people can use if there’s a barrier to thinking positively. Major depression often requires a combination of therapy and medication for treatment to be successful. He clarified that apathy is experiencing a lack of initiative to engage with activities, even if the patient knows that the activity is important. Medicine doesn’t always help with apathy, though dopamine agonists can help some. He said that instead, having daily structure can add external initiative, and that habit forming adds “mini-structure.” Greg encouraged people with PD to develop habits that will help them early on, while they still have much of their functioning. He shared two books that may help people form habits:
“The Power of Habit,” by Charles Duhigg, shares how much of an impact habit forming can have on wellbeing and making daily life easier.
“Atomic Habits,” by James Clear, reads like a manual for how to form habits by breaking goals down into smaller and more achievable pieces.
(31:50) BUILDING A SUPPORT TEAM
Paul closed the discussion by emphasizing that though people try to do their best on their own, a support team is also essential. Having a group of mentors, friends, therapists, doctors, family, and loved ones really does help almost every aspect of living with PD. He shared that for him, trying again even after a failure was a very important lesson to learn. He summarized the discussion by listing major factors that can help people actively pursue wellbeing while living with PD: exercise, a positive outlook and faith in a positive outcome, and reinforcing self-efficacy and self determination.
The discussion ended at (33:50).
Questions and Answers
[Editor’s note: Franchino Porciuncula joined the Question and Answer session. Franchino Porciuncula is a research scientist at the Center for Neurorehabilitation at Boston University. Terry was unable to attend.]
(34:43) Question for Bradley: How effective is meditation?
Answer by Bradley: Evidence supports that it’s helpful. The challenge most people have is not sticking with it, especially if they think they’re “doing it wrong.” Meditation requires practice and habit forming in order for it to be effective. Apps can help you learn meditation, and maintain the structure needed.
(36:18) Question for Paul and Lou: Can you share some of the tools you use for overcoming apathy?
Answer by Lou: Talking to herself helps Lou, both with managing apathy and with moments where she freezes. Lou talks to herself in a firm tone, much like the tones she heard in childhood. She shared that when she freezes, she counts out loud to herself, and this helps her concentrate and keep moving. She makes an effort to surround herself with people who share her struggles, who help each other, and who model positivity to each other.
Answer by Paul: Paul writes things down to stick with doing them, especially since checking them off a list helps motivate him. Structured appointments that he must keep help hold him accountable for finishing what he starts.
(40:10) Question for Franchino: A particular patient with PD loves to exercise, but her PD affects her balance and makes this difficult. What can she do about this?
Answer by Franchino: There are many different kinds of exercise. People may find that their disease progression may make it difficult to form and maintain habits for exercise. He suggests a stationary bike instead of bicycling, or other stationary exercises. He encourages people living with PD to consult with a physical therapist to find exercises that are safe for them to do, or for ways to adapt exercises they already enjoy.
Answer by Crista: Crista shared that it’s important to “meet yourself where you’re at.”
Answer by Paul: Paul shared that ping pong can be a great exercise for those with trouble balancing.
(43:00) Question for Greg: Please share more about depression as a result of chemical imbalance with PD, rather than as a result of sadness because of the diagnosis.
Answer by Greg: Experiencing a variety of negative feelings after learning of a PD diagnosis is normal, and an appropriate response to feeling a loss or any other bad news. Depression can overlap with these negative feelings, but depression interferes with functioning, and doesn’t go away after a certain amount of time. Depression also doesn’t necessarily feel explicitly like sadness; it can mean decreased enjoyment of what you once found engaging, and withdrawing from previous activities and relationships.
Answer by Bradley: Demoralization and depression are also different from each other. Depression is a loss of enjoyment with life, whereas demoralization* is an inability to cope with changes in life. With Parkinson’s, changes along the journey of disease progression often correspond to changes in a person’s feelings. The feelings you experienced just after the diagnosis may be different than the feelings you experience as you lose more function. It can feel like a rollercoaster ride. Having people around you who can observe your functioning and feelings, and how they are affected, can help.
*Used in the context of psychotherapy by Dr. Jerome Frank in 1961.
Frank, Jerome D., and Julia B. Frank. “Demoralization: The Common Characteristic of Persons in Psychotherapy.” Persuasion and Healing: A Comparative Study of Psychotherapy, 3rd ed., Johns Hopkins Press., Baltimore, MD, 1961, pp. 34–44.
(47:00) Question for Lou: How did you deal with the loss of your ability to drive?
Answer by Lou: Lou’s family sat down with her after several instances of unsafe driving, and let her know that she would have to let her husband or friends be designated drivers. Lou was having trouble judging distances between her car and outside objects, because of the spatial perception issues that come with Parkinson’s. She said the first day was the hardest for her, but today she doesn’t mind the loss of that privilege very much. It’s one more thing she doesn’t have to worry about. She said that not driving does limit her social time, and she misses the ease of access to errands and groceries. Lou encouraged people living with Parkinson’s to consider their own safety, the safety of their passengers, and the safety of other people on the road with them. She advised that people set up a transport support system early, so they have it when they need it.
Answer by Paul: Paul added that it’s rare your neurologist or other doctor will tell you when it’s time to stop driving. It’s usually friends and family who observe a loved one’s driving, or self observation, that leads people to stop driving.
Answer by Crista: Crista added that for extra peace of mind, and/or a more subjective evaluation, an occupational therapist can help evaluate a person’s driving. Paul added that having an occupational therapist confirm that you’re safe to drive can also be helpful for liability, in case of an accident.
(53:10) Question: How can caregivers know when and how to push their loved one to pursue wellbeing? When should they back off?
Answer by Lou: Nudge rather than push. Those living with Parkinson’s should realize that the changes that come with disease progression are difficult for their care partners, too. Lou suggested coordinating schedules with your loved one, so that both of you can continue doing activities you enjoy. Better yet, do those activities together!
Answer by Greg: Before the confirmation of a PD diagnosis, each person in a care partnership had a particular role, and those roles will change as the caretaker takes on more responsibility. Sometimes the role changes conflict and feel very difficult, especially if the person who acted as leader before is now the one living with PD. Remember that mutual respect is key, as well as communication. Greg advised care partners to communicate explicitly and consciously about each person’s independence.
Answer by Bradley: Rather than push, pull. Say “let’s go,” as much as you can. PD affects everyone in a family, and coping skills can help everyone. Bradley encouraged families with a loved one with PD to continue developing the relationships between them.
Answer by Paul: Paul reminded viewers that people living with PD may have difficulty making decisions, and that deciding on plans for activities ahead of time can help. Doing that planning helps the care partner say “let’s go,” rather than “do you want to,” and lets the person with PD conserve their energy. Every care partner or supportive relationship is different, just like each person’s PD symptomology is different. Schedule check-ins together, and discuss the care plan with your doctor.
Answer by Franchino: Franchino reiterated that habit forming can make actions more automatic, requiring less conscious thought. He said that reminders from people in a loved one’s care system can prompt them to follow through on those automatic actions.