In mid-February 2022, the Michael J. Fox Foundation (MJFF) re-played a discussion from June 2020 on depression and anxiety in Parkinson’s disease (PD). The webinar featured a panel of physicians and people with PD that included a psychiatrist, neurologist, and a music producer. The panelists addressed why and how mood changes as people age and in PD, and how to talk about the symptoms with each other and with healthcare providers.
According to the panel, mood changes – such as depression, apathy, and anxiety – may occur before and after a PD diagnosis. Mood changes may be the first signs of PD, and may begin years before the first motor symptoms of tremors and rigidity. Depression and anxiety can arise in response to life with PD or be symptoms of the disease itself. They impact movement symptoms, treatment effect, and quality of life. Therefore, it is important to tell one’s physician about symptoms of anxiety or depression.
The panel also discussed various treatment options and strategies. These included:
- Medication, such as SSRIs and SNRIs
- Cognitive behavioral therapy
- Exercise
- Social interaction and support groups
- Mindfulness and meditation practices
For more information on mood symptoms, please see these Stanford Parkinson’s Community Outreach webpages:
For a recording of this webinar, please see this Michael J. Fox Foundation YouTube webpage
See my notes below of the February 17th recording.
Regards,
– Joëlle Kuehn
“Moving with Mood Changes in Aging and Parkinson’s: A Look at Depression and Anxiety” – Webinar Notes
Speakers:
- Roseanne Dobkin, PhD, professor, Department of Psychiatry, Rutgers University
- Irene Richard, MD, neurologist, University of Rochester School of Medicine and Dentistry
- Sebastian Krys, Grammy and Latin Grammy winner, person with PD, CEO, Rebeleon Entertainment
Moderator: Karen Jaffe, MD, person with PD, founder, InMotion
Webinar Host: Michael J. Fox Foundation (MJFF)
Webinar Date: June 18, 2020
Summary by: Joëlle Kuehn, Stanford Parkinson’s Community Outreach
Depression and anxiety can:
- Arise in response to life with PD
- Be symptoms of the disease itself
- Happen throughout the PD journey
- Impact movement symptoms, treatment effect and quality of life
- Occur together or separately
Mood changes may be the first signs of PD, and may happen years before the first motor symptoms of tremors and rigidity. Many people with PD experience mood changes. Mood changes and symptoms are different for different people. Mood changes can feel isolating, but you are not alone. There are many supports, resources, and treatments to help.
Depression symptoms:
- Low mood
- Decreased interest in activities
- Sleeping too much or too little
- Thinking changes
- Weight or appetite change
- Fatigue
- Feelings of guilt, worthlessness, or suiciality
Anxiety symptoms:
- Worry that is difficult to control
- Restlessness or feeling on edge
- Sleep problems
- Difficulty concentrating
- Irritability
- Less energy
- Sudden-onset panic or anxiety attacks
What is it about PD that brings on depression and anxiety above and beyond what we see with other serious conditions? There are multiple factors involved in the onset and maintenance of anxiety and depression in PD.
Firstly, we know there are a lot of biological and neurochemical changes that result from the disease process and characterize as PD:
- We see changes in the amount and available of neurotransmitters that are available in the brain
- Also see changes or traffic jams / interruptions across the highways that connect different areas of the brain as well as some decreased brain activity in regions related to mood
Behavioral:
- In addition to the biological and neurochemical changes, there are also behavioral and cognitive factors that are implicated in mood
- Behavioral means what a person is doing and not doing in response to the various challenges they are experiencing every day
- Does the individual have enough exposure to the people, places, and things that provide them with a sense of satisfaction or meaning in their day-to-day life?
- PD can change the landscape of the day and we have to think creatively to figure out how we can expose ourselves to the experiences that will enable us to feel good about ourselves
- Could be exercising, meaningful social connection, hobbies, or leisure activities that enable them to feel good about themselves
Cognitive:
- We also consider how they are thinking about themselves, their world, their future, and what PD may or may not mean for them, and their ability to cope with the changes and difficulties that they’re going to be experiencing from time to time
- Depression and anxiety are multifactorial, the biology sets the stage, but how an individual reacts and copes with the changes and challenges that PD presents also plays a really important role
- Learning coping skills to best manage stress and negative feelings as well as becoming aware of how we’re talking to ourselves is important:
- What are the messages we’re giving to ourselves?
- Are we speaking to ourselves with the same kind compassionate tone that we would speak to a dear friend, or are we being overly critical and harsh towards ourselves?
- Often times those self-critical messages play a very important role in maintaining these negative mood states
- What are the messages we’re giving to ourselves?
Talk with your loved ones and doctors about mood changes:
- If you experience changes:
- Reach out to people you trust to share your feelings
- Discuss with your doctor, even if they don’t ask
- Get support in an online group or 1 on 1 chat
- Reach out to people you trust to share your feelings
- If you notice changes in a loved one:
- Gently broach the subject with open-ended questions such as: How are you feeling?
- Listen
- Ask how you can support
- Gently broach the subject with open-ended questions such as: How are you feeling?
Talking about it is easier said than done. Depression and anxiety are medical conditions, just like diabetes to heart disease, treat them as you would any other serious heart concern. Unlike diabetes and heart disease, the stigma that still hangs over mental health diagnosis has the ability to keep some people from asking for help.
Many options for easing mood changes:
- Prescription medication
- Talk therapy
- Support groups or other social connections
- Physical exercise
- Meditation and other mindfulness practices
Note: Not every medication works for every person, there has to be some patience and waiting to see if something is going to have an effect or not, but if it’s not working, talk to your physician on making an improvement.
Note: Telemedicine makes physicians more accessible and can allow you to see highly specialized providers that may have been out of reach before. Telemedicine is just as good as in person, and may be better because it allows them to access specialists and specialized care that they otherwise wouldn’t be able to be connected with.
Question and Answer with moderator:
Question: What were you dealing with up to the point of getting diagnosed?
Answer (by Sebastian Krys): I was diagnosed in March of last year (2019) and have been experiencing anxiety and depression since about 4-5 years ago. One of the things that wasn’t making sense to me was that I was working on my dream project, and was depressed, anxious, and moody, and things didn’t add up. It didn’t make sense why I would feel that way while taking part in the wonderful project I was working in. I have Gaucher’s disease so I knew PD was a possibility, and I started looking into it because I saw that depression and anxiety were some of the symptoms.
Question: So you have had depression for 4-5 years?
Answer (by Sebastian Krys): On paper I had no reason to be depressed or anxious, so that was a big red flag.
Question: What percentage of people with PD develop depression or anxiety, and does the incidence with the length of diagnosis?
Answer (by Dr. Dobkin): Statistics will vary based on the type of study done andthe setting it was conducted in. I would say an accurate and conservative estimate is 50% or greater. The majority of people do experience anxiety or depression that impact their day to day. With respect to anxiety and depression increasing over the course of the illness, anxiety and depression can impact people with PD at any point in their diagnosis. We see high levels from pre-diagnosis to early, mid, and late stage disease. It is a mix of biological factors that are implicated in the onset of depression and anxiety, as well as an individual’s coping response to the various challenges they are facing day in and day out.
Question: How often do depression and anxiety present together?
Answer (by Dr. Dobkin): They are highly comorbid, so they present together at very high rates. From my own clinical experience and reviewing research studies, they are probably there together half of the time.
Question: Is apathy a part of this picture?
Answer (by Dr. Dobkin): Apathy is a lack of motivation and not caring and a lack of interest. Apathy can either occur in the setting of depression as one of the symptoms, but can also occur as its own entity. Apathy can occur in PD outside of the context of depression or anxiety. Apathy is when people don’t have motivation to do things. The patients themselves tend to not complain of it, it’s usually the carepartner. We try to delve deeper and see if there is a negative mood. We don’t have a specific treatment for apathy, there are some behavioral modifications that are being studied. We do have specific treatments for anxiety and depression, so when apathy comes up, it’s important to do a full screen for depression to make sure that’s not what you’re dealing with, because that is something you can treat.
Question: If you look at this laundry list, what were some of the things that you were experiencing? Has this list changed over time for you?
Answer (by Sebastian Krys): The sleep problems, irritability, I worry all the time, mood swings, and feeling really down. For me, it really helps to exercise. I don’t take a day off for exercise, I exercise 7 days a week. Sometimes I don’t want to, but I force myself to do it because I look at it as part of my treatment, just like the medicine I have to take every day. I was an active exerciser before I had PD, but it had a different meaning to me. Now I look at it as medicine, I have to be regimented about it, I don’t give myself the option, so that is a big part of it. I also take medication for depression and go to therapy, so I feel like I have to attack this from all sides, and to talk about it with my family so people understand this is a real aspect of it. When I got diagnosed, it was a relief to understand that my depression is coming from this disease, and it’s not something else.
Question: Do you find that most PD clients will address issues of depression and anxiety directly with you or is it more likely that a care partner will be the one to initiate conversation?
Answer (by Dr. Richard): It depends on the individual and the partner. Sometimes the individual will bring it up, sometimes the partner will. Sometimes neither will. Depression is underrecognized, and because of that it is undertreated. It’s important for the patient to bring it up if the clinician does not bring it up. It’s an important screening question to ask of symptoms of depression and anxiety because they can be treated and have a huge impact on everything else.
Question: When you are having a bad day do you mind your care partner or family bringing it up or asking them to talk about it or would you rather be left to your own devices to try to fix it? Is it helpful to have your careparter and your family participate in this part of your PD?
Answer (by Sebastian Krys): I kind of let myself and them know I’m feeling down today. Just to let them understand that there isn’t anything in particular that they have to worry or be concerned about, but just know I’m having an off day. It helps me to not have to have them feel like they need to treat me any differently or whatnot. I found that there are things that trigger depression that are very trivial, and I kind of walk it back and try to figure out why I am having a bad day, and if there is something specific to trigger it. The smallest thing could trigger it. Being able to trace it back and find the trigger it is easier to get out of it. I do talk to them and my clients about it. For me it helps to have things out in the open.
Question: How can a spouse/care partner help with mood swings? How would you suggest the care partner participate in this whole issue of anxiety, depression, mood disorders?
Answer (by Dr. Dobkins): There are depressive disorders and anxiety disorders. You could have depression that is present every day for a period of time, it could be mild or severe. Some days, or parts of days, may be better than others. There is another phenomenon that is unique to people who have slightly more advanced disease and who are taking medications, generally carbidopa levodopa or Sinemet, and have fluctuations. The fluctuations are based on medication on and off times. These could be motor fluctuations or non-motor fluctuations. The non-motor fluctuations often parallel the motor fluctuations but aren’t a response to them. Anxiety and decreased mood are very common when people’s medicine wears off, and can start 5-10 minutes before the motor fluctuations do. Non-motor fluctuations could be mood swings. If this is what’s going on, you first want to identify it as such, and want to first try to level out the dopamine and fix the motor fluctuations to see if that would also fix the mood and anxiety fluctuations. The best way to manage this is to have a discussion with a neurologist.
Question: What are some medications for anxiety and depression in PD? Which antidepressants ease depression without worsening movement symptoms?
Answer (by Dr. Richard): Although depression and anxiety are usually coexisting, depression and the treatment of depression has been better studied. Anxiety is about 10 years behind. With depression, what we know based on SAD PD studies and others, frequently-used antidepressants, the serotonergic specific ones SSRI’s, as well as those that affect both serotonin and norepinephrine called SNRI’s. We looked at one that happened to pick Paroxetine as our SSRI and Venlaxine as our SNRI and it was proven that each of those medications was more effective than our placebo on every single measure of depression. It was a clear-cut study despite a high placebo response and showed this medication class can have positive effects. Other medications would include sertraline (Zoloft), fluoxetine (Prozac), Celexa, although that needs to be taken carefully in people over 60. Some SNRI’s to use would be Venlafaxine, or Effexor. I tend to start with an SSRI like Paxil. If despite optimizing the dosing it doesn’t work, I will then move to an SNRI.
Older medications called tricyclic antidepressants such as nortriptyline are very effective, but are associated with less tolerable side effects and a higher potential to cause heart arrhythmias. Another possibility would be Wellbutrin, but it hasn’t been specifically studied for depression in PD, but we do try it. Pramipexole, which is a dopamine agonist medication, has some antidepressant effects.
For anxiety, SSRIs and SNRIs are effective in the non-PD general population. In PD, it doesn’t improve anxiety measures, at least in studies where people do not have severe anxiety. Buspirone was studied on the PD population and it was not as well tolerated and did cause worsening of motor function at relatively low doses for some people. The worsening motor function stopped when the medication was stopped. Benzodiazepines like Xanax are commonly prescribed but do have side effects on balance and thinking.
Answer (by Dr. Dobkins): It is important to emphasize that in addition to all the prescription medications just mentioned, there are also non-medication options that people can use either in a self-help format or ideally in collaboration with a licensed clinical psychologist or social worker to help them to boost their mood. I’ve studied cognitive behavioral therapy for depression and anxiety in PD which we have seen works. Cognitive behavioral therapy is drilling down on our thought process and what we are and aren’t doing in response to the challenges that we are facing. It is important to be aware of the internal dialogue and how they are interpreting what is going on in their world day in and day out. The behavioral part is also important. It’s important to exercise every day, don’t have to be too strenuous, just whatever you can safely do. It’s also important to have some kind of social interaction every day with other individuals who you actually like interacting with. This doesn’t have to be hosting a dinner party, it could be small changes like answering the phone when it rings, or responding to your emails and text messages the day they come in rather than a week later. Set a daily goal around activities that are associated with meaning, reward, pleasure, and satisfaction. This could be music you like to listen to, or a certain book you may enjoy reading. People may also benefit from meditation techniques and relaxation skills such as deep breathing or visualization or muscle relaxation exercises 10-15 minutes, twice a day.
Answer (by Dr. Richard): When people are diagnosed with PD, people are told to take medications and come back. It can be an isolating disease because services needed for PD haven’t really been developed across the board as there is for cancer patients where there is a team of people. In PD we haven’t really developed a standard of that. It’s important in treating PD to have a multidisciplinary team, even if it isn’t all under one roof or clinic. It’s also important to know that some medications, such as some atypical antipsychotics (not used for psychosis), worsen parkinsonisms and PD motor function, so that needs to be taken into consideration when prescribing a medication.
Question: Did you have problems finding medications that are effective for your anxiety and depression?
Answer (by Sebastian Khys): I did. Before I knew I had PD I started taking medication and it made me feel nothing, and that’s very bad for someone trying to make music. I felt fine but everything was fine, it stunted me. I went off the medication and started Mirapex, it didn’t work for me for the motor part, but it did work for me for depression and anxiety.