Something on your Mind? Mental Health & Parkinson’s disease

How might Parkinson’s affect your mental health?

Mental health is defined as emotional, psychological and social well being and is an essential part of everyone’s overall health. Mental health is often spoken about these days in the popular press and is particularly important to understand as it relates to someone with Parkinson’s disease (PD).

As with every symptom of PD, there is a huge amount of variation between people when it comes to mental health. There are some people with PD who have no mental health concerns and others whose main difficulties stem from depression, anxiety, psychosis or cognitive issues, which all can be non-motor symptoms of PD. Most people with PD deal with some degree of one or more of these four elements.

Other factors that may affect your mental health

Other features of PD that contribute to mental health issues include sleep disorders, fatigue and apathy. To complicate matters further, in some cases, PD medications can contribute to mental health problems, for example, by contributing to psychosis or compulsivity.

Of course, each person’s mental health does not exist in a PD vacuum, but rather reflects his/her baseline personality, ingrained coping mechanisms, and life circumstances – both uplifting and stressful- beyond PD, including family and work.

APDA has educational supplements on depression and cognitive changes that you can access for more information on these topics.

When to seek help for mental health issues

One question that readers may have is – when do I seek help for my mental health issues and when do I consider my concerns just to be a normal part of life? There is no one right answer to this question, but as a rule, if the mental health issue that has arisen is interfering with your normal level of function, then it is time to seek out medical advice. Most issues can be improved with counseling, other lifestyle adjustments, changing your PD meds, or adding other medications, so there is no need to struggle in silence.

Conversations from people with Parkinson’s about their mental health

Recently, I talked about mental health with two thoughtful people who are living with PD, to get their perspectives on the issues that they deal with and the strategies that work for them. Their approaches are by no means the only ones. There are as many different ways to maximize your mental health as there are people with PD. But hearing how other people deal with their challenges can help you craft ways to deal with yours.

David: on anxiety, sleep and focusing on the positive

David (name changed to protect privacy), a 74 year-old man with PD diagnosed two years ago, has been dealing with anxiety and depression for decades. “I was in therapy as a teenager and young adult for issues of anxiety and depression.” But about five to six years ago, the anxiety worsened, and he sought out the care of the same therapist he saw when he was in his thirties.

The intensification of his anxiety preceded his diagnosis of PD by a few years, a relatively common phenomenon in which particular non-motor symptoms of PD appear before the motor symptoms. In addition, since his diagnosis of PD, he started noticing some cognitive issues – specifically trouble with his memory and word-finding difficulties.

Initially, controlling the anxiety and dealing with the cognitive changes were very difficult for David  – and the two issues were inter-related for him. A word-finding difficulty would inevitably trigger anxiety. “I used to go crazy because I couldn’t think of particular words.” And that anxiety would then make it even harder to find the right word.

More recently, with the help of his therapist and his optimistic and upbeat wife, he has taken a different approach. He focuses on the positive things that he incorporates into his life – exercise, long walks, physical therapy and music. “I feel like I am doing everything I can do to help myself – and it is working. I am in a better place [from a mental health perspective] than I have been for years”. “I am now less concerned if I can’t think of a word. I don’t harp on it. I have accepted [this problem] and I don’t spend a lot of time worrying about it. If the word doesn’t come out, I skip it and move on. Usually, the person I am talking to gets what I am saying anyway.”

He can’t emphasize enough the importance of a good night’s sleep. He used to get four hours of restless sleep. Now with the help of his more relaxed view of life and current medication regimen, he is able to get 6-7 hours of restful sleep and that has led to a major improvement in his quality of life.

Key lessons that David can share about his mental health include:

  • Focus on the positive things that you are doing for yourself
  • Acceptance of elements of your condition that you can not change can reduce stress and improve quality of life
  • Good quality sleep can be essential for your mental health

Kathy:  On anxiety, going it alone, and being kind to yourself

Anxiety is also the biggest mental health challenge for Kathy (name changed to protect privacy), a 72 year old woman with PD diagnosed 4 years ago. Her mental health concerns are deeply influenced by a major external stressor, namely an adult child who is facing an illness of her own. Kathy was always a very active and capable person, and remains so, but PD is starting to cause some physical limitations for her. She wants to help her daughter as much as she can, but has begun to realize that she can’t do everything she used to be able to do. This is extremely frustrating, because not only must she accept her limitations, but others around her must do so as well.

She often feels very lonely. She is not married and finds herself shouldering her own physical and mental struggles, as well as those of her daughter, by herself. She is lucky to have some close friends, but they have health challenges of their own to deal with and can’t always be there for her. She finds it mildly exasperating to constantly read how important it is for PD patients to surround themselves with supportive family – what if you are alone?

She also finds it irritating to read articles about PD that are relentlessly “perky” about PD. Yes, exercise can be very helpful and can sometimes help keep symptoms at bay. But “there is a down-side to PD as well. You should be allowed to feel that and express that”. It is also not your fault if your PD worsens – it does not mean that you did not do enough.

She finds psychotherapy to be very helpful and is thankful that she found a “good fit” – someone who is willing to listen to her and try to understand things from her point of view. She also finds participating in exercise classes to be very helpful as well. Besides the clear benefit from the exercise, the classes create a social environment with people who are going through the same thing as she is. Because she did not do much exercise before her diagnosis, in the past she tended to see an exercise class as part of her illness. Now she has reframed it for herself in a positive light – as an important part of healthy living.

She now understands a few key lessons about her mental health:

  • “We are taught that we shouldn’t feel sorry for ourselves or wallow in pity. But it is OK to have empathy for yourself. This does not mean that you think of yourself as the victim all the time.” But it does mean, that you are allowed to give yourself a break if you are having a rough patch.
  • Give yourself permission to ask for help. This can be particularly difficult for people who are used to being the ones who do the helping.
  • You need to be able to acknowledge your limitations and say no if someone asks you for help that you are not able to give at the moment.

Get to know the true faces of Parkinson’s and be inspired by these incredible individuals. Read more stories from our community, or share your own.

Hear their Stories

Key Tips & Takeaways:

  • Not everyone with PD will face mental health issues, but for those who do, the symptoms can vary greatly.
  • If you’re concerned about your mental health, discuss this with your neurologist, who may refer you to a psychiatrist or therapist, depending on your particular situation.

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