UNDERSTANDING AND DISCUSSING MENTAL HEALTH IMPACTS OF PARKINSON’S

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This post is purely meant to be educational and provide resources for mental health awareness and maintenance. If you or a loved one are experiencing a mental health crisis, please call 911 in an emergency or 1-800-273-TALK (8255) to speak to a crisis counselor.  

Why Talk About Mental Health? 

Mental health challenges are common for people living with Parkinson’s. In fact, depressive symptoms are often the first non-motor symptoms people experience on the road to a Parkinson’s diagnosis. As many as 35-40% of people with Parkinson’s report that they experience anxiety and depression. As the disease progresses, 60% of folks with advanced Parkinson’s experience depressive symptoms.   

Mental health issues in people with Parkinson’s can be interdependent on factors of daily life including dependency on caregivers, inability to participate in daily activities and hobbies, and decline in physical and cognitive health. These changes are often difficult to accept and may contribute to declining mental health.  

Additionally, a recent study showed that 26% of people with Parkinson’s experience symptoms of psychosis, and 50% of people with Parkinson’s will develop at least one symptom related to psychosis over the course of the disease.  

DEFINING KEY TERMS 

One challenge in understanding mental health is that so much of the terminology associated with mental healthcare is poorly understood. Here are some key terms that are helpful to understand: 

  • Generalized anxiety disorder: Excessive worry and decreased ability to handle uncertainty, fear of making the wrong decisions, inability to relax, and more
  • Panic disorder: Episodic experience of intense fear, heart palpitations, tightness of the chest, and dizziness
  • Social phobia: Intense fear of socializing and interacting with others
  • Depression: General loss of interest in daily life and persisting feelings of sadness or numbness 
  • Mild cognitive impairment: A comparative loss in memory or ability to think clearly based on relative age
  • Psychosis: Loss of connection with reality associated with hallucinations
  • Counselor: A professional trained in counseling psychology to provide guidance and support related to mental health issues
  • Therapist: A professional trained in any variety of mental and physical health practices to support wellness
WHAT TYPE OF PROVIDER SHOULD YOU SEE? 

There are many different types of mental health providers, and different needs are associated with specific professional fields. How do you choose? Consider the following general definitions and how they may be relevant to your own needs. 

Counselor/Therapist 

A counselor is a professional who has studied counseling psychology and is trained in the science of mental health counseling and individual therapy. A therapist is a person who is trained in any kind of mental- or health-related therapy. Counselors and therapists have many different theoretical approaches, so it’s helpful to ask a prospective clinician about their modality.  

Cognitive behavioral therapy (CBT) is a popular contemporary example of a therapeutic approach. This type of therapy addresses underlying beliefs about oneself and the world and how those influence actions and behaviors. CBT has shown to be beneficial for people with Parkinson’s and associated mental health issues.  

Psychiatrist/Neuropsychiatrist 

A psychiatrist is a professional who has attended medical school and is equipped to address mental health issues via pharmacological and medical-based practices. Psychiatrists can prescribe medication. Neuropsychiatrists have special neurological training that gives them further insight into how psychiatric symptoms and neurological diseases are linked.  

Psychologist/Neuropsychologist  

Psychologists study the mind as related to actions and behaviors and the associated treatments of mental and emotional health issues. A neuropsychologist specializes in the connection of these factors with neurological conditions.    

Social Worker  

Social workers can be trained as therapists in a variety of modalities and also have training on the social factors of wellbeing. Social workers can be care coordinators and patient navigators who can aid in finding access to government support as well as healthcare.  

FINDING A MENTAL HEALTHCARE PROVIDER 

According to the Bureau of Health, more than half of the US population is living in a Mental Health Professional Shortage Area. This shortage is even more significant when it comes to providers who have experience and familiarity with Parkinson’s. At this time, there are no direct resources to finding a counselor or therapist who specializes in Parkinson’s, however, here are some aspects to keep in mind as you look for a therapist:  

Identify Needs 

Before beginning therapy, it is helpful to have an initial understanding of the issues you would like to address.   

Ask yourself what issues are standing between you and daily contentment. Do you struggle to feel motivated? Are you having difficulty connecting with others? Is your internal dialogue less than helpful? If you are struggling to identify what you might want to address, invite a trusted member of your care team to weigh in on what could be helpful to bring to therapy. 

Utilize The Community  

One of the best ways to find a mental health professional suited to your needs is to ask other people in the Parkinson’s community for recommendations for counselors and therapists. This is a helpful way to connect with someone who is already familiar with the toll neurodegenerative diseases take on people. If you are not able to find a provider who has experience with Parkinson’s, consider searching for a provider who specializes in helping folks experiencing chronic illness.  

Have Patience 

It can take some time to find a provider that is the best fit for your needs. Here are some signs that you have found a good fit: 

  • You have an amiable, professional rapport with your therapist.  
  • You feel heard, validated, and respected by your therapist.  
  • Your therapist understands and addresses your needs as related to Parkinson’s. 
  • Your therapist is open to learning about your personal experience with Parkinson’s and obtains your consent before beginning any treatment plan. 

Psychology Today offers a searchable database that allows you to search for a specific therapist or psychiatrist based on location and individual preferences (gender, credentials, areas of practice, etc.). You can even search for clinicians who specialize in working with people who live with a chronic illness.  

COMMUNICATING WITH SPECIFIC CARE TEAM MEMBERS ABOUT MENTAL HEALTH 

Talking about mental health often feels daunting. Consider the following guidance about which aspects of mental health to address with different providers:

PRIMARY CARE PHYSICIAN 
  • Quality of daily life  
  • Difficulty maintaining daily health  
  • General difficulty with memory and/or cognition 
  • Physical symptoms of anxiety and/or depression
NEUROLOGIST/MOVEMENT DISORDER SPECIALIST 
  • Any symptoms of psychosis  
  • Detailed cognitive issues  
  • Lack of motivation maintaining physical health and exercise 
FAMILY AND FRIENDS 
  • Emotional difficulties and sharing struggles 
  • Requests for support in daily living tasks 
  • Assistance in making a plan for professional support  
PEOPLE YOU DON’T KNOW 

Parkinson’s symptoms may persist and even become more apparent when you’re out in public. You might, for example, be in a situation that heightens anxiety and aggravates your symptoms, leading to someone inquiring about your physical health. Because of this, the topic of your mental health may come up with people you don’t even know. 

Above all, it’s important to know that you don’t have to discuss your mental health with people you don’t know. Your experience is personal, and you get to decide with whom you share the details of your journey. It’s good to think about this ahead of time so you’re prepared to share what you feel comfortable with when the moment arises.  

Making It Work For you 

Mental health awareness is the first step on the journey toward finding meaningful support and whole health wellness. Beginning the conversation is the hardest part, so take a deep breath and bravely enter the space of talking about your mental health with all members of your care team.

Crisis Disclaimer 

Please remember: This post is purely meant to be educational and provide resources for mental health awareness and maintenance. If you or a loved one are experiencing a mental health crisis, please call 911 in an emergency or 1-800-273-TALK (8255) to speak to a crisis counselor. 

ADDITIONAL RESOURCES 

Cognitive Behavioral Therapy  

CBT Webinar  

Depression   

Psychology Today  

Emotional and Mental Health Resources 

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