Managing Young Onset Parkinson’s Disease in the Workplace

People living with young-onset Parkinson’s disease (YOPD) are often in the prime of their career when diagnosed ― typically before age 50. Navigating Parkinson’s disease (PD) in the workplace can create distinct challenges and questions, such as how to work around symptoms or who to tell and when. Strategies to identify and address career needs early on, like vocational rehabilitation counseling ― services for people living with chronic disease or disability to tackle workplace challenges ― can empower people with PD.

This article is based on a Parkinson’s Foundation Expert Briefing “Work It Out: Managing Parkinson's in the Workplace” presented by Miriam Rafferty, PT, DPT, PhD, Shirley Ryan AbilityLab Research Scientist from Northwestern University, a Center of Excellence, and Bradley McDaniels, PhD, CRC, Assistant Professor, from University of North Texas.

Young-Onset Parkinson’s Workplace Challenges

While more studies on job challenges for people with Parkinson’s are needed, research shows that whether you are mid-career or returning to the workforce, experiencing PD changes in movement, mood, communication and cognition can all pose workplace obstacles. These can include:

• Motor or movement-related difficulties can affect writing, typing, navigating the workplace, getting to and from work. These changes can lead to people trying to hide symptoms or feeling self-conscious.
• PD-related motor and sensory processing system problems can affect speech and voice projection or limit facial expression.
• Non-motor mood changes can cause apathy, anxiety, depression or fatigue.
• Cognition and thinking changes can lead to multi-tasking difficulties.

Studies show such changes can cause people living with Parkinson’s to leave the workforce early ― not an easy choice for many. It can be especially challenging for people affected by YOPD, who may be far from retirement. Early vocational rehabilitation can be beneficial and provide strategies to address challenges proactively.

Job Accommodations and Protection

State-run and federally funded, the Employer Assistance and Resource Network on Disability Inclusion (EARN) vocational rehabilitation focuses on helping people with documented physical or mental disabilities continue working, offering wide-ranging support services, including counseling and training. EARN provides contact information for state vocational rehabilitation agencies here.

The Americans with Disabilities Act (ADA) protects people with disabilities who have the skills, education and experience required for the job, and can perform essential job functions with or without accommodation, from discrimination. Discrimination is when an employer doesn’t make reasonable accommodations or denies jobs or benefits based on someone’s disability ―unless accommodations cause undue hardship to the employer. Similarly, the international United Nations Convention on the Rights of Persons with Disabilities is designed to protect the rights of people with disabilities worldwide.

Navigating Disclosure

The decision to share your PD diagnosis is personal. Though people living with PD have no legal obligation to disclose health information, when symptoms begin to hinder work quality, sharing a symptom diagnosis and how it impacts your duties can qualify you for accommodations. Vocational rehabilitation counselors have expertise in navigating disclosure and accommodations.

When you are ready to share your diagnosis, these tips can help:

1. Be prepared with facts.
2. Focus on your desire to continue as a productive, valued employee.
3. Know what accommodations you need to succeed in your job.
4. Keep it simple. Use non-medical terms and share how symptoms impact your ability to do your work. For example: “My tremor is affecting my work. Voice-to-text software can help me better do my essential job functions.”
5. Know your rights but avoid discussing the ADA.

Your Care Team and the Workplace

Assembling an interprofessional care team of diverse health experts ― doctors, social workers, physical and occupational therapists and other health professionals ― is key to living optimally with Parkinson’s. Your team can also help you navigate PD workplace challenges. Your care team can include:

• A movement disorder specialist (a neurologist who’s completed additional movement disorder training) can help manage symptoms with medication and provide referrals to other allied health experts. Your care team can be built around a neurologist.
• An occupational therapist can help you navigate everyday work life activities, such as handwriting, typing or assistive technology.
• A speech-language pathologist can offer speech and voice help.
• A physical therapist can provide mobility and exercise recommendations.

Parkinson’s Workplace Gaps

A Shirley Ryan AbilityLab stakeholder focus group including people with Parkinson’s and allied health team members identified three key needs for newly diagnosed people with PD in the workforce:

1. People with Parkinson’s need someone to start the discussion about employment challenges.
2. People with Parkinson’s and health experts need more information on navigating employment challenges with PD.
3. Employment-related involvement needs to be individualized and proactive.

Using a 2020 Parkinson’s Foundation Community Grant, the Shirley Ryan AbilityLab is working to address these needs, recruiting applicants for its Virtual Vocational Rehabilitation for People with Parkinson's Disease through March 2021. Contact Sydney Achler at SAchler@sralab.org for information.

The Parkinson’s Foundation Helpline can also provide answers to your PD-related workplace questions or resources in your area. Call 1-800-4PD-INFO (1-800-473-4636).