Early onset Parkinson's

While challenges are inevitable – resources, community, and medical advancements offer hope and support for living well with Early Onset Parkinson’s.

Understanding Early Onset Parkinson’s

Parkinson’s typically develops around age 60, but Early Onset Parkinson’s — occurring before age 50 — affects an estimated 5-20% of those diagnosed. While some challenges are universal, younger individuals face unique issues related to family, career, and long-term management.

Larry Gifford (of the When Life Gives you Parkinson’s Podcast) hosts a panel discussion on Living Well with Young Onset Parkinson’s in May of 2020.

Progression in Early Onset Parkinson’s

Parkinson’s often progresses more slowly in younger individuals. For example, someone diagnosed at 40 can typically continue working for 15-20 years, compared to about half that time for those diagnosed at 60. Treatment advancements hold promise for extending productive years further.

  • Less likely to lead to dementia and balance problems.
  • More likely to involve focal dystonia (cramping or abnormal posturing in one area).
  • Greater sensitivity to Parkinson’s medications but earlier onset of side effects, including dyskinesias and motor fluctuations (i.e., “wearing off”)

Navigating Medication Decisions

Starting treatment involves personalized decisions in consultation with a neurologist or movement disorder specialist. Key considerations include:

  • When to begin medication for symptom relief.
  • Balancing symptom management with minimizing motor fluctuations.
  • Potential side effects, such as confusion or compulsive behaviors (e.g., gambling or shopping).
  • Exploring clinical trial opportunities.

While no medications currently slow Parkinson’s progression, a growing array of treatments can maintain function and quality of life for many years.

  • When is the ideal time to start treatment?
  • What are the benefits of different treatments?
  • Are medications covered by provincial health plans?

Employment and Early Onset Parkinson’s

Many people with early onset Parkinson’s remain in the workforce, often continuing full- or part-time work for years. Diagnosis doesn’t automatically mean early retirement, but it may require adjustments to reduce stress and accommodate symptoms.

  • Outline responsibilities and identify tasks impacted by symptoms.
  • Adapt workflows to match peak performance periods.
  • Communicate with employers about accommodations, which may be legally required in some regions.

Deciding when to disclose your diagnosis to an employer is personal. Consider factors such as the nature of your work, your symptoms, and legal rights in your area.


Family Dynamics and Support

Early onset Parkinson’s impacts the entire family. Open communication, flexibility, and shared problem-solving are key.

  • Maintain an ongoing dialogue about daily challenges.
  • Balance support roles to prevent caregiver burnout.
  • Protect personal time for self-care.
  • Share information honestly and age-appropriately.
  • Reassure young children that Parkinson’s is not life-threatening or contagious.
  • Provide teenagers with guidance while maintaining parental roles and boundaries.

Early onset Parkinson’s can be especially distressing for aging parents. Open conversations about care roles and emotional support can help address their concerns.