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“Young Onset Parkinson’s Disease: Not What I Planned, For Me or My Family” – Webinar Notes

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Parkinson’s Foundation hosted a webinar in mid-September 2020 on Young Onset Parkinson’s Disease (YOPD) and how it affects people and their families. The speaker was Allison Allen, social worker with Parkinson’s Foundation. She discussed the difference between PD and Young Onset PD, interdisciplinary care, and steps to living well with YOPD. 

Allison began her lecture by explaining what Young Onset Parkinson’s disease is: PD that is diagnosed in people under 50 years of age. Of people with Parkinson’s that live in the United States, 10% of them are diagnosed with YOPD. Most, if not all, of the motor and non-motor symptoms are the same between YOPD and PD, as well as strategies for symptom management. 

The main difference between YOPD and PD is that symptoms of YOPD may progress slower than that of PD. Additionally, there are more side effects from common dopaminergic PD medications for YOPD, such as involuntary movements (dyskinesia) and greater fluctuations between on and off periods. 

Allison believes that interdisciplinary care is the best way to manage Young Onset PD, which is a collaborative approach to care with specialists, the person with YOPD, and their family. Here is Allison’s recommended list of specialists for interdisciplinary care:

  • Movement Disorders Specialist (MDS)
  • Physical therapist (PT)
  • Speech Language therapist (SLT)
  • Occupational therapist (OT)
  • Social worker and/or mental health provider
  • Pharmacist
  • Nutritionist

The lecture was recorded and can be viewed here.

The speaker’s slides are here.

Stanford Parkinson’s Community Outreach has a lot of resources on Young Onset PD here.

If you live in the Palo Alto area, Stanford helps coordinate a YOPD support group, which meets virtually during the COVID-19 pandemic. If you are interested in joining, please email Robin Riddle, at Stanford.

I listened to this lecture and am sharing a summary below. 

– August Besser

“Young Onset Parkinson’s Disease: Not What I Planned, For Me or My Family” – Webinar Notes

Speaker: Allison Allen, licensed clinical social worker, Parkinson’s Foundation

Host: Parkinson’s Foundation

September 15, 2020

Summary by August Besser, Stanford Parkinson’s Community Outreach

What is Young Onset Parkinson’s disease?

  • Young Onset Parkinson’s Disease (YOPD) occurs in people with Parkinson’s disease (PD) who are diagnosed before age 50
  • Up to 10% of total people living with PD in the United States have YOPD

Understanding the Symptoms of YOPD

  • Motor and non-motor symptoms are similar in PD and YOPD
  • Tremor, rigidity, bradykinesia, impaired balance, depression, sleep disturbances, mood and memory changes, urinary issues
  • Symptom management is generally the same in both YOPD and PD

How is YOPD different from PD Clinically?

  • Symptoms may progress slower than PD
  • More side effects from common PD (dopaminergic) medications
    • Dyskinesia (involuntary movements)
    • More frequent dystonia (a type of dyskinesia)
    • Motor fluctuations with “on” and “off” times
  • People with YOPD are more likely to carry genes linked to PD
  • Younger brains may have higher neuroplasticity

An Unexpected Diagnosis

  • Busy careers
  • New partnerships
  • Parenting and growing families
  • Caring for elder parents
  • Looking forward to retirement
  • YOU are still the same person you were before!

Special Considerations in YOPD for Providers

  • Distinguishing social factors should be recognized
  • Parenting and caregiving responsibilities
  • Time away from work for provider visits
  • Future plans: continued education, career goals, pregnancy and growing families
  • PD Gene testing
  • Make early referrals to interdisciplinary care!

What is Interdisciplinary Care?

  • A collaborative approach to care with specialists and the patient and family
  • Movement Disorders Specialist (MDS)
  • Physical therapist (PT)
  • Speech Language therapist (SLT)
  • Occupational therapist (OT)
  • Social worker and/or mental health provider
  • Pharmacist
  • Nutritionist

Benefits of Interdisciplinary Care in YOPD

  • Baseline assessments determine opportunities to stay well or for improvement. Where do you have the most needs? What are you already doing that is working?
  • Learn preventative strategies
  • Make a personalized care plan using your priorities
  • Younger brains may have higher neuroplasticity
  • Higher patient and family satisfaction with quality of and actual outcomes improved

Defining YOUR Goals and Decision Making

  • One step at a time! Consider choosing your next “care” step based on your priorities and personal and/or professional goals
  • Medication – to take or wait?
  • Do you want to get involved in a PD focused community? (Support Groups, Educational Programs)
  • You decide when/where/with who and how you share your diagnosis

Planning Ahead for Your Family

  • Planning ahead for the future can alleviate stress in times of crisis…
  • Complete Health Care Power of Attorney (HCPOA), Advanced Directives and family care plans
  • Familiarize yourself with your disability and long-term care insurance/policies
  • Talk with your children about PD

Proactive Steps for Living Well with YOPD

  • Exercise!
  •  Prioritize PD related provider visits
  • Create a daily routine to balance personal and professional goals
  • Evaluate your support system and grow as necessary
  • Remember, you are always evolving, so your plans and goals can change, too!
  • This is your story!

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