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The Marathon of Parkinson’s Disease
March 3, 2015
The Marathon of Parkinson’s Disease

Posted by Nancy Mazonson

Parkinson's disease can often feel like running a marathon.Having a parent with Parkinson’s (PD), a neurodegenerative disease, can present some formidable challenges for adult children. The journey as they help their parent with PD is a marathon, not a sprint.

For many adult children, their first instinct upon learning of the diagnosis is to troll the Internet. Very often they find that quick answers to family challenges cannot be readily found. For this reason, JF&CS Parkinson’s Family Support recently offered a unique resource in the Parkinson’s world: a seminar for adults coping with a parent’s Parkinson’s disease.

On Thursday, February 26, ten adult children joined me and Marjie Sokoll (who relate both through our work with adults with PD but also as adult children of dads with PD) for an evening of learning and sharing. Participants heard about some of the more esoteric realities of PD, shared their own stories, and wondered together how to respect and maintain their parent’s dignity while also acknowledging that their once independent parent now needs assistance. The evening included many “Ah… somebody gets it!” moments.

The seminar included a wide range of topics including:

  • The “lingo” of PD 
  • A look behind the “masked face” of PD
  • The ways in which physical, cognitive, behavioral, emotional, and sensory changes impact day to day living
  • Caring for the care partner
  • Traversing the PD medical world
  • Genetics and PD
  • Loss and grief when a parent has PD
  • Planning for the future

The JF&CS Parkinson’s Family Support program was founded eight years ago by two adult sons, Dale Okonow and Mitchell Robbins, whose fathers had PD. We strive to design and offer programming that helps make living with Parkinson’s disease more manageable for everyone in the family.  Last Thursday’s group members both learned from us and each other and contributed to the combined wisdom of our Parkinson’s Family Support program.

Nancy MazonsonNancy Mazonson, MS, OTR/L, has coordinated the Parkinson's Family Support program of JF&CS since its inception in September 2006. The program is a leading resource in the Boston area with its unique programs, including Parkinson’s Dance, Adult Child and Care Partner support groups, and Tremble Clefs choral singing group. Prior to her work at JF&CS, Nancy worked extensively as an occupational therapist in inpatient and community-based rehabilitation settings, specializing in helping people with degenerative neurological conditions.

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