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Parkinson’s Disease- What You Can’t See Hurts

Most people immediately think of tremors and muscle stiffness when asked to name a symptom of Parkinson’s disease (PD).  But what about symptoms that can’t be seen, only experienced by the people living with this progressive neurological disease?

The Parkinson’s Outcomes Project reports that negative mood and depression have the greatest impact on health status and that 40% of people with PD experience depression and/ or anxiety disorder.  These symptoms seem to have even greater impact on quality of life than motor symptoms.  Then there’s constant frustration from the struggle of just getting through daily activities.  But I think another symptom leads to another invisible pain– feelings of isolation.  One symptom of PD is a mask-like expression that comes from the impact of the disease on the facial muscles.  The subtleties we rely on in communication and social connection are gone.  Imagine a man with PD at a social gathering, say a community picnic. Here’s someone who can’t move well so stays in one place mostly and has a blank expression on his face. Is this a person who will likely be approached by others? I suspect not.  Strangers will misread the expression as boredom and withdrawal. Acquaintances may feel uneasy about what to say as they notice the changes that have occurred and avoid the person. Closer friends may overcompensate for their uneasiness and dote or be overly “helpful”.  The end result is that few people will treat this man as they would have before PD.  Satisfying social relationships must be hard to come by for many people living with the symptoms of PD.

I have a client, a man who has, for years, been an active board member of a community music guild. In his elder years he developed PD, however he continued to be involved. During a recent Compassionate Touch® session he told me about the last board meeting he attended.  He said that hardly anyone spoke to him directly and he felt ignored. “I’m the same person!”, he told me. “Do I smell?!” ” I’ll never go back.”  The more I thought about this, the more I realize the full impact of his statements. He’s been cut out of community and he knows it.

My question for you to reflect on: Why? What are the dynamics at play that shifted the way others react to this man (and most people who live with a disabling condition).  How can we make a positive difference? Your thoughts?

Guest blog post by Pedagogy author Ann Catlin:

Ann Catlin, OTR, LMT is an acknowledged expert in the field of massage therapy in eldercare and hospice. She brings to her work thirty years’ experience as an occupational therapist in eldercare and disability rehabilitation. She founded the Center for Compassionate Touch LLC, an organization that offers training in Compassionate Touch®, an approach for those in later life stages. Ann is the recipient of the 2012 One Concept Humanitarian Award honoring her work training others to serve this special population. She may be reached at www.compassionate-touch.org. 

This original blog post appeared in CompassionateTouch.org

To learn more about Ann's online continuing education course Massage and Compassionate Touch® in Dementia Care click the course title.
Posted: 5/28/2014 4:00:00 AM
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