Thursday, May 26, 2016

Parkinson's People: Please Take My Brief Survey About Advocacy and Volunteering as Alleviating PD Apathy

                               PLEASE TAKE MY SURVEY

Over 23 studies suggest that Apathy impacts 40% of those living with Parkinson's. It has been my observation as a clinical social worker with Parkinson's for seventeen years, that my own symptoms of Apathy are greatly reduced when I am proactively helping my community in some way, Multiple peers with PD have reported similar experiences, but as far as I know, there are no studies about this. Evidence has already shown that for those with PD, our quality of life and overall moods can reap significant benefits from exercise, dance, singing, involvement in the arts, and social connection.  
If you are unsure about whether or not you may have Apathy or Depression, (or neither), there are a number of overlaps between symptoms of Depression and Apathy, including fatigue, anhedonia (absence of joy), slowness, and insomnia, (and some are symptoms of Parkinson's!)  Depression, however, is a mood disorder with longer- lasting symptoms, and can include loss of self-worth, guilt, and suicidal thoughts. If you have any of these feelings, you should see your doctor for an accurate diagnosis.

Apathy is considered to be primarily a motivational disorder or syndrome, with symptoms which can fluctuate throughout the day. Some research suggests that Apathy seems to worsen as PD motor symptoms progress. Key symptoms of Apathy are decreased motivation to initiate new tasks; a flattening of emotional response (or indifference) to people & events which once evoked stronger emotional response; reduced curiosity and interest in learning new things; and a general loss of a "get up and go" spirit.
There are no formally recognized diagnostic tools for Apathy, but it is a recognized syndrome, and seemingly not alleviated by anti-depressant medications. Yet, when some with PD are engaged in Advocacy-type activities, such as educating others about Parkinson's, speaking with local or national political representatives about research funding, fundraising for a cure, or organizing visits or gifts for sick peers, those volunteers report that their Apathy symptoms seem to lift.
IF you have PD, please complete this survey to help me assess how widespread this "treatment" actually is. Thank you. Survey results will appear on a poster at the 2016 World Parkinsons Congress in Portland, Oregon.                                               Leonore Gordon, LSCW;;