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;;

Thursday, May 12, 2016

Join Us at World Parkinsons Congress in Portland, Oregon, from 9/.20-9/24

Join us in Portland, Oregon for the 4th World Parkinson Congress; September 20-23, 2016

More than 3,500 people from 65 countries will attend the WPC 2016 in Portland, OR to learn about cutting edge science, clinical research and comprehensive care from some of the most renowned health professionals, researchers, and advocates globally. Registration is open NOW!
Look for Travel Grants if necessary.

My Belief: Advocacy Alleviates Apathy Caused by Parkinsons: My Video Submission to World PD Congress 2016 Video Competition

Advocacy and Helping Others Can Be An Antidote to Apathy: My 3-Minute Video made with Myra Kooy

My video is about realizing how advocacy and doing good for your community alleviates the crippling Apathy which often comes with the whole package of PD, and which depression meds don't help.
I was petrified to do it, but because this felt so vital to convey, I pushed past my self consciousness about PD symptoms of speaking too fast, too low, and too garbled when I get very excited to convey something important. 

 This all is all like a dyskinesia of your expressive speech mode, common but exasperating and embarrassing.  

So with my wife Myra as coach, I practiced speaking about what I needed to share into webcam on computer about three times to really assess myself. 
When I realized I didn't look so bad, but just couldn't slow down my speech, I decided to summarize bullet points on paper as I spoke, with my face hidden at points, as a kind of visual translation, with photographs. 

Enjoy! Leonore

Thursday, May 5, 2016

My Articles: Shattering the Myth of "Wow! She's Gotten So Much Better!"

  • Leonore Gordon, LCSW; (718) 783 1986; Please do not duplicate without permission
    Shattering the Myth of "Wow! She's Gotten So Much Better!" with “Your Neighbor with Parkinson’s is Feeling Better For the Moment, Thank You, but Check Back in an Hour....”

           As a 58-year old female poet and retired family therapist, with 15-plus years of living with Parkinson’s under my belt, I aim to take on PDF’s challenge for Parkinson’s Awareness Month, ie. “Which myth about Parkinson’s would you most want to shatter?” As a Jewish therapist, I’ll answer a question with a question, and ask, “How many ‘selves’ really exist on a daily basis inside of your neighbor with early-onset, advanced Parkinson’s?” (This is not to imply that we who live with Parkinson’s are like “Sybil” with diagnosable pathology!)  

    I’m referring to the unpredictable and fluctuating states our Parkinson’s bodies morph in and out of throughout each day because of the imperfect medications most of us in later-stage PD need to take every 2-4 hours in order to get up out of a chair and walk. These are medications on which we are dependent to treat our disease until a cure is found, but their consistent and hourly effectiveness is far from a sure thing.