How it all began

Jenny Nelson's tattoo of the PD Flower

Welcome to the PD/MS Narrative Project, a collective repository of stories by and about people living with Parkinson's  Disease and Multiple Sclerosis.

Established in 2012 at Ohio University, The PD/MS Narrative Project began as a standard academic research endeavor (funded by an OU 1804 grant) called "Making Sense of PD/MS Narratives."

Dr. Jenny Nelson, the project’s director, was diagnosed with PD in 2010.  Noticing that media representations of the disease were misleading, she and her colleague Dr. Karin Sandell – diagnosed with MS in 1991 -- decided to examine how PD/MS are depicted in 3 overlapping areas: 

* medical discourse (in the form of diagnostic tests, brain imagery, and the resulting pamphlets and websites),    

*entertainment discourse (books, blogs, TV and film), which often draws upon medical discourse in the genres of medical dramas, afternoon talk shows, and romantic dramedies,

* the stories of the people who try to make sense of all this often-conflicting information.

The research resulted in a travelling presentation called 
"A Whole Lotta Shakin' Goin' On: a Rhizomatic Approach to PD/MS in the Media,” 

The presentation was developed for 3 different, yet related audiences:  

*PD support groups
*Physical Therapy faculty/students 
*Media/Communication Studies faculty/students.

PD Support groups are always eager to see how their stories are (not) being told, and they have strong opinions about the latest episode of (insert show), or whatever Michael J. Fox's latest vehicle is. They are our secret team of researchers, always looking out for PD/MS people in the media. 

Physical therapy students are especially impacted by negative media representations, which can affect their willingness to pursue a specialty in PD Movement Disorders:  who wants to do PT with people who are always depicted as inevitably deteriorating?

Faculty and students in Media/Communication programs are introduced to a new way of doing collaborative/ethnographic research, inspired by Deleuze & Guattari's theory of rhizomatics,  the theory of discursive power/knowledge set out by Michel Foucault, and Dr. Nelson's own engagement with semiotic phenomenology and health communication.

Click to read my work on The PD/MS Narrative Project:

When Your Body Stops Being You

Then came the videos! Because Larry Ice was the very first  person to book "A Whole Lotta Shakin'" for his Vienna, West Virginia PD support group, and because everyone there was so forthcoming,  Jenny decided that the best way to repay their hospitality was to make a video of the final performance of Larry and Dave Fleming's entertaining "coping with PD" routine.  There was only one problem:  Jenny didn't know what the hell she was doing.   

Not yet aware of her limitations, she grabbed some video equipment and took her trusty student team (Yan Zheng, Nolan Alexander, and Babe Finley) to Vienna, where they soon discovered that:  
(a) the microphone had no battery and 
(b) the memory card filled up really fast.  
Other than that, things went fine.  They got "some footage."  
Then, because Nolan was enrolled in 16 hours of classwork, had an internship, had his computer crash at least once during editing, (and because Jenny didn't know what the hell she was doing), the final cut was delayed.  The first minute of the rough cut was really good, and so they posted that.  Jenny kept reassuring Larry that "it takes time" to do these things.  It took a really, really long time.  

"the Larry and Dave Show". the first video of the PD narrative project

But it was enough to spur the people on!  Larry and Dave had some suggestions:  they wanted to change the title to the Dave and Larry Show because the didn't want their video to be associated with The Larry David Show, whose worldview they didn't particularly appreciate and with whom they didn't particularly want to be associated with