KEEPIN' IT REAL: Chuck's Truck

This is the first video Camilo Perez and I made after Jenny's Radar, and it's my favorite for a bunch of reasons.  It was the first time Camilo had met the guys in the small PD support group that meets at Larry's house every Tuesday morning in Vienna, West Virginia.  After the meeting was over, Chuck asked Camilo if he wanted to go for a ride.  Without hesitation, Camilo grabbed the camera and climbed into the cab of Chuck's truck, and away they went. Here's what happened.  After you watch the video, head beyond the jump to read about some of the production issues -- and ethical issues -- we grappled with as we edited it.

Seeing is Believing: An Introduction to Parkinson's Videos on YouTube

Intro

Hi there! I’m Madison, and I just recently joined the PD Narrative gang.  I'm a junior English major here at Ohio University, and I’ve been watching thousands of YouTube videos this month so you don’t have to.  Video seems to be the favorite form of communication these days, and people with Parkinson’s are no exception.  

1. “Hi, my name is”

These videos are made by regular people, who begin with the dreaded diagnosis story, then move to “where I am now”--how they came to terms with the disease and learned to persevere.

Here’s two of the most popular vlogs.  “Popular” usually means a couple hundred views accumulated over time, but these have significantly more than that.

Which one do you like more?

2. Promos

These are produced by prominent research foundations, and usually include basic facts about Parkinson’s, ending with an appeal for donations.

These videos have titles like “Face of Parkinson’s” or “____’s Story about Parkinson’s,” which assumes that people won’t care about Parkinson’s until they can link it to somebody.  The following is a good example of a “collage” video (notice the juxtaposition of Parkinson’s people with medical experts (in white coats, no less!)):

                                       

The black and white images and neutral backgrounds, combined with the dramatic music and the relentlessly inspirational phrases was just too much for me.  However, I understand their intentions: to evoke an emotional response, to get the viewer to reconsider perceptions of people with Parkinson’s and to create support for their research.

Here’s an example of a really interesting and creative promo from the Shake It Up Foundation in Australia:

3. Celebrity Videos

These are pretty self explanatory, right?  Parkinson's people find it helpful to see hyper-visible celebrities talking about the disease, especially when they have it.

These celebrities include Ben Petrick, Freddie Roach, Jane Asher, Katie Couric, and of course, the ever-present Michael J. Fox.  (Because they're celebrities, we figured you could find them on your own.)

Does it make a difference to you if the celebrity has Parkinson’s or not?  Does the video lose credibility if the celebrity is just a spokesperson for PD?

4. Q&A

Here, doctors talk straight into the camera--think a video version of WebMD.  There’s a wide range of videos, each focusing on a single issue, so it’s easy to search for an answer to whatever question you may have.  

Which example do you like best?

                                          

5. Creative

As the apprentice video producer here at the PD Narrative Project, this is my favorite category.  There’s dance, poetry, acting, all kinds of different ways to share their stories.  Instead of just a diagnosis story and a catalogue of symptoms, these videos tell stories about living with Parkinson’s.

Here a woman with young onset PD describes how PD changed her daily life and how music keeps her going when her symptoms get rough:

                                          

Here a man uses poetry and video to tell a story of how his PD symptoms made walking home difficult:

Of course, my ABSOLUTE FAVORITE videos are our own! (And not just because I helped shoot one!)  We’re going into this project with an awareness of what’s out there: we’ve spent a lot of time looking at other PD blogs and videos, and we’re figuring out our place in this digital space.  We want to share unheard stories, and we want to help others tell their stories in imaginative ways.

Final Thoughts

Who knew that Parkinson’s would be such a popular topic on YouTube!  You’d be surprised at what you can find. At this point I’ve only scraped the surface, and I’m sure there's more to discover.  Let me know in the comments if you’ve found anything you’d like to share!

Thanks for reading, and see you on YouTube!

P.S. Want to see the strangest video related to Parkinson’s I found? Click here.

On Becoming Left-Handed, or Be Careful What You Wish For . . .

So I’m trying to mix a motherfucking meatloaf for Father’s Day with my right (Parkinson’s) hand, and it’s pretty laborious.  My left hand usually takes over about this time, but it’s just too messy, so I’m left to my own devices.  Which reminds me . . (cue flashback music)

All my life, I’ve wanted to be left-handed.

Left-handed people were so cool.  enigmatic.  mystical.

Controlled by the brain’s right hemisphere,

They also had a tragic history of oppression:

hands tied behind their backs, forced

To draw the alphabet with their clumsy, inanimate, claw.

I tried to write left-handed, curling it up and over the page like my brother did, imagining perhaps a nun hovering over me with a ruler, watching for the devil, ready to strike the moment the captive hand freed itself in a desperate attempt to assist me in expressing myself.  (This may read like some kinky bondage scenario, but I'm directing this scene, not some French auteur. And I’m not even Catholic.)

Anyway, back in the day, the closest I came to feeling left-handed was by writing backwards, from the right side of the page to the left, then turning the paper over to reveal, ta-DAH!  A perfectly formed sentence. Twenty years later, I had the same feeling when I was learning Arabic.  There I was, writing from right to left again, but this time drawing letters that were unfamiliar, and totally mesmerizing.

So I’ve had some practice with this awareness of left/right-hand shenanigans, right?  Handedness is intrinsic.  Like Lady Gaga says, you’re born that way.  So you can imagine how weird it was to discover, one fine day in 2010, that not only did my left hand know what my right hand was doing, it had taken over!  Without asking permission!  Without even announcing itself, it just stealthed its way into dominance. 

I was gardening, minding my own business, when I looked down at my hands and went, “Hmmm.”  It didn’t register right away.  Then it did:  “Jenny, why are you dead-heading the chrysanthemums with your left hand?”  I hadn’t done anything; I hadn’t switched them on purpose; there was no conscious awareness of having made a decision.  It. just. happened. 

And that was maybe the second symptom of Parkinson’s I noticed.  Like most everyone who has contracted this disease, I didn’t have the semiotic resources to be able to put these (seemingly) unrelated little incidents together to form a coherent meaning, aka a diagnosis.  That took another 6 months or so. The body knows, people!  And you know, while we’re at it, let’s reconsider the pugilistic parasitic pirate invasion metaphor, shall we?  The left hand knew something was amiss.  Without any fanfare, it gently stepped in to lend a helping hand and, by doing so, finally fulfilled my longing to be/come left-handed.

The meatloaf turned out pretty good, too.

Coming soon:  hints on how to make micrographia work for you!

Going to the EQRC! A Rhizomatic Comedy

“A Whole Lotta Shakin’ Goin’ On: the PD Narrative Project”

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JUNE 6-8 2013

WELCOME TO THE RHIZOME: This word pops up repeatedly in this post, so allow me to explain it a bit: a rhizome is a particular kind of logic that uses the metaphor of the shallow surface roots of a spreading plant (think crabgrass and irises) where there is no beginning or end (no cause, no cure – sound familiar?), and that ceaselessly combines referents from everyday life, science, pop culture, and so on. It’s indiscriminate and spontaneous. It’s a perfect metaphor for PD, too, which I’ll discuss in a later post.

Preparing for an academic conference is a taken-for-granted process that, especially for someone with Parkinson’s Disease, entails a lot of planning, reliance on a team of supporters, and crazy luck. The stress can be considerable. The team members mentioned in this post include graduate students from my Qualitative Research class who are presenting their very first conference papers, which is a very big deal – there is a rigorous review/selection process at EQRC:

Jen Bell, whose research is on the British TV show, The Inbetweeners and its US remake;

Mohammad Ala Uddin, from Bangladesh, on breaking gender stereotypes in BBC Janala’s English-language program;
Benedine Azanu, from Ghana, on media depictions of African women leaders;
Karim Farhat, from Lebanon, on images of terrorism;
Danielle Echols, from Chicago, on how history gets re-written;
Kelly Choyke, on paranormal romance readers, and
Yan Zheng, who’s been my assistant on The PD Narrative Project since 2011.
Other players in this post are Sam and Ben, the newest undergrad members of The PD Narrative team. 

Anyway, here's what went wrong happened (nothing goes “wrong” in a rhizomatic chain of events; things just happen) on the way to Cedarville (about 3 hours west of Athens, over by Cincinnati).

WEDNESDAY: PRELUDE TO THE CONFERENCE 

Sam has half-assed the PowerPoint revisions for the conference, promising to get them back to me by 2, then 7, then 9pm with an inexplicably photo-shopped cover slide with “Parkinsins” and “Micheal J Fox” misspelled.  I am somehow unable to fix this.  Alarmed by Sam's carelessness, I am reminded how much I rely on the team members I’ve come to trust.

THURSDAY, June 6

I arrive at the office at 10AM and Ben is there. This is his second meeting. He can’t fix the PowerPoint, either. Relieved that my media illiteracy is not the problem, I text Sam, then call him. It gets fixed. Consider the rhizome.

LATER THAT AFTERNOON

Exchange my little red car for a behemoth university vehicle, and go shopping for provisions in a massive downpour.

Ali (my husband) urges me to abort scheduled evening voyage because of thunderstorms, darkness, traffic and PD-anxiety. My relief is palpable when I finally agree, and text the crew about revised departure plans. There’s a twinge of guilt, as every PwP knows, but that’s the way it goes.

Of course, the weather clears up immediately! I spend the evening fine-tuning the presentation, adding notes and rearranging slides (maybe a little executive dysfunction goin' on?); everything’s on the flashdrive (cleverly named NO NAME), ready to go!

FRIDAY MORNING – ON THE ROAD

One last PowerPoint remix and we’re off to Cedarville! 
Pick up Ala from Grad Lounge and Yan from River’s Edge. 
An hour into the 3-hour drive, Yan and I decide to practice the PowerPoint in the car. 
“Won’t this be fun,” I think, “driving and dictating.” 
Rhizome-in-motion at 70 mph on Route 50 West.

As we wax semiotically about the various designations for USB/external/thumb/flashdrives, the actual referend refuses to appear on my laptop. Or maybe the referend is there, but its signifier isn’t. 
It doesn’t appear on Yan's laptop, either.   Or Ala’s.
Yan calls Ali, who step-by-steps its recovery:

“Scroll down til you see No Name.”
“Ok! There is no No Name.”
“You found it?” (everyone's kinda shouty now: speakerphone syndrome plus stress...)
“No, No Name is not on the list of icons!”
“But is there a No Name . . .”
You get the idea: Who’s on First.

At any rate, NO NAME is NOWHERE. 
All (data) is lost. 

What the fuck happened? An irrelevant question at this point.

Route 50 is flat now. There is no cruise control on the university vehicle.
We go into hyper-drive, scouring and scavenging from previous versions of the Prezi that Yan has saved, thanks to Ala finding us internet access via my phone, which I clearly do not have the semiotic resources to use properly. We congratulate ourselves on our collaborative capabilities.

Note to self: do not jinx the rhizome by turning its tactical function into strategy.

We stop at the Country Diner, the waitress clearly bemused by our requests for no meat, no ice, what are “hash browns”?

Double-take on Ala; he doesn’t know this yet? A first-year MA student from Bangladesh is probably not brunching it at the Bob Evans on a regular basis.

Never mind, he knows more than we do.

We talk about how eggs are prepared/served/eaten in China, Bangladesh, Morocco, Vietnam.

I invoke Claude Levi-Strauss’ The Raw and the Cooked for good measure, because I can.

So we get misdirected somewhere on I275, I71, Rt. 52/72; it’s now become a 4-hour tour (CUE Gilligan’s Island music) and Ala’s presentation is scheduled to begin in less than 30 minutes.

We call Ali again, who recommends different directions from those that the conference has provided. When faced with the choice between oral suggestion (from my husband) and visible printed map (from conference organizers), I choose the latter.
Note to self: never do this again. 
We pass by our hotel in Xenia (no change of clothes for you, Ala!) and end up doing a circle on Route 42; Ala is reporting all of this from the backseat with the GPS app.

FRIDAY AFTERNOON – THE CONFERENCE ITSELF

We finally arrive. Ala checks the room where he will be presenting.  There is no internet access, and the conference organizers categorically refuse to allow it, on the grounds that its absence enables us to “concentrate on our presentations.” LOL. Given what we’ve been through, that’s patently absurd. 
We are living in parallel universes.
I have now abandoned my “mentor” job description, and explain to Benedine (on same panel as Ala) that I am unable to attend because of technical difficulties of my own. I feel guilty, but the show must go on!

Yan and I sequester ourselves in an alcove and review our PowerPoint choices. Each one has a different emphasis, goes off in different directions; we finally choose The Video Game version, and make some changes. 
Ok, done! We’re finally ready!

I check the conference program description of my paper.

               -- double-take -- what the fuck?!
I promised a paper about the ethnographic process of making the PD Narrative videos? Not the mainstream media representations of PD?
When on earth did I write this?
It doesn’t matter, because the presentation is scheduled to begin in 5 minutes. 
I throw up my hands and surrender to The Rhizome (and probably some executive dysfunction).

Yan and I arrive in the presentation room to discover that the audio is not working, which is sort of the whole point of the videos. While two tech people try to solve this, Presenter #3 graciously agrees to go first. Presenter #2 is a magic no-show (thank you!), which give us 15 minutes to kill while another grim-faced techie is called in.
So I answer questions about -- get this -- something the audience has not yet seen, which is so rhizomatic that I have to mention it when someone asks what rhizomatics is.

The moderator tells some jokes.
I consider re-enacting the video with sock puppets.

And consider the rhizome.

The audio blasts from the speakers; it’s working! I talk about how we made “Jenny’s Radar” and “Chuck’s Truck.” No PowerPoint needed after all, heh heh. It’s a rousing success! People are interested in learning more about PD, about video ethnography, about Chuck!

I am so happy.

Everyone else’s presentations go well, too. I am proud of everyone for rising to the occasion and doing something that, back in February, they thought was impossible.

We have a communal lunch with the other 150 conference participants.

SATURDAY AFTERNOON – POST-CONFERENCE

The return drive to Athens is much shorter; isn’t there some existential temporal rule about this phenomenon?

Yan asks if she can put the hours she’s spent with me on the payroll.

“Of course!” I say, because really, what would I have done without her? She rose to every challenge, assisted me without complaint or condescension.

Yan will disappear (aka graduate) at the end of this month.
Just like Camilo disappeared at the end of May.

And countless others before them.

The rhizome reminds me, again, of the bottom line, 
of becoming rhizomatic.

Welcome to the PD Narrative Project!

Greetings, all ye who enter . . . Welcome to The PD Narrative Project!
We're a motley crew of people based in Athens, a small college town in southeast Ohio (aka Appalachia), who have nothing better to do than to sit around and think up creative ways to deal with Parkinson's Disease.

There are currently 9 of us actively working this summer:  me (Jenny Nelson, benevolent overlord), the one whom PD decided to reach out and touch a few years ago (and it has been dogging me ever since).  It's like that stupid Abilify blanket in the commercials--an ad we will soon be parodying, along with anything else that crosses our path.

We're all about the stories of people living with PD: real stories, made-up stories, poems, drawings, you name it.  Really.
                                  <<  YOU NAME IT  >>

The PD Gang at Work

Whether you're a PWP (person with Parkinson's), or know someone who is, or just a curious bystander, we're asking you to share your stories with us!  What has PD done for you lately? (thank you, Janet Jackson song)  Trip you up, take you down, push you around?  I've been getting weird internal tremors that feel like something from Alien is going to burst out (even though you can't see it), so I'm gonna have someone draw that for me because I can't draw for shit.  That would be Tyler Ayres, our resident animator, and his apprentice Connor Gartland,  Sam Kreps can draw, too, so I can ask him (and so can you).  Stephen Toropov knows a good story when he sees one, and can spruce it up to make it more vivid.  Madison Koenig can do that, too, and she just returned from Feminist Summer Camp (really!), so she can spin it like the Bechdel Test for Women in Movies.  Watch it; maybe we can turn that into The [Your Name here] Test for PD in Movies.  Jennifer Bell is our social media maven, along with Ali Ziyati.   Yan Zheng keeps track of everything.  You can learn more about the PD Narrative Gang by clicking on The Research Team at the top of the page.

There he goes again!

Louis CK

Speaking of movies, we're also asking you to troll the mediaverse looking for things that deserve to be shared.  Compelling PD stories, definitely, but random media references as well.  I was watching a new episode of Louis CK a couple of months ago, and out of the blue, he makes a reference to PD.  Was not expecting that.  I was listening to NPR on Saturday, and wham!  A reference to The Parkinson's Voice Initiative!  You know how your head snaps around when you see/hear something about PD?  We want those stories, too.  We want you! -- to be a part of our research team.  No hassle, no deadlines,  and I don't take attendance.

So take a look at our videos (we'll be putting up new ones every other week or so, and describing what happens in between), and make some comments if you want, and send us your stories.  There's a button for that at the top of the page, too.