Here it comes - - Judi's Hill !

In which Dr. Judi Haberkorn, a (former) social work professor at Ohio University, must navigate a  steep hill every single day just to get to her office, not to mention other places she'd like to go.  Judi has been living with a variant of Multiple Sclerosis for 7 years and has been in a wheelchair for 2 of them.  How does she maneuver  around the physical and mental obstacles in her way?

Click here to watch Judi's Hill video

Judi's not the only one with accessibility issues.  We here at OU just finished a Disability/Accessiblity Day, where others with mobility issues raised their voices.  Judi skyped in for our panel, and gave the students an earful about her experiences here and how they might be managed by others in the future.

Next week we'll have a post and a video about The Disability Awareness Day, 
so stay tuned!

D.I.Y. PD: Tom's Woods

Last week, we deconstructed three different treatments for Parkinson's Disease. Here's someone who takes a different approach. Meet Tom Lovdal, who finds hope and dopamine in his daily run through the woods.

Superhuman or Cyborg?

Here’s what makes online media so fantastic:
Just when you think
        you’ve got something all figured out,
                something else comes along
                          and makes you have to rethink
                                  everything.

Oh, wait. That pretty much describes Parkinson’s, too. Well, then, let the fun begin!

The PD Narrative Gang has noticed a dramatic increase in DBS videos lately.
         That’s Deep Brain Stimulation Surgery.
         Yikes, right?

And it’s not just its online presence, either. The three biggest PD support groups around here
have recently featured neurologists who specialize in it, people who’ve had it, and people who
are waiting to have it done to them.

       What happened?
              It wasn’t even on our radar a year ago!
                     And now it’s everywhere!
                           Were we not paying attention?
                                WTF?

Thus began a group viewing frenzy, and we started talking about the story structure these
videos use: before/after, on steroids. You’re probably most familiar with this in advertising:
“Before I started using Brand X, I was miserable/bored/ugly,
but now look how happy/productive/beautiful I am!”

We’ve got 3 examples for you and yes, there will be a quiz at the end.

A couple of weeks ago, NPR posted this story about DBS:

THE MAN WITH THE ‘BATTERY-OPERATED BRAIN’:

So here’s AJ’s homemade 3-minute video, where he sits in an armchair and matter-of-factly
explains his situation: he’s had PD for 10 years and loves the results of his DBS surgery. Then,
flourishing his remote, he turns the battery pack off! And thus returns to his pre-op, PD-addled
self. Although he claims to be having a hard time articulating what’s happening, he’s actually
pretty coherent, considering all the flailing going on. He even manages to crack some jokes
about martinis (shaken, not stirred). Then he struggles to regain control of the remote, agghh,
agghh, can he do it?? Yessss!

So there you go: Before (normal-with-DBS) and After (alarming-yet-affable Frankensteinwithout).
You know, everyone with PD fantasizes about what it would be like to go back to pre-
PD normalcy. or even what it would be like to turn off all the meds just to see what would
happen. The first option is impossible, and neurologists don’t recommend the second unless
you’re detoxing in the hospital.

Up Next: another snappy title:

THE INVISIBLE MR. PARKINSON’S

The “unknown” here refers to the lesser-known non-motor symptoms of PD: insomnia, executive
dysfunction (kinda like ADD), and anxiety, which are actually more vexing to PDers than the
visible tremors. “Unknown” also refers to people’s reactions to the toxicity of the meds used to
control those symptoms: hallucinations, compulsive behaviors like gambling, sex addiction, and
shopping. Here, a mild-mannered Dutch guy named Par explains his situation to us and, like
AJ, at first he *seems* normal (on meds). Then he disconnects his stomach tube (a common
drug delivery system in Europe, so not much is made of this), leaves the room (an hour
elapses), and comes shuffling back to his chair. What follows is an emotionally riveting 30
seconds of raw vulnerability. And unlike AJ, who returns to “normal” with the flick of a switch,
Par remains debilitated and diminished at the end of the video.

Unknown Mr. Parkinson’s tone is darker, even though the room is sunnier and the production
values higher. Overall, It’s a more traditional, professionally-produced story, and includes
experts explaining PD -- in Dutch with English subtitles – with impressively-animated diagrams.

Anyway! With the Netherlands and New Zealand – and socialized medicine -- under our belts,
stomach tubes and battery packs attended to, motor and non-motor issues duly noted, let’s take
a look at what’s happening in the US of A.

REAL LIFE WITH PARKINSON’S DISEASE

This one breaks all the rules for viral video glory, mainly because it clocks in at 32 minutes, with
no close-ups, and an invisible narrator behind the camera who never stops talking.
It’s our favorite! And, although we firmly believe that it’s your civic duty to watch this in its
entirety, we understand how busy you are, so we’re accommodating your lazy ass busy
schedule with a few highlights. The video opens in a man-cave, with Alan hunched in a chair,
unable to move.

03:50 - Alan explains the heartless web of bureaucracy that prevents him from getting essential
meds. Even though he’s on disability, his social security money counts as “making too much
money” to qualify for Medicare in the state of Indiana.
06:05 - Tom explains their clever plan to outwit said Bureacracy, which involves “drivin’ all over
the freakin’ country.”
07:16 - $1,400 a month disability check minus $2,000 a month for medications = ???
11:38 - Alan finally manages to push himself out of the chair (“slingshot engaged!”) and quotes
Ricky Bobby: “Shake ‘n Bake, baby!”
12:23 - “When you have a government that is more in tune to...FEEDING the RICH and making
them even richer, people like Alan suffer.”
16:15 -“This is not bullshit--this is PD.”
19:14 - Alan is practically swanning around the garage!

Unlike AJ and Par, the focus is on the traditional meds that most people use, and there’s no
magic before and after, just an unblinking view of Alan’s total disability, and his tenuous (and
temporary) return to “near normal.”

Although these videos feature different types of PD treatments (DBS, stomach tube, and pills),
there are certain similarities.
* All 3 afford a look at what near-total disability without medication looks (and feels) like.
* All 3 are aware that their symptoms may be misinterpreted: lan keeps promising that he’s not
faking it, that it’s not bullshit, and AJ emphasizes that his violent tremors are real.
* All 3 focus on the contrast between life with treatment and life without.
But, unlike the others, Alan wasn’t staging his pharmaceutical withdrawal to make a point, or to
highlight the miraculousness of a device. Life without medication is a real possibility for him.

Despite all the promises, and in keeping with Alan’s situation, we remain skeptical about AJ’s
ardent support of DBS. Remember when it was standard practice for TV physicians to
recommend cigarettes as a way to relax? When pesticides were routinely sprayed in
neighborhood ditches? When coal companies colonized Appalachia with the promise of good
jobs and cheap fuel?
And they always reassured us, each and every time, that all of this was perfectly safe and
scientifically sound. That it was good for us.

                                                  That worked out well, didn’t it?

                                                                  * crickets *

Behind the Scenes of a PD Narrative Shoot!

Today we have something a little different to show you all. Rather than presenting another polished, finished product, we here at the PD Narrative Project decided it would be fun to let you guys have a look at the process of preparing for and executing a PD Narrative Project shoot. There's been some chaotic construction going on around out offices for the last couple months, and we decided it would be an interesting and soothing background for an impromptu planning session. Enjoy the pictures!

The team looks over the day's notes

The notes in question

Jenny and Jen laughing at their own jokes

Contemplation... Can't you just hear the gears a-grinding?

Meet the youngest member of the team, Jen and Joe's son Ro

The gang rests in the shade

Conferring with Madison

In the viewfinder

Sidewalk Closed

The Overlord: Always Watching

The cover of our first album?

Stephen working on this very post!

STITCHIN' IT TOGETHER: David's Quilt

In which David, an avid woodworker and hiker, must give up his hobbies because his hands have become too unstable and his back too stiff. Not to be deterred, he finds a new creative outlet: quilting with the ladies in Nelsonville, Ohio.

Stay tuned after the jump for more about David and his fabric-based adventures.

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”

at

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.