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?
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!
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.
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.
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
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.
