Fight and Flight: Running for Dad

Running is, considered through the wide lens of human history, an almost ridiculously useful ability. 

As a crucial part of the fight-or-flight reflex (or at least the flight part), it kept our species from being eaten by, well, most anything.  Saber-toothed kangaroos, or some such.  From being eaten, regardless.  Or take for example the incredible Incan empire of South America.  The Incans never invented the wheel, but they built miles and miles and miles of roads that still survive to this day, to connect a massive, sprawling empire.  Why roads?  For running!  Incans used runners to carry messages between their far-flung cities.  Again, running became a crucial ingredient in human civilization, allowing communication across vast distances.

Today, however, I have a cell phone, and my only fight-or-flight-type reflex is curling up in a whimpering ball on the floor.

In other words, I’m not a runner.

Which is why I hesitated when my sister called me and said, “Would you want to do the Newport Bridge run with me as a fundraiser in support of Dad?”

My sister is no more of a runner than I am.

So, I said yes.

And then curled up into a whimpering ball on the floor.

It seems funny, perhaps, that in a blog devoted to fatherhood (and beer, and left-wing politics, and writing, and, well, you get the picture) I’ve devoted very little time to talking about my own dad.  But I know he’s always been a private man, and probably wouldn’t have wanted me throwing stories about him up all over the internet.  (Like I am now!)

Or post pictures of him...

But several years ago, we started noticing Dad acting a little different.  His walk was a little uneven, his hands shook, his speech sounded a little slower, even a little bit slurred.  He went to see some doctors, finally. They thought initially it could be Parkinson’s Disease, and I thought, Just like Michael J. Fox!  Then, they diagnosed him with Progressive Supranuclear Palsy, or PSP.

And I thought, What’s that?

Progressive Supranuclear Palsy is a progressive (duh!) neurodegenerative disease, in which brain communication to the body is interrupted.  It is considered a Parkinsonism, or a Parkinson’s Plus syndrome, which just means that it can easily be mistaken for Parkinson’s because the symptoms are so similar.  But while similar, and while both diseases seem to be connected to certain proteins in the brain that somehow damage nerve cells, they seem to be caused by different proteins.  And, most importantly, treatments for Parkinson’s don’t seem to work well, or at all, on PSP.  In fact, PSP has no widely effective treatment, and no cure.

A couple years after this diagnosis, as we watched the disease progress, I was talking to Dad and he mentioned that they thought maybe he didn’t have PSP after all.  From the way he was losing control of one side of his body faster than the other side, his doctor thought it could be Corticobasal Degeneration, or CBD.

“Oh,” I said.  “Is there a treatment for that?”

“Nope.”

“So, instead of one three-letter disease with no cure, you might have a different three-letter disease with no cure?”

“Or both.”

“How do they find out?”

“They won’t know until they look at my brain after I die.”  Then, my dad added, as only he could, “Someone finally wants me to give them a piece of my mind.”

So, PSP, or CBD, no treatment, no cure.  And very little research being done.  For example, a search of clinical studies through the National Institutes of Health website yielded 65 studies on PSP.  And 1883 studies on Parkinson's disease. 

Why?

Simple.  Over a million people, including Michael J. Fox, suffer from Parkinson’s Disease.  Estimates for PSP are around 20,000 people.  Where do you think most of the research money goes?  Not that I don’t understand; it makes completely logical sense.  If you only have a limited amount of money, you target that money to where it can do the most good.

That doesn’t stop me from wishing, hoping, that some breakthrough could happen, that the progress of the disease could be stopped.  That some of the symptoms could be eased.  That Dad could do something as simple as put his arms up and wrap them around his grandkids.

No, really, he's going to hate that I posted these...

But little research is still some research, and it may well fall to private fundraising, rather than reliance on government funding, to provide for further research.  Which brings me to why we’re running.  

We’re running (or at least shuffling in a very funny manner) across the Newport Bridge on October 22nd in order to raise awareness and money for an organization called CurePSP.  None of the money we raise will do anything directly, or probably even indirectly, to help Dad.  Instead, our hope is to help some future family, like our own, not have to experience this.  That some future dad might get more of a chance to enjoy a retirement doing what he loves, whether or not that involves antique firetrucks (though I kinda hope it does). We hope that through organizations like CurePSP, research will continue to at least increase the quality of care and quality of life for people with PSP, CBD, or similar diseases, or even find effective treatments and, someday, a cure.

Running over the Newport Bridge seems particularly fitting.  When he was working, keeping the lights on for the bridge was one of his jobs.  Dad was always being called out at night to fix those lights, which I think at least sometimes involved him climbing up the suspension cables.  I recall he was even featured in a local magazine article on the most dangerous jobs in Rhode Island.  The bridge seems like the perfect thing to feature in this run in his honor.  It’s also two freaking miles long, while I get winded chasing Leo down the aisle in Target.  And the whole course from start to finish is four miles, which makes me wonder just what I’ve gotten myself into.

But, I downloaded the Couch-to-5k app (finishing up Week 5!), set my alarm for 5:30am, and loaded some inspirational music to my ipod (you know, the usual stuff: Everclear, Better Than Ezra, the Muppets, Randy Newman…).

And so, I run.  Because running is part of our natural instinct, fight or flight.  But in Dad’s case, he doesn’t have a choice.  He can’t run.  So we will.

Visit our page on crowdrise to find out how you can help.  Thanks.