FEBRUARY 16, 2007
I made it to Nashville.
Eleven hours in a car is a long time.
It sucks when the FM part of your car radio doesn’t work.
All the sports talk radio shows spent the day yesterday talking about former NBA player Tim Hardaway and why he hates gays.
Trees look very pretty in the sunlight with a coating of ice on them. The same can not be said for highways. Thank God the roads were clean and dry.
I got here at about 5 p.m. Nashville time, which was about an hour after I was due to take my third Stalevo of the day. I staggered into the hotel lobby, happy that I had taken the time a few days ago to complete the “express check-in” thing on the hotel’s website. It turned out to be a futile gesture as there was a tourist couple in front of me experiencing some sort of problem that took the sole clerk at the desk some 15 minutes to sort out. But once it was MY turn, check-in was a breeze!
Got to my room. Took a Stalevo. Got a bag of burgers. Watched a movie on Showtime. Fell asleep at 8:30.
Today, feeling more or less fresh, but with a sleep hangover. Meds don’t seem to be working quite as well today. I’ve got a work laptop with me, so I’m connected to the office, checking e-mails, uploading sound files as I would ordinarily do on a Friday. Ain’t technology GRAND?
At 1 p.m. local, I will meet with Dr. P. David Charles, neurologist, lead researcher on this study. At 2 p.m. I’ll meet with Dr. Peter Konrad, the neurosurgeon who will become intimately acquainted with my brain if I enter the study and am selected for surgery. At 3 p.m. I will meet Dr. Stuart Finder, the medical ethicist, who will — I suppose — ensure to the satisfaction of all that I know what the risks are.
On Saturday I will meet with my book agent. Nice fella. Happens to have an office in Nashville. This will be our first face-to-face.
On Sunday I will swim in the hotel pool and otherwise vegetate.
Then on Monday, I go back to Vanderbilt University Medical Center to sign the consents — providing I don’t chicken out first. That’s what the 72 hour waiting period is all about, I suppose. It might sound good on Friday, but by Monday I might decide that I need this surgery like I need a hole in the head.
Two holes.
Then, on Tuesday, I will go home.
LATER THAT DAY
Such nice people, these doctors.
Seriously!
Met first with a very pleasant young lady named Chandler Gill. She’s the coordinator for the clinical trial. We discussed the protocol, why I want to take part, all the stuff you would expect would be discussed.
Then I met Dr. Charles. Nice guy. Youngish. Has identical twin sons. VERY optimistic about the research. He really did a great job explaining the theory behind the possibility of neuroprotection from DBS. And although it’s just a theory — it makes great sense!
Then I met Dr. Konrad — who basically wrote the book on this procedure. He gave me a copy of the book. And he laid out the whole procedure, start to finish. Very steady hands. I like that. Clean fingernails, too!
Then I met Dr. Finder — and it was his job to ensure that I was fully informed and was making a wise decision based on my needs and expectations.
Very nice afternoon. We’ll get back together on Monday and I’ll sign the consents. Unless I chicken out. Which I won’t.
Probably.
FEBRUARY 19, 2007
Oh my God!
What have I DONE?
I SIGNED “THE CONSENT FORM!”
No! NO!!! NOOOOOOOO!!!!!!!
Heh! That was written for the benefit of the medical ethicist, Dr. Finder. The man was relentless! And that’s just what you would want from someone whose job it is to make absolutely certain that YOU are absolutely certain that you are making a decision like this for the right reasons.
I’m sure.
Absolutely.
I’ll explain.
A large part of my job as production manager of the National Institutes of Health Radio News Service is writing radio news stories and public service announcements about the importance of clinical research.
As a person suffering from a condition where research holds so much hope for a cure, I felt it would be hypocritical of me to not take an opportunity to participate in clinical research if presented with a chance to do so.
Also, think about the concept they’re trying to prove with this particular clinical study into the safety and tolerability of deep brain stimulation in early Parkinson’s Disease. This pilot trial is designed specifically to collect the preliminary safety and tolerability data necessary to conduct a future phase III clinical trial to investigate the hypothesis that deep brain stimulation of the subthalamic nucleus in subjects with early Parkinson’s will slow the progression of the disease.
If there’s a CHANCE that this procedure could slow the progression of PD, then I want a piece of the action! I am clearly in early Stage II (in the Four Stage Hoehn & Yahr Ratings Scale). I have a long way to go before being profoundly handicapped by this disease. What a wonderful thing it would be if this procedure slowed — or even HALTED the progression! And how wonderful it will feel to have been on the cutting edge of this thing if it turns out that deep brain stimulation someday becomes the treatment of choice for patients — earlier rather than later in the course of the disease.
There are risks. For one, I could have a stroke and die. Right there on the table. Boom. Gone. Or I could be profoundly crippled as a result. Or there could be an infection of the electrode leads or the implanted neurostimulators which would be placed in my chest. And there’s a bunch of other stuff that could go wrong. And it might not work! But it probably will. The odds are in my favor. And it beats doing nothing.. And for me, at least, that tips the balance.
Back home tomorrow. Back down here sometime in March for a couple days. Then April 10-18, I’m here for the 8-day drool-fest… I mean, 8 days without medication.
But the first step has been taken.