An Update From Professor Steve Gey

The other day Paul wrote about the West Virginia Law Review's moving tribute and issue in honor of my colleague, the con law scholar Steve Gey, who has sadly been living with Lou Gehrig's disease (ALS) for the last year.  Some of you remember my blogging about a a group of FSU law students, alumni, faculty and staff who have been busy this spring securing sponsorships and training for a triathlon (the "Tri-for-Gey") to raise funds for ALS research.  (My wife Wendi has raised over $4400. Please consider donating generously in Steve's honor to her efforts here.)

Many people are wondering: How exactly is Professor Gey doing anyway?

The answer, which Steve has penned in his inimitable way for the legions of students and colleagues inquiring, appears with his permission below the fold. Let me give you notice that while Steve's answer to this question is at times humorous, the news is difficult to read.
 

Since I was diagnosed with ALS a little over a year ago, I have been the grateful
recipient of hundreds, if not thousands of expressions of goodwill from friends,
colleagues, former colleagues, and especially present and former students.
Unfortunately, I have not had the opportunity to respond personally to most of these
messages. I'm afraid my little disease has affected my efficiency more than I would ever
have imagined. I know that you all think that I speak too quickly, but I'm finding that my
voice-recognition software doesn't even come close to keeping up with my old typing
skills. Thus, your messages have been piling up, unanswered. It's getting downright
embarrassing. So when our fearless leader Kristina [Klein, FSU alum] suggested that I compose a short update to send to everyone on the growing Tri-for-Gey mailing list, it seemed like the
perfect opportunity to at least let you all know as a group how things are going. This
does not, by the way, substitute for the personal responses that I still intend to send to
everyone who has sent me messages during the last year. At the moment I'm still trying
to teach, and that pretty much takes all of my time and energy. One day soon, though, the
voice will finally fail and I will have lots of time on my hands. At that point I promise to
return to the stack of e-mails, cards, and letters. Until then. . . .

I suppose we should get the bad news out of the way first. For the first few
months after the diagnosis, I was able to more or less convince myself that I had
everything under control. My hands and arms slowly deteriorated, and I relinquished any
hope of winning a marathon, but in the early months I managed to work around these
minor disabilities and kept going pretty much at my usual pace. Things started to get
worse in the early fall of last year, especially when I lost the ability to drive.
Nevertheless, once I got used to riding with the dogs in the back of [FSU Prof] Rob Atkinson's truck,
even that loss became manageable. In the last two months, however, things have started
going downhill much more precipitously. The disease has now migrated from my arms
and hands into my lungs and throat. Swallowing is getting difficult, and breathing even
more so. On my last pulmonology exam, some of the functions of my lungs are down to
about 25% of normal. The breathing problems have also affected my voice. Although I
do not yet have the slurred speech that is common once ALS creeps into the bulbar
region, my voice is now almost always hoarse, shallow, and muted. The disease is
accomplishing what none of you could: it may soon actually shut me up. On top of
everything else, my hands and arms have now become almost totally worthless. Not only
do the students have to carry my books to class, they also have to turn the pages for me. I
can no longer shower or dress myself, and feeding myself is a comedy routine. I'm the
only person in the world who can have a food fight with himself. Here's the clincher:
over the last month I've lost 10 pounds, which makes my total weight loss during the last
year approximately 30 pounds. I've never exactly been plump, but if this keeps up I
won't get the chance to die, because I will just float away.

So enough of that. Now the good news. First, I'm still here. I know that won't
sound like much of a victory to most of you, but to me it's a roaring success when I read
the obituaries in the morning and I'm not in there. Also, I'm still teaching. In fact, right
now I'm teaching a full load, and I've had the Dean put me on the list to teach at least one
class next year. Hope springs eternal. I've also done my usual bunch of speeches and
symposiums in various cities this year, although I'm afraid that's over now. Traveling is
just too hard, so I'm just going to have to learn to enjoy the wonders of Tallahassee.
Where is the medical marijuana when you need it? I'm also still writing quite a lot, and
could write a lot more if I could just figure out how to teach my voice-activated software
to type "Justice Scalia" instead of "Justice Oh My Silly." (On the other hand, maybe the
software is smarter than I’m willing to acknowledge.) And finally, I'm still walking, even
if I am a little shaky. So maybe in several respects I have already beaten the odds.

The basic plan now is the same as it was a year ago: figure out how to deal with
an ever-diminishing number of body parts, until some doctor trips over a cure to ALS
while trying to develop a new and improved version of Rogaine. There have been brief
moments of hope on the medical front during the last year. Indeed, last month I applied
to get into a Phase IIb clinical trial of a drug called Arimoclomol. The company
developing the drug has had great success in the earlier phases of clinical trials, and one
of my legions of doctors expressed the opinion that this is the most excited that she had
been about an ALS drug in many years. In what has become a typical pattern, one month
into the enrollment period for the clinical trial, the FDA pulled the plug on the trial until
the company can submit additional animal toxicity studies to back up its claims about the
drug's safety. One step forward, two steps back. No other drugs are even close to being
approved for ALS, and of course major-league federally funded stem cell research will be
stymied for another year until you-know-who leaves office. In any event, my doctors at
Emory told me this week that my vitals are below the level necessary to get into the
Arimoclomol trial, anyway.

Right now, the doctors are focusing on trying to get weight on my bones and
trying to get more oxygen into my lungs. So I've been told to eat everything in sight, and
the doctors have prescribed for me a new breathing machine. They have also put me on
Rilutek, which is currently the only drug approved by the FDA for ALS patients. The
drug basically extends life a couple of months by decreasing the release of glutamate and
thereby reducing the damage to motor neurons. The doctors are also going to put me on
lithium, of all things. Just last week, my buddies at the National Academy of Sciences
published in this month's Proceedings a small Italian study indicating that lithium
completely halted the progression of ALS in a group of 16 patients in hospital near Pisa.
It's probably too good to be true, but maybe the lithium will at least make me a little bit
less crazy (!). I should add, though, that overall my doctors are not optimistic. They
have suggested that I consider whether I want to go on a ventilator as my lungs continue
to deteriorate, and also that I begin to think about whether I want to go into hospice. I
don't want to bum everybody out, but you should all be aware that there is at least an
outside possibility that this is my last Tri-for-Gey.

All in all, like the other unlucky souls who have been dealt the ALS card, the only
thing I really have going for me is blind faith, which is another way of describing
unrelenting, irrational stubbornness. If viewed objectively, given my deterioration during
the last year, it's probably safe to say that I'm on track to fulfill the usual prognosis for all
ALS patients, which basically gives me the life expectancy of a hummingbird. I've just
decided to act as if that's not the reality, and I'm happy to say that all of you are helping
me perpetuate my self-delusion. If you crazy people are still willing to get up at the crack
of dawn and jump in a frigid lake, and then run and ride yourselves silly, then I may as
well try to stick around to see what you all look like in wetsuits. So hang in there during
your relentless training. I'm with you in spirit. If we play our cards right, and get a little
lucky, you will all reach your finish line in little over a month, and I won't reach my
finish line for many, many years.