Near the top of the never-ending list of infuriating and frustrating things about having ALS is that there isn’t anything you can do about it. There is no cure, no magic elixir you can take to make it go away, or no hope of ever hearing the phrase uttered by your favorite neurologist, ‘Take two and call me in the morning.’ Hell, doctors don’t even know how ALS starts in someone much less how to eradicate it. There is only one FDA approved drug out there, Rilutek, and according to the doctors I’ve spoken with, that drug only prolongs a patient’s life for an additional three to six months.
So, what’s a guy to do? Well, if it was up to me, and in this case I believe it is, I would leave no stone unturned in regards to trying any and all possible remedies, running the gamut from western medicine to alternative and traditional Chinese medicine. At this stage in the game, I am currently participating in at least four different therapy sessions a week, from acupuncture to physical therapy to chiropractic kinesiology to medical chi gong therapy.
As far as the western medicine model is concerned, the name of the game is symptom management. And to that end, that model has, so far, served me well. My doctors made sure that I had in my possession, when I needed it, a cane, a wheelchair, an assistive speech device, and plenty of rilutek. I was even offered the opportunity to volunteer myself for a clinical drug trial at the ALS Clinic at UCSF. After checking my social calendar for the coming three months and after consulting with my handlers and my Vincent Chase-like entourage, I decided to become a guinea pig for the cause.
I have what’s referred to as bulbar onset AlS; the kind that affects the throat and tongue. Two of the symptoms of this peculiar onset are uncontrollable laughing and crying. I can vividly recall royally pissing off Fehmeen around the time of Emma’s arrival home because I could not stop laughing as the baby screamed when Fehmeen tried to change her diaper. I also remember bawling, ahem, like a baby, at last year’s graduation ceremony and not being able to do a damn thing to stop it.
The major goal of this particular clinical drug trial is to test and see if the drug, a mixture of quinidine and dextromethorphan, actually decreases or eliminates the laughing and crying episodes. After a rigorous screening process, Do you laugh and/or cry uncontrably? Well, yes, I do. Great, you’re in. , I had to report to my patient liaison, the lovely and talented Claudia. Her office was located in a separate building on the UCSF campus than the ALS Clinic I usually attended so going there the first time was kind of like discovering a bonus track on a cd; more tuneage for your music-buying dollar.
I filled out several questionaires (Question 1. Do you laugh uncontrollably? Question 2. Do you cry uncontrollably? and on and on), took a two hour intelligence test (Being a teacher, I quite enjoyed this one. I especially liked having four minutes to write down as many words that begin with the letter S as I could),
had to pee in a cup (When your hands don’t work as well as they used to, this task becomes more of a challenge, let me tell you), took a blood test (I never used to look when they extracted the blood from my arm but now I quite enjoy the process), and I took an EKG test (1 handheld EKG device + 8 electrode stickers = 15 minutes of motionless fun).
The last step in the process was to get the neurological once over from my neurologist Dr. Catherine Lomen-Hoerth and I was good to go. Claudia handed me a blister pack full of pills with the instructions to take one pill twice a day. She also gave me a diary, in which I was to record daily notes of how many laughing and crying episodes I experienced while on the drug. With the goods in my hand, I then committed to returning in about three weeks with a completed diary and three pill-less blister packs and I said goodbye.
An interesting thing about participating in a clinical drug trial is that there is no guarantee that you are even getting the actual drug at all. In this particular trial, I had a 33% of receiving the full-strength pill, a 33% chance of receiving the half-strength, and a 33% chance of receiving the placebo. Solely based on my own personal observations during the three months I was on the drug, I am certain that I received the half-strength version because, while my laughing and crying spells certainly diminished a bit, they did not lessen to the degree that I perceived a full-strength dose should have.
At the end of the trial last week, I returned to Claudia’s office and repeated the same battery of tests and exams. I improved my performance on the two hour memory test, I made another mess out while valiantly attempting to pee in a cup, and I learned that neurologists don’t really get my attempts at humor. As was my option from the beginning, I chose to continue taking the drug off-label, this time with the guarantee that I was getting the full-strength version. It’s only been about a week since I began but I have noticed a sizable difference in my ability to control my laughing and crying. Who knows, maybe it’s going to work; I’m just glad that I tried.