Sunday, May 24, 2009

guinea pig...

a couple of months back, i got a phone call from a medical research company. i had contacted them about five years ago because i had stumbled across something interesting while doing some web research on stuttering. when i contacted them five years ago, they were in the initial stages of a clinical trial for a drug to treat persistent developmental stuttering.

the drug, pagoclone, had been developed and tested as a mild anxiolytic, but the clinical trials resulted in the drug manufacturer declining to proceed with marketing the drug, not because of any safety concerns, but because as an anxiolytic it did not bring anything to the marketplace to justify further development. in one of those twists of fate, a doctor in california had a couple of volunteers for the anxiety study who stuttered. the doctor noticed that during the study, while they were on the drug, their stuttering improved markedly. when the study ended and the drug was withdrawn, the stutterers returned to 'normal.' based on those results, the drug company made the decision to pursue marketing pagoclone for the treatment of persistent developmental stuttering.

i had contacted the atlanta institute of medicine and research in 2004 about participating in the study. i made the decision then that i would not participate, in part because the trial would be conducted from atlanta and making repeated trips to atlanta with my ten year old car did not seem like the best idea.

in early march, i got a call from the atlanta institute and was asked if i would be interested in participating in this stage of the trial. i agreed to sign on as a volunteer, though in truth, i had not fully considered how long a one day trip to atlanta and back would be. i made the initial trip to atlanta on march 18, where i was given a physical examination and videoed to determine that my stuttering met the needs of the study. on march 20, i got a call from wake research associates in raleigh asking if i wanted to participate in the study. given the fact that it is half the distance to raleigh that it is to atlanta, i dis-enrolled in the atlanta study and enrolled in the raleigh study instead. i had to have another physical examination and i was videoed stuttering again.

this past monday, i went back to raleigh, was videoed stuttering again and given my first three courses of gel-caps. as the study is being conducted as a double-blind for the next 32 weeks, i do not know what i am taking at present. there are three groups in the 32-week study, one group gets 30mg b.i.d., one group 60 mg b.i.d., and one group takes a placebo. at some point during the study, half of the first group and half of the second group will be given a placebo for 15 weeks, while half of the palcebo group will get 7.5mg b.i.d. for 15 weeks.

the hardest part of the study is being videoed stuttering. the instructions are to speak in my normal voice and not use any of the tricks or devices that i have used to not stutter. the difficulty with that is two-fold. first, being videoed stuttering is very stressful. i've stuttered for over 50 years and i still don't enjoy it. it is still personally upsetting and embarrassing. the other thing is, i have spent most of the last 50 years trying not to stutter. i have tried so many different strategies that i can't even remember what they are.

the reason that i agreed to participate in this study in the first place was not necessarily for myself. i have pretty much made my peace with my speech. it no longer dominates my life as it did at one time many years ago. it took a little time for me to realize it, but there are much, much worse problems that a person could have. given that, stuttering is hardly worth the concern.

my reason for participating in the study is because i recognize that this drug has the potential of being a real game changer for some people. i remember what it was like as a teen and young adult struggling to find a place in the world and being so dreadfully self-conscious about my speech that i actually allowed it to impact practically every aspect of my life. if by participating in the study, i can help get a medication approved that could ease the way for someone's child to have an easier passage through the trials of early adulthood, i am happy to be on board. no one should wish they could end their life because of the way they speak.

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