This is the end..... (to be continued)

The Pagoclone study is wrapping up - with results the drug company finds less than compelling, according to my contact at the research center that's been administering my participation in the study.

Many subjects, he tells me, have reported similar effects as those I have experienced: reduced tension in the larynx and/or articulators and at least some improvement in fluency. These positive effects are not powerful or compelling enough for the drug company to push for FDA approval at this time. My contact thinks they will engage in another study at a higher dose of the drug, with the hope that it will yield more promising results.

I am on my last three bottles of Pagoclone and will return to the research center in November for a final visit.

Control

For reasons generally beyond my control, I stopped taking Pagoclone for three weeks.

What happened?

Within a few days I noticed I was stuttering with greater frequency and intensity. I became aware of a general tightness in my throat and (to a lesser degree) articulators that I believe ontributes to disfluency.

I tried using some of the techniques I generally employ to prevent (as in Airflow Technique) and minimize (as in Precision Fluency Shaping) stuttering.

Without Pagoclone, I found it more difficult to apply these techniques - more difficult to maintain composure and exercise control over my speech.

Back on Pagoclone for one week now, and I'm starting feel like I'm getting back on track.

Stuttering is Cool - Podcast

I used to be a frequent listener of many podcasts a few years ago:  Daily Source Code was part of my commute each day and Dawn and Drew were friends I'd never meet. But then somehow I got out of the habit of listening and pretty soon they were but a distant memory....

Anyway, No Agenda rekindled my interest in the medium (though, in truth, I generally listen to the stream rather than the podcast)  and now DSC is back, albeit sporadically. And I've found a stuttering podcast that caught my interest: Stuttering is Cool.

Daniele Rossi hosts this show from Toronto, where he incorporates conversations with and interviews of people who stutterer in a free-form, entertaining show.

The current episode (#79) is a really interesting conversation with a friend in a busy restaurant. Danny's friend Jaan describes his experiences with speech therapy programs like Precision Fluency Shaping and his largely independent efforts to gain better control of his speech.

Jaan does a great job of managing his speech - he describes the effort in terms of timing and coordination. 

I totally get what Jaan is saying, and I'm impressed by his dedication. Take a listen to this show, and I think you'll agree.

Danny is a really creative and interesting guy. He and I spoke about Pagoclone the other day - parts of our conversation will likely appear in a future episode. I'll let you know when it's posted. 

My Starbucks barista just brightened my day

I'm not a daily customer, but the people at my local Starbucks know me well enough from my once-a-week-or-two visits.

One barista has always been particularly friendly. She told me once that her little brother stutters, and to take my time placing my order, that she's in no hurry.

She's really a great employee, as evidenced by the huge spread of MUGs on her cap. But anyway, today I popped in to get a coffee, placed my order, and she burst out - "You sound so good!!"

It was then that I realized I had been totally fluent in exchanging greetings and placing my order.

I've been on the higher dose of Pagoclone for about 8 weeks now (.6mg, twice a day), and I am noticing substantial improvements in my ability to manage my speech.

Let me be perfectly clear:

I still stutter.

Pagoclone is not a stuttering cure.

But Pagoclone does help me exercise greater control over my speech. Specifically, I am experiencing a substantial, sustained reduction in tension in my larynx and (consequently, I believe) my articulators.

My overall tension level seems lower as well. And as a result, I am better able to employ the speech management tools I've learned in a lifetime of speech therapy.

For the most part, I utilize the airflow technique developed by Dr. Martin Schwartz. Many traditional speech therapists don't give this guy his due, but I believe his stuttering prevention approach is rock solid.

I'm happy to be continuing in the Pagoclone study. I have experienced no side effects or problems. I'll keep you posted. Thanks for reading.

The Whole Truth

When the good folks over at "The Stuttering Brain" posted information from a reader that the Pagoclone study was locked and results were known, my first thought was "Tell me it isn't true!" Well, not really, but I wanted to get that Dylan link in there.

Anyway, what I really thought was, "That's odd....  no one said anything to me about that." And as it turns out, no one said anything to me about it because.......   It's not true!

I met with my contact at my local research center today, and she confirmed that I am in week 16 of a 48 week open label testing phase. My participation in the study will (sadly) come to a close at the end of 48 weeks, but the study will go on until everyone in the program has reached 48 weeks of open label testing, according to my contact.

Even after all the participants have concluded the 48 week open label testing stage, it will take them at least a year to analyze the data they've gathered through these research centers before (hopefully) presenting it to the FDA.

Just wanted to squash the rumors that the study has wrapped and results are known - the Pagoclone study is definitely still going and the analysis is yet to come.

Oh, and it's working for me. More details on that in my next post.

The End is Near?

There's been some talk about pagoclone over at Tom Weidig's excellent blog "The Stuttering Brain" recently. 

http://thestutteringbrain.blogspot.com/2010/03/pagoclone-data-locked-results-known.html

I can't confirm his reader's information about the Pagoclone study closing. I'll try to find out more information from my local research center and will advise. 

Does it run in the family?

Interesting news from the U.S. Government's National Institutes of Health; it seems that researchers may have identified a genetic link to stuttering.

Read more about it here:

http://www.nidcd.nih.gov/news/releases/10/02_10_10.htm

Research is ongoing, and the NIH is still recruiting participants that fit their specific requirements. If you think stuttering runs in your family, you may be able to help them with this research. Check out the details here:

http://www.clinicaltrials.gov/ct2/show/NCT00001604?term=00001604&rank=1