Thursday, September 06, 2007

An all-too-familiar story

I thought I would put this first-person report as a post, because he describes very well what many of us are going through:

I am a 29 year old severe chronic stutterer. After many years of ineffective sessions with various incompetent therapists, trying a couple of those expensive, ludicrous “miracle cure” devices, psychics, witch doctors, benzodiazepines and horrible anti-psychotic meds; I have grown rather hopeless and apathetic towards the idea of my affliction ever significantly improving and completely stopped keeping up with the latest developments and events in the stuttering community.
In a way, losing the hope actually helped me, by making me realize that I am just going to have to live with this condition and making me stop putting off my life until I’m “cured”. I decided to get out there and do the things I want, without worrying what others are going to think of the way I look (talking about the secondaries) and sound.
I now have a job that requires a decent amount of communication and no longer have avoidance issues when it comes to things such as ordering at restaurants, asking for help at a store, getting a drink at a bar, etc. I still have issues with meeting new people and phone conversations with strangers, but I am improving there as well.
Unfortunately, stuttering is still a major hindrance to my social life, especially when it comes to attracting females. It’s definitely wrecking my “game”, which is a major issue, since I would like to meet a nice young lady and start a family within the next few years.
Any way, recently I finally decided to get on the net and catch up on all the latest stuttering-related news and developments. This is how I discovered this very informative blog.
I also learned of Pagoclone and dug up as much info on it as I could find on the web. I am cautiously optimistic and even a little bit excited about it. The prospect of it improving my fluency by even 30% or so is very appealing, because it would make it a lot easier for me to control the secondaries and successfully implement fluency shaping techniques. Because of this, I recently submitted a trials volunteer form, but have not heard any thing back yet.
I am very curious to hear from the people who participated in the previous trials, for the obvious reasons, but also because I am wondering whether it would be a good idea to invest in some Indevus stock right about now. If Pagoclone does get the FDA go-ahead and goes into production, how big is it going to be? Is the market big enough for Indevus to make huge profit off of it? If it going to become the new Ritalin and be overzealously prescribed to every 4 year old who has a minor disfluency? What do you guys ?


Gustav said...

Up to now, I had opportunity knowing through the TV only two persons who participated in the previous trials:

1) John Ohman
2) Ken Steinhardt

Anonymous said...

I've told the positive side of my son's combination of Lexapro, adderall and fluency master. Initially with just the fluency master-- he expected to be fluent enough (cure) that he could compete in a poetry reading (I'm not sure what to call this--it was an interschool event in this area). He could not do it (days after receiving the device). It may have been that, or ADD issues, but the next few months were so hard. It wasn't just the speech, but the loss of control over school/ exacerbation of ADD, etc... Nearly 9 months later, lots of supports, medication and the Fluency device, it's hard to believe that awful spot every happened, but it did.


Tom Weidig said...

Hi Gustav,

I dont give much on the TV interviews. It is similar for patients of stuttering therapies. Just after therapy and when they are put in the public spot, they focus and are very fluent.

I am more interested in first-person reports over a longer period of time.


Anonymous said...


I agree with you that these news interviews/reports are just a bunch sensationalist, superficial hype, set up in ideal, controlled conditions and carry very little informational value.


Do you realize that there is quite a bit of evidence which suggests that both SSRI’s (Lexapro) and amphetamines (Adderall), increase the level of disfluency in stutterers and even cause people to begin stuttering?

Also, I tried the Fluency Master a while ago. I had to drive 500 miles to get it from this really slimy, evangelical Christian licensed therapist/dealer. She had a bunch of Jesus memorabilia all over home office and actually asked me if I was a Christian, which I thought was very unprofessional. Nevertheless, I gave her permission to video tape and distribute the initial interview and then the one after the Fluency Master was used. My fluency was awful during the initial interview – I was blocking on every other word and the secondary behaviors were horrendous. In fact, for some reason, I was doing a lot worse than usual.

Then, I put on the Fluency Master and she adjusted it. Just like that, I became perfectly fluent. The last time I was that fluent, I was a kid, my stuttering was a lot milder and I was going through one of my good fluency phases. It was an amazing feeling and almost seemed like a miracle and I really wished that it was, that from now-on I would be speaking like this, but at the same time, the jaded skeptic in me realized that it was too good to be true. The therapist acted very excited and kept looking at the camera. I am sure that it all made an amazing promo material for their little operation. If you showed that before and after videos to anyone not too familiar with stuttering, there is no doubt that it would blow their minds and convince them that it was “the universal cure” for this affliction.

Any way, she sent me home with my new $2000 hearing aid, where I started wearing it to school (college courses), having to explain people why I am wearing a hearing aid and a microphone taped to my neck. No big deal, really. In fact, I now loved speaking. I couldn’t get enough of it - deep philosophical discussions, small talk, any thing! I became a regular chatter-mouth. There was just so much that I needed to say, built up over so many years of silent avoidance! It was a good feeling, a good thing and you know what they say about all good things.

Over the next couple of weeks, the device began to fail me in speaking situation after situation. It was very frustrating, but not completely unexpected. Eventually, my level of disfluency returned to the pre-device levels in all instances. I believe that the device worked through the novelty factor alone. It changed the way I heard my own voice, distancing myself from it. The mechanism of action here seems to be similar to the one in the experience of fluency when a stutterer acts (plays a role) or fakes an accent. It works as long as it remains a novelty. Unfortunately, as you get used to the sound of your “new voice,” whether it’s being modified by a device or a fake accent, the novelty wares off and your typical level of disfluency returns. It’s a fascinating phenomenon. Factors like this, is what makes our affliction so hard to understand for any one who does not have a first hand experience with it.

-Silent P.

Anonymous said...

Could this go under the --there are different causes for stuttering?
Alex's speech became much worse with stratera--significant increase in stuttering and uncharacteristic anger. He has been without the fluency master for 2+ months, because he lost the device, then lost the ear piece, found the device, but could not find the ear mold. We had it redone and it arrived today. I have noticed only a slight increase in stuttering, but when it occurs there are odd tic like behaviors--mouth moves up and down, lips curled in over teeth slightly ... He says that his stuttering is much worse at school than it is at home. He is a fairly outgoing teen, participates in class, he does quit more public speaking though.
The lexapro has had the most dramatic positive effect. With the fluency master and without the adderall, he seems nearly typically fluent.
With the addition of the adderall, even I can not tell that he stutters.
We were only willing to have him try the adderall because school was becoming so difficult. It really surprised me that there was this positive effect. Probably that he could float the techniques and keep focused on the material/ school work/ conversation etc...
I would really like to understand the neurology/ biochemistry of what has happened.
There have also been really negative reactions to other medicine (hyoscyamine) that made it impossible for him to speak at all--one complete block. There is also some negative effect to hystamines.

btw--The SLP who recommended this is Jewish--works for a state agency and is very professional--no connection to religion and FM I think)

Anonymous said...

"I have noticed only a slight increase in stuttering, but when it occurs there are odd tic like behaviors--mouth moves up and down, lips curled in over teeth slightly ..."

It sounds like he's beginning to develop what are called "secondary behaviors":

"He says that his stuttering is much worse at school than it is at home."

That is rather typical. We tend to stutter a lot less around people and places that we are most comfortable with/in.

-Silent P.

Anonymous said...

Silent P: any therapist worth their salt would have you back in for regular updates on how the fluency device was functioning and alter the feedback. Some of the information about these devices says that they do need to be adjusted periodically and altered because, yes, you do get used to the sound. Sometimes the frequency and dlevel of feedback need adjusting.
In the UK most of the sellers/distributors of the fluency devices recommend that speech and language therapy continues while you use the device so issues like this can be addressed.
Best wishes.

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Bryan Ramirez said...

My name is Bryan Ramirez. I have stuttered my entire life. Luckily I had amazing parents, funny cousins, was a talented athlete, and a lovable kid. So I never faced extreem ridicule. I always wanted to be a film maker so I went to film school. I remember a teacher in school telling me that I could never be a director because no real actor would ever take me serious because of my Stutter. Well, I have now made 2 feature films going to theaters next year. But thats not why I'm writing this. I accomplished this with my stutter and I believe we can accomplish great things with this hinderance. BUT, in a recent research experiment, I tried Aderall. And that day, I found that it almost COMPLETELY eliminated my stutter. I mean I couldn't even feel a stutter coming on, and I was amazed. I'm posting an interview I recently did to show the results. and please keep in contact id you need a little positive guidance.

heres my contact and site.