Sunday, March 13, 2011

Habit or Neurology?

I may have posted about this before, I can't really remember. There are times in my day when I am completely fluent. I do not use fluency tricks, I don't block, I don't struggle with certain consonants or words...everything works just as it should and I sound like a perfectly fluent individual.

Does this indicate that I have the capacity to be completely fluent 100% of the time? During those 100% fluent times, am I tapping into an ability to be completely stutter free? If I can EVER be completely fluent, does this mean I have the ability to *always* be fluent?

Let's break it down. If I find that I have a period of time of about 3 minutes in the day where I am completely fluent without using any "tricks" to be so...what is going on during those 3 minutes? Have I broken my stuttering habits for that 3 minutes...or is it that, suddenly, for whatever reason, the basal ganglia is properly working with the rest of my brain?

It is a frustrating idea that I am exploring here because there are times when I am completely fluent and those fleeting times make me think that I can be fluent all of the time. I just have to tap into whatever is happening during those fluent times so that whatever is happening...will happen ALL  the time.

How much of my stuttering is 100% habit and how much is 100% neurology?

Someone once asked me to tell them what the experience of stuttering is like, and this is the best analogy I could think of: Imagine that when you are walking down the street, you suddenly lose the ability to put one foot in front of the other, and you suddenly start stumbling...but it only last for 5 steps...and then you can suddenly walk normally again. What made you lose the ability for those 5 steps? You have no idea! What was different during those 5 steps? You have no's just that, suddenly, without warning and for no apparent lose the natural ability to put one foot in front of the other.

That is what stuttering is like to me. So, if I can be fluent for 3 minutes...does this indicate that I have the capacity to be fluent most or all of the time? I suppose there is no simple answer. It is probably the case that part of it is habit and part of it is neurological and I lack the ability to determine the proportions on my own.

What do you think?

Pagoclone...When will it be available? Ever?

This video below cites a 55% effectiveness rate for users and the video shows a dramatic decrease in the stuttering of the subject in question. I recently did research online and read an entry by Tom Weidig (from The Stuttering Brain Blog) on Wellsphere that didn't give me much hope. The trials are ended, the results were less than expected and, thus, it seems Pagoclone probably won't be available in the foreseeable future.

Video: Stuttering: Neuropharmacological Improvement

While I am no scientist and do not understand all of the trappings that surround and ramifications that result from such trials, it is somewhat frustrating that, even though the drug has been very effective for some and there are virtually no detrimental side effects that they can determine...the larger results determine the availability of the drug. So, for those who might greatly benefit from the drug...they are out of luck. Too bad.

I know that the following analogy will be far less than perfect, but it is similar, in my opinion, to the effects of melatonin. For many, it tremendously helps them to fall asleep at night. But, what if the FDA in the United States banned the supplement for resale simply because no empirical study shows it to be effective? That result would be unfair to those who benefit from melatonin.

Some 3 million individuals in the United States alone suffer from stuttering/stammering and, worlwide, about 1% of the global population stutters. We should all be given a chance to experience the possible beneficial effects of Pagoclone...even if it doesn't work for everybody.

Scientific progress can be frustratingly slow. Grrrr!

Friday, March 11, 2011

Headed for Neurology!

I recently obtained a new primary family physician since moving to the east coast and I have to say that I am very pleased with the recommended doctor I chose. The front desk people could be a little less terse, however. There are few things worse than hearing a person say, "Can I help you?" when you completely get the idea from the look upon their face that they truly have no interest in helping you. Is keying a rude person's car illegal? Just wondering.

One of the reasons I needed to get a primary is that my prescription for Propranolol was nearly gone and I needed a refill. For those unaware, I was diagnosed with Essential Tremor (sometimes called familial tremor) nearly 7 years ago and I take the medication for the tremors in my arms. Propranolol is actually a blood pressure medication, but taken at lower doses, has a wonderful suppressing effect on the type of tremors associated with Essential Tremor. Unlike those suffering from Parkinson's Disease, the tremors associated with ET are experienced while undertaking activity rather than at rest. For example, on a bad day, I have trouble holding a bowl of food with one hand and eating with another. The bowl will slosh around and I can hardly get a bite to my mouth. Thank you, Universe. Now, not only can I not say 5 words in a row without feeling like moron, now I have the added pleasure of rattling around like a spastic asshole, as well. Ah, life! ;P

Compared to many chronic ET sufferers, my tremor is very manageable. In fact, unless I'm doing a specific activity, nobody can even tell. And for the times when people could tell (in meetings, for example, when I had to handle and read documents), many assumed I was suffering from some kind of alcohol withdrawal or something similar. How embarrassing, right? "No, they aren't DT's. I don't drink! Really! What do you mean will I agree to a blood test??"

I had stopped taking the medication for about two years because I felt confident that the affliction wasn't affecting my life all that much (plus, I hate taking pills of any kind), but then around 2008, I began to notice pressure and mild pain in both of my shoulder joints. For lack of a better description, at times it felt as if there were air bubbles in my shoulder that would rapidly grow and then pop. At times, it felt as if my shoulders were going to pop out of joint, but it wasn't exactly painful. Just a feeling. Sometimes it felt like I had no control over my arms, if I were to undertake some action, like picking up a piece of paper or passing the crack pipe. Just little, normal things like that. So, I decided to start taking the drug again.

The good thing about Propranolol, aside from how it helps me, is that, at this low dosage, it has virtually no side effects. No liver impact, barely any fact, aside from the fact that my arms feel perfectly normal, I can't even tell that I am taking anything at all. I like that.

At any rate, my new doc has scheduled me to see a new neurologist to give me a new batter of tests to assess my tremor...but, also to see what he might say about stuttering treatment. I mentioned the new drug Paglocone to him, but he has never heard of it. No big surprise there. I think I read recently that the trials for Paglogocone were ended and aren't scheduled to start up again, so we'll see how that goes. I don't know what other meds they try for stuttering, but I would be interested to try something...just because I've never tried medications for it before. I'll keep you informed of what the neurologist says.

I hope everyone's 2011 is going well. Don't forget to turn your clocks ahead tomorrow night!