Wednesday, April 8, 2009

The New Forum for Medical Treatments

The message board that I will be posting my Propranolol experiences on is at: http://medicaltreatments.proboards.com/

I want to encourage anyone else experimenting with medications or behavioral treatments to also post their progress regularly here for the benefit of us all..

xoxo simona

Back with a new forum! And some notes on Pagoclone

Hi... it's me again. Thanks for all the e-mails and comments during the past year.

I had trouble starting up my "diet experiment" last year because I left the country pretty abruptly. I got accepted into an academic program overseas and had to pack in 4 days... life has been kind of chaotic since.

I was living and studying/working in southeast Asia and just got back to the states last month. I have tried many times to recreate the diet I told you about (that made me temporarily fluent during the winter of 2007/2008) but I couldn't quite capture it again.

Although I try to make the best of it, life has still been a dismal challenge stuttering and not being able to speak my mind.

A few days ago, I went to a screening appointment to take part in the Pagoclone clinical trials with Teva/Indevus. I had been enthusiastic about it for weeks since learning they wanted to see me, but when I got there and was handed a big file of documents to read and sign, I decided it was not for me. I live a few hours from the research site and the risk of getting a placebo for 8 months, while staying off any other stuttering medication, just didn't make it worth it for me. Plus, the confidentiality agreement seemed to allow them to use your name in congressional hearings and other FDA board meetings that are public record. I could be mistaken... but that's how I interpreted it. I am a nobody, but I do value my privacy, so that was a clinchpin for me.

I would rather spend the next few months working out a medication plan with beta-blockers and doing what I can to alleviate my stuttering. I'm the maid of honor in a wedding this summer, and I love the bride so much--it would mean a lot to me if I could get through a heartwarming speech for her without stuttering too much (or crying) and if some other medication can help in a small way, I'm all for it.

The idea of beta-blockers for stuttering is not new. Many people have done it with great success. Just read the "hope document" by rick carney, and search "propranolol" in the stutteringforum. I know my stuttering is a symptom of my brain, and misfirings that affect fine motor coordination. I've met many stutterers over the years. We all have tightness in our bodies and stomachs (even when we don't have to speak), interrupted sleep, and are generally anxious about everyday things and have trouble concentrating. Even though we seem to accomplish great things in life.

So, knowing that there is a chemical/hormonal component to stuttering, I've been wanting to try Propranolol for a long time. I just haven't been able to since I've been abroad and haven't quite trusted pharmacies in the countries that I was living in.

Next week, I am starting 20mg per day (10mg in the morning, 10mg at night) of Propranolol (generic Inderal)... around Apr. 14th or 15th. We'll see how that goes.

I'm still going to be blogging about nutrition and stuttering because I think that's definitely an important factor here. It's not a good idea to go on medication and not exercise or eat right.

Today I started taking only 5-HTP, 2 50mg pills in the morning, 2 at night. The serotonin really buzzed my brain! I didn't get much of a chance to test it out on people with my speaking but I'll write more about that tomorrow.

XOXO
SIMONA

Tuesday, February 19, 2008

A Breakthrough with Something Else - Want to Volunteer?

Hello Everyone!

Thank you to the people who have e-mailed me about this nutrition project... and I'm sorry for stopping the 30-day nutritional experiment short without an explanation. However, please read on for some good news...

WHY I STOPPED THE SUPPLEMENTS

About 10 days after starting in December, my body started feeling really crappy taking all of the vitamins. The probiotic pills always gave me side pain shortly after taking them, the combination of vitamins continued to make me nauseas, and I had trouble sleeping because of a bloated feeling in my stomach every night. I'm not sure which vitamins were affecting me but I stopped them all, cold turkey, around Christmas. I also read somewhere that synthetic vitamins and nutrients are not absorbed by the body very well and can cause nothing more than irritation.

MY SHORT BREAKTHROUGH

BUT, while visiting my parents over the holidays, I had a breakthrough. And I think it was diet-related...

At the end of 2 weeks staying at my parents' house, they saw that I was trying to eat healthy so they told me to try their new (very specific) eating & exercise routine. They just started this new healthy living last year and they are completely different people--high energy, sleeping better at night. So, I agreed. It was similar to the "healthy eating" I was doing on my 30-day experiment, but there were a few noticeable differences.

So, begrudgingly, after the 2nd day of eating exactly what they ate and exercising twice a day (that was hard), I very suddenly noticed that the contact between my lips, tongue, and palate while speaking were lighter and that I no longer struggled silently with certain agonizing consonants (b, d, k, f, r, etc.). I now got all sounds on the first try with soft contact.

The first time I noticed the improved fluency was about 2 hours after eating dinner. My parents and I were sitting with my sisters, talking and having tea, and I noticed myself feeling free to say a lot of words I have purposefully avoided before. Like starting sentences with "Don't" or "Do You". My mouth seemed totally relaxed and it had such a light, airy touch. No faulty timing, coordination-induced muscle locks, or blasts of air. Just relaxed, effortless contacts and transitions... it felt very weird, like I was drunk, but I wasn't.

So, I tried NOT to scream & jump for joy right then and there. I'm not sure if my family noticed, since I often speak easier when I've had a few drinks or when I'm whispering or talking in a sing-song voice. Plus, we don't really talk about my stuttering... it's very uncomfortable for us.

But, anyway, it didn't make sense--I had stopped taking all of my supplements! I went to my former bedroom (now a guest room in my parent's house) and read softly aloud from of a book, just to make sure I was actually more fluent--and it seemed that I was. I called my significant other, in New York, on the phone and I rambled on for 30 minutes telling him about my day, which I almost never do.

FLUENCY GOES AWAY

But, unfortunately, the next day we went on a trip to another city to visit my extended family--and my newfound fluency kind of drained away within the first day. My parents and I weren't eating our usual dinner. By the 2nd or 3rd day I was back to normal, stuttering speech. So I initially thought it was my vitamins that was responsible for the fluent spell, so I frantically started popping all of my supplements and probiotics again every day... but to no avail.

Then, when I got home to New York, I was pretty devastated and spent the bulk of my time thereafter trying to figure out where I went wrong or--maybe--where I went RIGHT...

I read something in the New York Times about probiotics increasing pancreatic sensitivity and infections in some people (which explains my side pain)... so I stopped all the supplements except my daily multi-vitamin, which still makes me a bit nauseas for about 30 minutes after taking it.

FIGURING IT OUT

I've been thinking a lot about what my parents might have been EATING or DOING that changed my brain function, and I think I may have figured it out. I've been doing testing on my own for about 2 days now and I will post the results here if it works.

For those who keep asking me, YES, I STILL BELIEVE that our "stuttering brains" are missing some type of nutrient that could greatly improve our fine motor function. Maybe not 100% correct it, but greatly improve the neurotransmitter connections.

I also believe that most of the other therapeutic theories out there (including valsalva) address the symptoms of stuttering (not the root cause); the symptoms of how our bodies react when our timing & coordination get thrown off. For example, our breathing becomes irregular and explosive as we try to break through the faulty timing & coordination of our fine motor skills. But that erratic breathing is not the cause of why our timing & coordination is off. I think it's what happens when you keep missing the coordinated contact on a sound.

WANT TO VOLUNTEER & TELL ME YOUR RESULTS?

I AM LOOKING FOR 100-200 VOLUNTEERS who are willing to eat a specific dinner for about 7 days to see if they see a difference, and also to complete a pre & post-survey. I know it sounds crazy, but what have we got to lose? You can use an alias instead of your real name.

If interested, please e-mail me with your gender, age, and number of years you have had persistent developmental stuttering. You can start NOW.

There is no money involved in any way, sorry. I'm just trying to get reports from other people if this works for them.

In the meantime, I will post back here in a couple days and let you all know if I'm more fluent again!

THANKS FOR READING!!

XOXO
Simona

-

Thursday, December 6, 2007

30-Day Experiment: Day 10

Daily Digestive-Supplement-Activity Record

Date: Wednesday, 12-5-08

Vitamins & Minerals:

Multi-vitamin: check!
Probiotic: check!
Calcium: check!
Magnesium: check!
Co-Enzyme Q-10: check!
Selenium: check!
B-Complex: check!
Omega-3 (twice): check!
Vitamin C: check!
L-Carnitine: check!
GABA (twice): check!
Potassium: check!

Food Journal:

Morning:
raspberry/strawberry/banana smoothie
hot oatmeal w/ water
sliced apply
mug of green tea

Lunch:
no lunch!
snacked on pretzels, lemonade, bbq chips


Dinner:
white rice
seaweed salad
teriyaki salmon
bok choy (steamed)
watered-down raspberry juice
green tea

Exercise:
What: walk/jog
When: 9:30 pm
How Long: 20-25 mins

Total Hours Sleep Last Night: 9 hours

How I Felt Today:

Was kind of busy running around, but felt good. I'm thinking of switching the probiotic I'm on to something better. The one I'm using now is only acidophilus, but I read that it may help to take something with many different types of live bacteria. I've also been taking it during meals, but they say your stomach acid is at its lowest levels one hour after a meal, so I think I'll start taking the probiotic after dinner instead.

30-minutes Reading/Speech Comments:

Self-Rated Fluency: 5

My self-rated fluency is on a scale of 1-10 (10 being fluent, 5 being my normal disfluency, 1 being my worst disfluency).


I'll be back tomorrow! Thanks for reading...

Tuesday, December 4, 2007

30-Day Experiment: Day 9

Daily Digestive-Supplement-Activity Record

Date: Tuesday, 12-4-08

Vitamins & Minerals:

Multi-vitamin: check!
Probiotic: check!
Calcium: check!
Magnesium: check!
Co-Enzyme Q-10: check!
Selenium: check!
B-Complex: check!
Omega-3 (twice): check!
Vitamin C: check!
L-Carnitine: check!
GABA (twice): check!
Potassium: check!

*I notice it kinda helps to take my vits towards the end of breakfast (except the calc/magnesium which I take at night). If I take the pills just after a couple of breakfast bites, I get a mild stomach ache for about an hour. Not 100% sure if it's the vitamins though.*

Food Journal:

Morning:
oatmeal
raspberries (frozen)
orange sliced
green tea
banana
water

Lunch:
brown rice w/ spices
vegetarian tacos
salsa
chips


Dinner:
brown rice
salmon steak w/ grilled onions
carrots & green beans
green salad
2 glasses of watered down orange juice
green tea

Exercise:
What: short jog to the park and back
When: 5:30 pm
How Long: 15-20 mins

Total Hours Sleep Last Night: 8-9 hours

How I Felt Today:

Normal.

30-minutes Reading/Speech Comments:

Self-Rated Fluency: 4

My self-rated fluency is on a scale of 1-10 (10 being fluent, 5 being my normal disfluency, 1 being my worst disfluency).

Well, it's been over a week with no real change to my speech yet. My body is happier on this new lifestyle though. I feel much stronger emotionally, not taking things as seriously. I feel more physically capable in general. But, I think that just comes with valuing what you put into (and do with) your body.

I'm still waiting for my reading to "feel" better. Tonight I felt like it actually downgraded a little. Maybe I was trying too hard to make normal transition and starter sounds, I was forcing too much I think. I also had to do a lot of "required" talking on the phone today, and stumbled through a lot of it and avoided certain words, which always confuses people and makes them think you're a little scatterbrained... when in my mind my thoughts are totally focused and clear. Frustrating. I think stuttering is like being mentally cut-off from the world in a way. You can hear and think and feel, but you can't speak your mind.

I don't know about you guys, but as soon as Indevus announces who their "outsourcing partner" is, I'm going to be sending them letters thanking and encouraging them to swiftly bring pagoclone to the market. While we sit at our desks, sharpen our pencils, and continuously deconstruct the neuroscience behind stuttering with studies and resonance imaging, looking for answers... I welcome anything that brings us temporary, immediate, albeit partial, 'freedom of speech.'

I'll be back tomorrow! Thanks for reading...

30-Day Experiment: Day 8

Daily Digestive-Supplement-Activity Record

Date: Monday, 12-3-08

Vitamins & Minerals:

Multi-vitamin: check!
Probiotic: check!
Calcium: check!
Magnesium: check!
Co-Enzyme Q-10: check!
Selenium: check!
B-Complex: check!
Omega-3 (twice): check!
Vitamin C: check!
L-Carnitine: check!
GABA (twice): check!
Potassium: check!

Food Journal:

Morning:
ham, cheese, egg breakfast sandwich
1/2 decaf coffee (i know it has traces of caffeine, but i was on the run)

Lunch:
penne pasta salad & green salad
2 pieces garlic bread
mango ceylon tea


Dinner:
2 tacos (vegetarian meat, regular corn tortilla, sour cream, salsa, lettuce, tomato)
1 apple (sliced)
1 tangerine
green tea

Exercise:
What: mostly fast walking, some jogging
When: 8:30 pm
How Long: 35 mins

Total Hours Sleep Last Night: 9 hours

How I Felt Today:

I used to complain all the time about "brain fog" but I haven't even thought about it in a long time. I just remembered today that it used to be a problem for me. I think I attribute most of the decrease of that to the exercise though, I really think I'm just getting better circulation these days.

30-minutes Reading/Speech Comments:

Self-Rated Fluency: 5-6

My self-rated fluency is on a scale of 1-10 (10 being fluent, 5 being my normal disfluency, 1 being my worst disfluency).

Reading is normal today. Still blocking on certain transitions. I'm trying to focus more on the content instead of how I am saying something, and I went lighter on hard consonants, although that just sounds like a differen kind of speech impediment I guess. :) I learned easy onset airflow technique years ago, and I could have sworn Ann Druyan (the late Carl Sagan's surviving wife) used it when she gave a scientific lecture at my school back in '95. Very breathy... like you're on a ventilator and have to come up for air every few seconds.

I'll be back tomorrow! Thanks for reading...

Monday, December 3, 2007

30-Day Experiment: Day 7

Daily Digestive-Supplement-Activity Record

Date: Sunday, 12-2-08

Vitamins & Minerals:

Multi-vitamin: check!
Probiotic: check!
Calcium: check!
Magnesium: check!
Co-Enzyme Q-10: check!
Selenium: check!
B-Complex: check!
Omega-3 (twice): check!
Vitamin C: check!
L-Carnitine: check!
GABA (twice): check!
Potassium: check!

Food Journal:

Morning:
english breakfast tea w/ lemon (slept in)

Lunch:
garlic chicken sandwich on ciabatta bread
small olive plate
lime water
green salad w/ tomatoes


Dinner:
4 boiled egg whites with one yolk
brown rice
seaweed seasoning
strawberry-banana smoothie
green tea

Exercise:
What: none
When:
How Long:

Total Hours Sleep Last Night: 7 hours

How I Felt Today:

Felt relaxed in the morning, I think the vitamins and new foods are making a small difference in my body chemistry. I feel less vulnerable on some level. Maybe this is symptomatic of any regimen. But I do feel less acid-y in my stomach. Less nervousness. I'm definitely eating better now that I write it down after each meal... knowing that I have to face myself is incentive to make better choices in the moment.

I ate lunch at a restaurant today and I didn't feel the need to order a big, heavy pasta like I normally do. Small victories.

30-minutes Reading/Speech Comments:

Self-Rated Fluency: 6, normalish

My self-rated fluency on a scale of 1-10 (10 being fluent, 5 being my normal disfluency, 1 being my worst disfluency).

I had to talk a lot today to acquaintences and family, and though I did well, it nothing special. I have to really force myself use those difficult words these days, to see if I feel a difference, because I'm very accustomed to word substitution and I have my word favorites for all situations.

I'll be back tomorrow! Thanks for reading...