[reverett123]

I feel a fit of self-experimentation coming on and amkeenly aware of the need for some way of measuring results that will be meaningful to the overall community and would allow us to benefit from each others trials. Could we agree on some sort of practical system of benchmarks? My initial proposals-

First thing in the morning is as close to a baseline as we get, I suppose, so:

#1: Time from awakening to taking of first medications.

and

#2: Time from ingesting first meds to first full "ON".

#3: Time from first full "ON" to first sign of "OFF"
This one would require one to intentionally allow meds to drop.

These three would allow us to spot changes rather than absolutes and partially correct for our individual stages and regimens. Anything that, say, JeanB reports as extending her times by 50% is likely to be of some benefit to me regardless of our individual situations.

Any comments or suggestions?

[tulip girl]

Reverett123,
I heard someone describe us PWP as snowflakes - we are all flakes but no one is an identical flake LOL so there are many variables ie gender, years of PD, age, actrivity before and during ON time, etc. While I think it is a neat idea, I think it will give us more information about ourselves than any one else. But I am willing to document for a 2 week period and share my findings - not raw numbers but connections and observations.

TG

[jeanb]

Originally Posted by reverett123

I feel a fit of self-experimentation coming on and amkeenly aware of the need for some way of measuring results that will be meaningful to the overall community and would allow us to benefit from each others trials. Could we agree on some sort of practical system of benchmarks? My initial proposals-

First thing in the morning is as close to a baseline as we get, I suppose, so:

#1: Time from awakening to taking of first medications.

and

#2: Time from ingesting first meds to first full "ON".

#3: Time from first full "ON" to first sign of "OFF"
This one would require one to intentionally allow meds to drop.

These three would allow us to spot changes rather than absolutes and partially correct for our individual stages and regimens. Anything that, say, JeanB reports as extending her times by 50% is likely to be of some benefit to me regardless of our individual situations.

Any comments or suggestions?

I'll be happy to keep track of that! Of course, then there are the middle of the night episodes, to keep track of as well?

And I have FINALLY given in to the requirement for me to take first meds on an empty stomach and NO FOOD AT ALL for an hour after those meds. If I don't do that, I'm pretty much a wreck for the day.

Jean

[reverett123]

The only way that those numbers will have value is as a measure of relative rather than absolute improvement. If we try hard to compare near-identical conditions in the same rat with the variable being substance "X" and we find a significant change, that flags it for a closer look.

It is not a blinded trial and is not intended to be. It plays to our strengths - namely that we can be sloppy but still act as a fast way of identifying places for "real" scientists to look. If "X" cuts my time to first on by 25%, that might inspire another rat to try the same and they might report 50%, and another 10% etc. If ten rats report improvement but they are all over the map, that's great. We did something positive instead of twiddllng our thumbs.

I'm going to try one just as a test of this approach. I have here a bottle of Melissa officiallis (lemon balm). Brand is Nature's Way and it contains 490 mg per capsule. It has a long tradition as a remedy for stress and there are even a few human trials on PubMed - all positive. Reccomended dosage is three caps per day so I'll start there. I will take the first with my first meds, the second at noon, and the third at 3:00 PM

I'll use this morning as my baseline. I slept reasonably well, got up about 5AM, came on in one hour, but began to falter after about an hour and a half (which got me to thnking about this). During that time I had a boiled egg and a rice cake with peanut butter and a cup of coffee. A typical morning for me. I will try to reproduce those conditions anytime I gather new measurements.

In theory, if I see improvement in those numbers, then it is worth trying to refine the experiment in some way.

Hey,it keeps me off the streets!

[paula_w]

not going to bug you again but this experimentation will possibly take place and then be forgotten. two people have volunteered for making a database of patient input on alternative treatments . would you consider working with them rick? this will be forgotten as soon as it's off the board as many of the things you've written about and tried.

are there any databases with alternative treatments or would we be the first? i think this one has to be a patient database. the medical community is not looking at this very much.

ok I'll not bug you . back to your regular post. you are getting more in pms so i won't bring it up on the board again.

think on it and thanks

[jeanb]

Rick, the work you have done, the data you have collected and posted is amazing! Keep up the good work.

Jean

[tulip girl]

This board needs to lighten up. It is very intimidating to post here, as a newbie, very few take the time to respond to me, I enjoy the stimulating and thought provoking topics but most of the time I feel like I am talking to myself. On another thread I asked a question about a juicer and I got a very ccomprehensive reply but that person expressed discomfort talking about an "off topic" - nutrition is very high on my list of taking care of myself as a PWP. Pontification seems to be the norm here

I double dog dare anyone to click on the thanks
I may be only a JUNIOR MEMBER having passed the vetting of my earlier posts to see if they (I) were worthy but I got my BIG girl panties on and I aim to be heard.

Tulip Girl

[jeanb]

Originally Posted by tulip girl

This board needs to lighten up. It is very intimidating to post here, as a newbie, very few take the time to respond to me, I enjoy the stimulating and thought provoking topics but most of the time I feel like I am talking to myself. On another thread I asked a question about a juicer and I got a very ccomprehensive reply but that person expressed discomfort talking about an "off topic" - nutrition is very high on my list of taking care of myself as a PWP. Pontification seems to be the norm here

I double dog dare anyone to click on the thanks
I may be only a JUNIOR MEMBER having passed the vetting of my earlier posts to see if they (I) were worthy but I got my BIG girl panties on and I aim to be heard.

Tulip Girl

Hey TG,
We're glad to have you here! Who cares that you are a "junior member"? I sure don't. I'm always glad to see new people come to the board.

You are welcome to post as you see fit! Lots of us post and get no response, so don't take it personally if it happens to you. And many of us are pretty serious about things - advocacy, how we are feeling, research, researchers, the orgs, the state of treatments in the pipeline.

Jean

[krugen68]

Originally Posted by tulip girl

I double dog dare anyone to click on the thanks
I may be only a JUNIOR MEMBER having passed the vetting of my earlier posts to see if they (I) were worthy but I got my BIG girl panties on and I aim to be heard.

Tulip Girl

er what are BIG girl panties the mind boggles

[Conductor71]

Originally Posted by krugen68

er what are BIG girl panties the mind boggles

First, I'd like to send a warm welcome to all of our new members! I have noticed several new names lately, and the more, the better. We end up enriched by new insights and information, so please do not ever be afraid to post.

To Krugen and Tulip Girl,

Too funny. Actually, thanks are due to both of you. Both of you are a breath of fresh air here. Tulip Girl, thanks for telling the forum like it is. I send people here because of the amazing amount of knowledge and for the advocacy but always add a disclaimer that it is "not a place for warm, fuzzies." I took a deep breath and started posting in July of last year and haven't stopped since, though I'm sure I've taken my foot out of my mouth on at least three occasions.

Quite honestly, I tend to under-utilize the "thanks" button because I'd rather say it with three paragraphs instead of two words. I could say that I feel slighted because I did reply to your post about prolactin and while a little tangential, I am always interested to hear how pregnancy has impacted one's PD. Yet, you only see that someone replied to your juicer question
(BTW, I have a Juice Master) Just kidding on this, but you get my point.

Anyway, don't be intimidated. I felt the same way you did for a short while, but eventually you get over that and feel more a sense of urgency to share any new info you might stumble upon. I think it does take great pluck to post here, and I am already blown away by how much you know about PD! If it weren't for the information and experiences shared here I would be a lost soul with this diagnosis. It is the only place that empowers us to remain even in the slightest sense control over this disorder.

Krugen, I was hoping you would start a brain fog post, looks like I may just have to do it.

To all our newbies, please continue to write and start new threads. We all need each other!

Laura