I was taking 1/2 teaspoon of DM cough medicine from 2006 - 2008 for neuro protective purposes

I don't know if I got any neuro protection from it or not, but it did have a positive effect on my symptoms..I started taking my first dose at bedtime, and the next morning I felt really good..My symptoms started in my right leg, and that is where my dyskenisia started in the later years..I did not have dyskenisia back in 2006 - 2008

Anyway, I was saying how great I felt the next morning after my initial dose of DM..I was able to slip my right foot intro my shoe without touching it with my hand..It had been a few years since I had been able to do that, and it at first I was skeptical..Was it the DM or was it a fluke?..Well that continued for quite a while, so there is no doubt in my mind that DM was helping to manage my symptoms

Five days ago I had been sick and tired of dyskenisia, and there was a thread around here recently about DM and dyskenisia, so I decided to give DM another try, to see if it would tone down my dyskenisia..So I took a between a half and a whole teaspoon in the morning after meds, and take the same in the late afternoon..My plan was to take the DM before my meds kicked in, in the morning, and before I went off in the evening, because that is when I get dyskenetic..

So the results of this experiment are, reduced dyskinsia, as well as shorted intervals of dyskenetic episodes..I was having serious problems with freezing..I would be getting close to my kitchen table, and I would freeze..About to pass through a doorway and freeze..Narrowing passages, and freeze..My cell phone would ring, and if it wasn't in my pocket, I would freeze in anticipation of not being able to get to it in time, and sometimes it would only be 20' away..It seemed, the more urgent the situation, the worse the freezing got..My whole body feels weak when I go off, and my legs ache when I freeze, or take half steps to try to get from destination "A" to destination "B", and when I get moving the aching goes away..The past two nights I actually felt like the DM prolonged the effects of the Stalevo, beacuse I felt like I was still somewhat on after the evening dyskenisia, when I should have been off

My drug regimen hasn't changed in a while.So if I take my meds on time, 99 out of 100 times, I get the same results, so the DM is definately doing something

The question is....How long this last?..I will post updates occasionally

Good to hear from you Steve. I restarted my own experiment from several years ago just about four weeks back. I had not intended to go public with it for awhile, but "What the hell?" as they say. We might even fan the flames under an entirely new generation of Stealth Rodents once they begin to realize that this actually works!

And works, it do! I think that we should, as a group, chew this minor miracle up and determine its limits and identify any perils that we can find. And we must figure out how to use it and then get that info out into the ParkiSphere or whatever.

We should do this with the next creative collaboration in mind and show that a neglected rat can take his fate into his own hands if pressed. The stereotype of the weak but determined PWP taking Life by the throat can be very powerful. Heck we may start a revolution or a plot or a conspiracy or something.

OK. Enough of raging at Heaven - time to get to work. I propose that we at least consider trying to mimic how the "Gluten Files" were treated as a unit that could be swiftly deployed where wanted <Note that that is my observation and not that of the "curators" of those files and so I may be talking out of the ole' megaphone here.> My point is that we can be rats of distinction simply by keeping good records.

The importance of the DXM is not to be underestimated. It not only works, it does so on multiple levels! By this I mean that it does, indeed, put the brakes on PD (as well as a host of other disorders), it also works on the symptoms that rob us of so much of our lives. It makes me stronger, especially in my lower legs. Nothing else worked as months went by. But then DXM came to town. My legs feel stronger every day. There needs to be another option in that bag of tricks that we are handed at the neuro's office along with his diagnosis. The one that I was given extolled the wonder of the new miracle drug "Requip" and featured faux - elderly sex machines playing tennis while they rested between trysts. Or at least that is the message I received.

DXM, properly investigated and reported, can add another and even more important tool to our bag. And it has a dozen different functions that we can tap into. When we are asked for our advice for initial treatment it may be that we can direct our new litter-mates to DXM. We already have RLSmith as an example of halting PD and we have Steve for an average Joe benefitting from taking charge of the drug instead .

Now to work.....
Remember - No MAO inhibitors!

Off to a somewhat sloppy start a month ago due to a nasty cold but am seemingly over that.

As I have noted before, I suspect that my metabolism may be a bit wonky and that I may be more sensitive to DXM than some I once thought that the result of low liver enzymes (CYDP 450s or so) but now amnot so sure. So I began by diluting the standard DXM (from CVS generic DXM) to a 50% syrup and 50% water solution after a little trial and error. I would suggest that anyone starting this should begin by finding the lowest dose that has any effect. Then cut that dose in half and titrate back up. The reason for this approach is that we are working with and effect that may be lost as the dose goes up. It is hard for our Western minds to grasp, but more is not necessarily better. Also, if you find your "sweet spot" for awhile but then lose it, check to see if your dose has crept up from where it used to be and crank it back down first thing.

So, from this dilute mix I take a single drop (approx one ml) each night at bedtime. A single drop doesn't seem like much. But it can be. Trust me.

I am sleeping much better. No night terrors. Leg cramps down by half. Urine output down by half.

Had a bad cold about about mid-month whic scrambled things a bit but seem to have recovered.

Rick writes:

"My point is that we can be rats of distinction simply by keeping good records."

Yes. Yes. Yes.

There's the private side of white-ratting. You take something that you have good reason to believe to be safe: it makes you feel better, so you continue to take it; it makes you feel worse, so you stop. That seems a reasonable approach to me.

But, we can get so much more benefit from the process if we communicate and share our results. This is the public side of white-ratting, it requires:
- measurement;
- statistical analysis;
- controls;
- placeboes;
- blindedness, etc

Provided we, PwP, have the will, we can do all of these.

At the very least, can I urge people (white-rats, other PwP, non-PwP) to provide some data to my online PD measurement and analysis web site PDMeasure:

http://www.parkinsonsmeasurement.org/PDMeasure

This measures your side to side tap test score and stores the results anonymously in a database. The anonymous data is open to anyone to download and analyse.

Just imagine how much more impact it would have if we could quantify the effect of our white-ratting.

John

I'd like to point out that there are twenty drops approximately in a milliliter.

http://en.wikipedia.org/wiki/Drop_%28unit%29

The accuracy of converting drops to milliliters varies with the viscosity of the liquid. Things that are mostly water fit with this approximation.

There are approx. 4.5 to 5ml in a teaspoon. depending on the teaspoon used. So using a little graduated plastic cup is best.

Target pharmacies will give you a plastic syringe with both tsp and ml on them. I used mine for my cats.

John-
I tried but the software took my survey data but showed no interest in my test attempts. Ideas?
_Rick

Rick,

It's great that you're using PDMeasure, not so great that there's been a problem. Whatever the cause it's in one way or another my fault. We'll get it working.

The good news is that you registered OK, and did Survey 1 OK.

The next step is to do Test 1, the side to side tap test. I've just done that on my account and it works fine.

This suggests the instructions were not clear or, less likely, that your process timed out before saving, or less likely still, that the server went down.

So, I'd be grateful if you tried again. You will have been automatically logged off by now, so please:
Sign In
Run Test 1
Do the tap test - you should see left and right hand scores.
Press Submit
Finally, you can see if everything has worked by pressing View Data and scrolling to the end. Your scores should be visible.

If that doesn't work, I'd suspect a portability problem. So, if things are still not working, please let me know your operating system (e.g. Windows 7) and browser (e.g. IE7).

Looking forward, you will want to extract the data for each of your projects. This is much easier to do if you tag the entries. You can do this in one of two ways. For short term trials enter your tag of choice in the Extra Information field of Test 1. For long term trials you can put a tag in the others field of the medications survey.

Just out of interest, the latest usage figures for PDMeasure are:
Survey 1: 108 (of whom 90 have IPD, 3 have other Parkinson's, 2 other illness, 13 are healthy);
Test 1: 521
Survey medications: 56

John

Is this the thread you are looking for?

Yes, it sure does work..I don't know if it would work for everyone, but it is still working for me..I took a little bit this morning, and I got dyskinetic for about two minutes, and I was on..I forgot to mention, that when my meds were going off for the evening, sweat was pouring off of me like rain..I have had a little bit of sweating, but nothing like it was before

I agree with you..If we don't think outside the box, nobody is going to do it for us...So there's two cheap things that I know that work...DMX and mucuna..It makes me laugh when big bad corporate pharma manufactures all these expensive pd drugs, that ain't worth the power to blow them to hell..Meanwhile, there are dirt cheap over the corner drugs, that work very good

What really is a riot, is that on the bottles of cough syrup it says "Do not take this drug if you have Parkinsons Disease"..Yeah...Don't take it..It might make you feel better..

I brought up DMX at a support group meeting , and I was cut off by the facilitator, and told that we aren't supposed take that stuff, if you have pd..I've about had it with support groups, the APDA, the PDF, PAN, and all the rest..After all these years of pumping millions of dollars into research, the only people who are benefiting from all of this, are the people who are employed by these organizations, the scientists who soak up the money with their research, and romance people with their smoke, but never produce any fire..And we get ****!!..And the best they could come up with is stuff like Azeilct, that they claim it is neuro protective..What a crock!!..They said the same thing about Mirapex, when it came out, and that was a big sham..A dirty marketing ploy is all it was

It is sad that something so harmless, as long as you aren't taking any MAOI medications, goes underneath the radar, or gets critisized by people who are taking pd meds, that are far worse for your body than DMX ever thought of being

Then there's mucuna...Mucuna is what is keeping me commercial fishing part-time..I mix a little more than one third of a teaspoon in some water, before I leave the house, and I'm good to go..And what I do is very hard work, but I can still do it for 3 - 4 hours per day, two or three times per week..And that's after 11 years of pd

So I ask you all.."What's in YOUR wallet?

If we do start attracting attention, one group to keep an eye on is the National Institute of Drug Abuse (NIDA). This bunch of right wingers have been so bent out of shape over the years by their inability to show serious harm from DXM that they long ago went over the edge into darkness. Some of the stuff that they claimed was laughable if it were not fueling their own propaganda. We can expect to run into them from time to time. But, enough of that for now.

I am not going to try to do a blow-by-blow approach but wil instead give "snapshot" reports. It is a start.
-Rick