<Heresy Alert!>....is not the only way to gather knowledge nor is it always the best way. And it is particularly in question in the case of a patient with a progressive disease. (I'm not sure how I got started on this but I think it was ol cs reminding me of the whole "no neuroprotection" fiasco.)

So maybe this is a bit off topic, but actually the dex situation is a good one to bring it up. Suppose standard procedure rules and dex has to pass through the whole FDA process. First, no one has much financial incentive to fund research, so even if it was a blippin cure it might never see the light of day. And if some foundation eventually decided to fund it, they would start with a rat. Then they'd need more funding for a primate study. Then more for a Phase 1, etc, etc.

So here is an ancient drug that we've been giving to babies for forty years with good reason to suspect great things about it for PWP. Dosage safety has been stress-tested on the streets at ridiculously high levels with positive results. It's dirt cheap. And still figure on twenty years minimum before you can legally use it for PD.

There's an idea being floated around by one of the advocacy groups that I really like. Compile a database of things with a reasonable expectation of benefit and safety. Then work with patient volunteers who, with the supervision of their own doctors, gingerly test them. Compile the data and let each of us make our own decisions.

Now, that's science. OK, a bit down and dirty, but effective.
End of rant and back to topic. My apologies.

The two very distict things that I noticed was that I slept sounder and was energetic in the morning..I am still enegetic in the morning, but the quality of my sleep has reverted back to "normal"..actually I am energetic throughout most of the day, except I still have to take a mid-day nap..Ive noticed that even when I start to experience the mid-day fatigue, I still seem to maintain most of the newfound movement ability..I feel motivated, as I was having alot of trouble getting motivated to leave the house..to get dressed, to get undressed all semed like a hassle..It was getting easy to talk myself into staying home, but then..to do what?..My condition was making me uncomfortable..I go to a few AA meetings a week, and it is something that I always look foward to doing..but when I think about navigating through the crowd, just sitting there any feeling physically uncomfortable..the hassle it is just to go over to the coffee pot and get a cup of coffee, without spilling it on the way back to my seat..the feeling of holding everybody else up because Im so slow..cant seem to walk by people without bumping into them..its cold out..I think about that stuff and its enough to make me want to stay home, and thats exactly what Ive done sometimes..It felt like my whole body was parkied up all the time..I dont have that mental battle going on now because I feel more confident in my movements..Im not uncomfortable anymore

Pd was beginning to effect my left side as well..I noticed that I began knocking objects over with my left hand as well..I began to have difficulty picking up mail, a piece of paper etc from the table with my left hand..my balance was beginning to deteriorate..I began having near falls, where I had just enough balance ability to right myself before taking a fall..I began having difficulty putting my belt through the loops with both hands, whereas it was only with my right hand before..putting my pants on, my right foot usually get stuck in the pant leg because the ankle wont bend to slip it in..Putting my hands behind my back to take my coat off was a challenge..streeeeeeeeeccch!..getting in my truck was getting more difficult because I have to put my bad side in first..lifting my right leg high enough to clear the rocker panel was difficult, and would usually end up having my butt half on the seat when I got in, and then shimmy across the seat..Putting the key in the ignition was a chore..sometimes I had to literally put the key in the right position with my left hand, because if it was cocked I couldnt straighten it out with my right hand..then when I got the key in the ignition it was a strain to turn it all the way to engage the starter..my hand only wanted to turn the key 3/4 of the way..Putting the truck from park to drive, another hassle..and vice versa..drive to park was even worse..my gait was getting worse

None of these tasks are a problem anymore..the left side of my body is hardly symptomatic at all now..Im more confident walking, driving, doing daily chores..I feel motivated..energetic..my whole emotional balance has taken a turn for the better..What Ive noticed that is remarkable is that I can put my truck key in the ignition in the dark first shot 8 out of 10 times..I had trouble doing it in the daylight first shot if I was looking right at it..my typing ability has improved..Ive tried the toe tapping and doorknob turning drills that my neuro tests during his examination, and I can do them with more coordination..the doorknob turning was the hardest..no trouble with my left hand but my right hand would just sit there and tremble with hardly any movement whatsoever..now I can do it with my right hand but not with as much speed as my left..As I sit here today, I still havent completely gotten over this stomach bug, but still have alot of movement nonetheless

And anyone else trying either drug, a question-

Have you noticed any change in the way stress affects you?

Thanks. -Rick

So far I havent experienced any stressful situations other than that nasty stomach bug I had yesterday and part of today..I dont think anything would have helped that..I can tell you though that I feel a general feeling of relief..I am the secretary of a large AA group and I have to stand at a podium for about the first 10 minutes of the meeting, and I read from a script because I fear that I will start stuttering and wont be able to stop..I was more comfortable doing it last Wednesday..Thats about it for right now

Everstt

Are you thinkilng the setative effect contains the stress they seem to indicate is relaxed a bit.

Thanks Thelma

Steve:

Excuse my ignorance but I have been out-of-pocket for a while. What is it that you are doing to have such a great improvement in symptoms???? Are you taking the DM that the folks have been discussing? If so, how much are you taking each day. Congratulations on your good feeling these days.

Caya

Thelma-

Stress is a major player (perhaps THE major player) in PD deriving from our imbalanced neuroendocrine system and our screwed up cortisol levels. They are typically high for PWP. More importantly, where a normal production cycle peaks in the morning to help us wake up and drops as much as 90% over the course of the day, PWP have a steady rate of production without the morning peak. Bottom line is we have chronically elevated levels.

And that isn't good. One of the obvious things is that hypercortisolism sets us up for systemic inflammation which, among other things, opens the BBB and lets in toxins such as the bacterial LPS i have mentioned earlier. The reaction of the microglia then leads to the destruction of the substantia nigra and so on.

We have never received a good answer from our docs as to just why we are so sensitive to stress. Shake at the drop of a hat. Why? The answer lies here and it may be a clue as to part of the action of the dextromethorphan. As RLSmi pointed out, femtomolar concentrations are pretty darned tiny. Not what one would expect as effective sedation for something as "weak" as DM. Something more is at work and this may be close to it.

Notice that Steve felt calm, not groggy or sedated or similar feelings. And he woke up feeling good, not hung over or anything.

Getting more interesting by the day. -Rick

A half teaspoon of CVS brand maximum strength tussin cough syrup (15 mg per teaspoon) dextromethorphan every night before bed

What Ive been wondering is this..DM is a dopamine reuptake inhibitor..I wonder if it causes the Sinamet to work more efficiently

But what really got my interest was the "warning" about resensitizing of the receptor system. One way to skin the PD cat is to flood the system with dopamine figuring some will get through. That's more or less the sinemet approach.

The other is to optimize the receptor sensitivity and make a little dopamine go farther, which may be what is happening in part.

-Rick