I have not noted a mention of protein in this discussion. Any protein injested less then 2 hours before taking your SInemet or less than one hour after taking it will greatly diminish its effect.
There is a Scandinavian company that has a duodenum pump that continually
dispenses minute amounts of levadopa into the duodenum. It appears to work pretty well.
My friend Nkki O'Brien, takes liquid sinemet on an hourly basis. That regime works well for her.You cannot even tell she has PD when she is on, which is just about all the time. OFF She needs a wheelchair!

Charlie

The protein problem seems to vary with the individual. Somewhere along the line I read something by Dr. Lieberman saying that only a minority (25% ?) had to worry about it. I do not remember the actual processes involved.

For myself, protein is good. I do much better if I start off with meat and eggs. A couple of possible explanations- 1) Protein provides the building blocks for production of dopamine, so having a surplus helps; 2) Meat is also a good source of potassium, so maybe I was benefiting from that. (You see why this is a mixed blessing. I have to doubt everything that I had thought figured out.); 3) Protein stabilizes blood sugar levels; 4) There may be something to the idea that your blood type relates to your dietary needs.

Regarding the advantages of slow, continuous delivery of ldopa into the system- one of the reasons I want to revisit the mucuna question is to experiment with the water bottle and mucuna mix as a delivery system. The constant spiking of ldopa in the system is not good. Mixing a set quantity into a bottle of water in the morning would allow one to minimize that.

Another factor about mucuna is that for those of us without insurance it sure is cheap. Twenty bucks will last you two to three months.

This brings up a question I have been wondering about. When I was trying mucuna powder, I assumed a certain percentage was ldopa - ten percent as I recall. The literature suggested a range of five to fifteen. Simple math gave me the equivalent to the Sinemet I was taking and the mucuna did, indeed, have a similar effect.

Why? The mucuna had no carbidopa to preserve it against degradation. Why did the simple math equivalent work? What am I missing here? Should it not have been wiped out by enzyme action long before it made it to the brain?

I have been wondering lately (as my sinemet and mirapex don't seem to be lasting as long) which is worse - having variations in the amount of dopamine available OR taking too much sinemet. ie should I increase the number of doses in a day and increase my risk of dyskinesia later but keep the dopamine more level. Or should I put up with the somewhat off periods so I don't have to take so much sinemet, but that will cause whatever problems uneven dopamine causes.

Anne, I'm waiting eagerly for the rest of your post, hoping you have some information that will help me make the most of my present meds so I don't have to change anything. Thanks for all your research.

Well put. That is my question, too....to dose or not to dose. I tend to err on the too - little side...I guess it depends on how bad the dyskinesia gets. And since adding Amantadine 2+ weeks ago, I am even more confused. Wouldn't it be nice to just prick your finger and get an instant l-dopa reading to better gauge our doses? Anne, I'm looking forward to your post, too.

Rick, I often take my mucuna as you are thinking of doing. I weigh out the powder (ahead of time), put it in a small bottle with a chip of lodosyn. When it's time to 'take' it, add a little water and shake and then sip evenly over the next hour or so...3-4 sips, maybe. Somewhere I read that l-dopa/mucuna isn't stable after mixing w/ water and I don't know for how long, so maybe the water bottle idea needs experiment - as usual...

ibby

My understanding is that the better choice is to maintain a constant level. That is the logic behind the pump systems.

The mucuna lasts about a day but needs to be kept out of sunlight. An opaque bottle does the trick. I intend to mix up a day's worth each morning and hit it on a regular basis. Trial and error.

You will find that the solution turns black as the solution degrades.

Charlie,
I’ve tried this one out and it is almost what you would call a
”Monkey sandwich” in dutch or a myth in English. If I take the protein after I’ve taken my medication I experience no trouble at all. I test this every day with icecream yoghurt meat cheese etc.
The duodopapump is widely used indeed.
Levodopa does not dissolve very well in water so you will have to shake it very well, which of course isn’t a problem for us.

Reverett,
“The constant spiking of ldopa in the system is not good.”
What would you do if you were a human body and for some reason there was a sudden increase of levodopa in your blood. Of course you would try to break it down, to metabolize it. This in turn would cause Homocysteine levels to rise and vitamin B12 and folate levels to drop.
“The mucuna had no carbidopa to preserve it against degradation.” This is what puzzles me too.

Wendy,
“which is worse - having variations in the amount of dopamine available OR taking too much sinemet”
This is really a problem for me too. I take as little medication as possible but sometimes this brings my body in a cramped state which also cannot be healthy.

Joop

Had an awful day yesterday, excuse me about the delay in this answer, here is the story to give you informations.
I am under continuous subcutaneous infusion of apomorphine, 24h round the clock treatment, a treatment to be promoted for many,with strong but very possible education on my opinion, as optimized use may lead to best motor results.
This is no surprise as, this technique is the only one with intra-jejunal duo-dopa to deliver continuous dopaminergic stimulation, though a "must" in terms of respect of functioning and regulation..

Results are great in my case -huge akinesia and narrow window before reaching level where dyskinesia are triggered, a well-known problem in IPD, early optimization may prevent, but if this I know by now and may easily demonstrate, unfortunately no one has taught me on time, I have learnt by myself and understood the mechanisms when too late for me.
Apomorphine permits me to go from 56 in "best Off UPDRS" -to 6 in '"best on",
(see below a report of the tests).

I have ordered next fills to pharmacy 12 days ago and was told they would be a few days of delay but then, a delay again...
From delay to delay, yesterday was the crucial limit, as I would have not enough fills to end today.
A call to the pharmacy yesterday morning told me the product had not arrived yet and that the pharmaceutical laboratory would no deliver anybody until friday.
To me, stop of infusion means awful suffering with most distressful impossibility to breathe.
Should I describe with all details what any of you may imagine about the stressful black day it has been then with my "mental brain" thinking clear, looking for solutions, applying them and repeating operations again and again as one after the other led to failing results and with my "emotional brain" reaching because of these repeated failures, a typical parkinsonian mess that quickly led my body to be submitted to strongest internal vibrations and dyskinesia throwing me from chair to ground for hours till finally a solution was found?
The only solution for me today is to take a taxi to go to Grenoble, a 1h30 drive, and go to the hospital where DBS-STN has been co-pioneered by neurosurgeon Pr AL Benabid and neurologist Pr P.Pollak, who follows me.
I have asked nurse and phamacist to call his unit yesterday for me and everything has been arranged, the pharmacists of the hospital have been told about my case and will provide me enough treatment for one week.

I am aware that such a solution has been found after several hours of search and with involvement of several persons because of the ability I have kept til now to develop huge motivation to reach goals, a very atypical one when , conversely most of us suffer from apathy, and that an other big part of the whole has been possible only upon my name, because of my reputation in own country for on-going contribution to french PwP's and implication in improving IPD social and sanitary problems.

But I worry about all the other persons under same treatment you can't switch in one day as many others and when Laboratory Aguettant we called yesterday only answered no more Apokinon fill was avilable, delay in production, delay in delivery and that's all of it, no more, not one word with either a regret, an excuse, nor an offer of help, the taste of compassion, the smell of empathy.
Nada, niente, rien, nothing.

So, unfortunately for this thread, as we have zero help for PwP's in France, neither state nor association giving care and help to people but only fund raising and as the only SOS Parkinson here is to call or mail Anne Frobert,(see "anne frobert parkinson" on google search...), I'll be very occupied today ....
Very very sorry about this delaying my participation, a big frustration to me as I was so happy to give you answers, to present you a good view upon optimization, explain how much the mechanisms of dopaminergic treatment effects are misunderstood by all, how it is possible to change things and turn them a better way.
But to carry on I need to stay alive, no?
So thanks for your patience for a couple of days

Joop, I send you a private mail yesterday here on Neurotalks.
I will try, before living to Grenoble, to post a small presentation I started to prepare the night before but rained unfinished yesterday.
Anne

REPORT:
"Best off" UPDRS scale test is performed after stop of all treatment for several hours ( more than 8 hours duriing my test),a dreadful experience I went through, at 56 I am like a statue made of stone, can't move one finger, breath, talk , swallow, open eye lids ....most awful situation of total dependance where own body is reduced to the most painful prison and only mental functions are perfectly clear. I observed from this very advanced point of view of "IPD seen by its inside" that I could talk to myself in french, english, spanish and german, could explain modulation of dopaminergic receptors response with short time and long time duration effects, depotentiation and significant decrease in membrane-bound NMDA receptors...all this was perfectly clear in mind but Icould ont communicate.
Such an awful experience exposes you to all the hardness of your physical degradation and and to the huge distress to feel then the most absolute lack of power to fight against.
I have made afterwards the suggestion to Pr Pollak neurologists may change the name of "best Off" to "worst Off" in respect of patients for the high level of physical and moral suffering this stop of treatment irreparably induces.
Levo-Dopa pulls me out of this hell on earth, back in half an hour with dispersible Madopar to "On" stage with "best On" with UPDRS testing at 6. I recognize honestly Dopaminergic stimulation works particularly well upon cases of my type, mostly severe akinetic form with very young onset around 21-23, though diagnosis made only 9 years ago at age of 42 -another story-
Here is all the miracle of the "famous golden standard molecule" but...
I have reported in previous thread how bandwrapping pulled me out of it too, to UPDRS scord of 12 in few seconds, the testing of it upon my "best off" stade having been initiated by Pr Pollak who performed by himself the clinical examination , calculation of results and reported the observation in my file in hospital-another story too-

Anne is rushing toward Grenoble at the moment, but asked that I post this link to a slide presentation about her Optimization work. It should run automatically.

http://www.parkemedia.org/pps/NTopt.pps

Anne, This is an amazing presentation. It is what I wanted to say. I made an article on the subject in dutch ( http://www.parkinsonhuis.nl/archief/requip2/index.htm ). It isn't half as complete as your presentation I must admit, but you can see we're on the same tune.
Joop

Ann,

I know that you're not responding here at the moment, but I hope everything works out soon for you. There's nothing like being in the off state for long periods.
Your presentation was very interesting.

John