Rainbow,
Your mother should be proud of the help that you're giving her.
When I replied to your earlier post I was hoping that the problems were the result of a simple case of under-medication. But, the fact that you report that she has peak dose dyskinesia makes that less likely. Given this, I would recommend that she should see a neurologist. But, in the meantime there's a few things that you could do.
If I understand your reply correctly, her drug regimen is: 6 times per day of 100mg Sinemet CR plus 25mg Sinemet. There is less bioavailability in the CR pill, you only get about 70-75% of that achieved by the immediate release pill. Taking this into account the levodopa equivalent daily dose is 6 x (75 + 25) = 600mg. (I note that on some doses she is taking an unspecified small amount of macuna instead of the normal Sinemet. This makes compliance harder to achieve.) Unless your mother is a small women this total dose would normally not be considered large, and the obvious step would be to increase the dose. But, in her case this is not directly possible because of the dyskinesia.
The problem that needs to be solved is how to keep levodopa levels above the threshold required to keep her "on", but not so high as to lead to dyskinesia.
The Duodopa pump achieves this by continuously dosing and by being surgically placed near the area of absorption below the stomach, thus getting rid of the uncertainty of the timing of gastric emptying. This gives a smoother level of levodopa which, in turn, allows an increase in dose without causing dyskinesia.
The art of dosing requires that you try to approximate what the Pump does by using normal drugs at the right time and dose. Given the varying times that it takes the levodopa to get into the brain, this is like trying to steer a car where turning the steering wheel doesn't immediately lead to a change of direction and, sometimes has no effect. (Or a more realistic metaphor is that it's like steering a narrow boat on the English canals on a windy day!)
The general strategy that I would adopt is:
- "measure" her Parkinson's as a baseline;
- change one thing at a time, and measure the effectiveness;
- if better, keep the change, if worse, discard and go back to the previous state;
- starting with the first dose of the day, get this right, then go on to the next dose, and so on.
Is the first dose working, in the sense that "on" is achieved, and there's no dyskinesia? If it is, go on to the second dose. If not, try is to see whether you can improve things by taking the dose with water, but at least 1 hour before breakfast. If this doesn't work, and there is:
- dyskinesia, drop the quarter IR Sinemet.
- bradykinesia, increase the IR Sinemet.
- slowness to reach "on", change for the first dose of the day only, one CR for one IR Sinemet.
You mention that your husband is good with math. Get him to do this. If you imagine a graph of dopamine levels during the day, there will be highs sometime after you take a dose, thereafter levels will decline, reaching a low just after the next dose is taken. Unfortunately, you don't have access to blood samples, so you need to construct it from observations. Now, on this graph draw two horizontal lines, one at the level where she goes "on" and the other where dyskinesia starts. Mark in the graph the times of the doses, meals and "on", "off" and dyskinesia times.
You might find this program helpful:
http://www.parkinsonsmeasurement.org...eToSideTap.htm
As a general rule, it's worth looking at exercise and socialization as well, especially if you notice signs of depression. Constipation is both a symptom of PD and a cause of reducing the effectiveness of drugs.
John