As I may have mentioned, I am involved in a 6.5 year study to determine if caffeine can slow the progress of PD. The two people ("medicos") conducting the research are good, knowledgeable people and I trust their thoughts and opinions, but there is a nagging doubt about whether or not all the variables that ought to be present are present. I intend to make it part of the conversation when next we meet.
The first variable I will bring up is a cousin of "white coat syndrome", usually associated with a surge in blood pressure as the result of visiting the doctor and having a sort of stage fright or even a fear of doctors. I experienced this the first time the medicos tested me. The examination was extremely thorough and physically, I think I know exactly how I am progressing against the average rate of deterioration. The medicos are looking for the symptoms of PD, including, inter alia, muscle stiffness, tremor, weakness, PD mask, sexual problems, sleep deprivation, depression and signs of dementia. To determine if dementia is, or is becoming, a problem , they utilize the Mini-mental State Examination (you can find it online) which includes questions to determine cognitive ability. The first time I took it, I had an audience of just one of the medicos and I scored 24.
The maximum MMSE score is 30 points. A score of 20 to 24 indicates mild dementia, 13 to 20 shows moderate dementia, and less than 12 - severe dementia. Was I, with my score of 24, mildly impaired? Not a chance. The problem was stage fright. The test was sprung on me suddenly and my fear of looking stupid caused me to look stupid.
Could the test have been accurate and at the very least I was declining mentally? Probably not. If I were becoming cognitively impaired, the score on my second MMSE, 6 months later, would have declined along with my mind. For example, the scores of people with Alzheimer's decline 2-4 points annually but, on my second test, my score was significantly higher. I no longer had stage fright and my score was 28. It bugs me that I don't know where I lost those 2 points but the conclusion is evident, the MMSE is affected by white coat syndrome. Stage fright during the first test had negatively affected my score, while the lack of stage fright during the second test had positively affected my results. Have the medicos dealt with the stage fright variable?
Secondly, I wonder if the medicos have taken into account that I am a exercise fanatic. Exercise is known to slow down the rate at which PD progresses. It is the one thing I have experienced in the 5 years post diagnosis. Prior to taking my melange of miracle drugs, my right hand tremored most of the time. I would start out on a one hour walk with my right hand flopping around and 15 minutes into the walk, the tremor disappeared and kept itself under control for a few hours after. If I am in the non-placebo group and the rate of my deterioration has been positively affected, can they attribute it to the caffeine or the fact that I am an exercise addict? Just one more variable to think about.
The natural design of the universe is total chaos. We can force chaos into a linear system but, given time, that linear system will devolve into chaos. As a result, there are just too many variables to accurately predict outcomes but the more variables we can define, the more we can rely on a researcher's conclusions. I hope the medicos have taken at least these two variables into account. We all want to know their results are accurate. Does Caffeine positively affect PD's attack on our brains?
But, since PD is part of the universal chaos, defining all variables in its chaotic state, is in itself chaotic. One person's variables can be another person's constants. If we cannot always totally solve a problem because we are unable to define all of its variables, perhaps the best we can do is to just to avoid variables that do not affect it, making the opening paragraph not so trite as I thought.
In the words of one William Shakespeare:
“The circumstances of the world are so variable that an irrevocable purpose or opinion is almost synonymous with a foolish one".
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