[pegleg]

People with Parkinson's are a moody lot! This may sound as if I am overstating a statement about my mood(s), but this is factual and has been consistent for my 18 years of living with PD.


My mood vascillates worse than Edgar Allen Poe's pendulum. Seriously, one minute I can be so up (almost manic) and the next nearly suicidal! I even scare myself sometimes.

Yesterday is an example. As many of you know, I have been wheelchair-bound for nearly 3 months, and am now in a rigid, cumbersome "boot" until after the holidays. Then to add stress to stress, my husband had a total knee replacement (and yikes! He's coming home this afternoon!)
I have held up pretty well under all of this, until ran into a church friend at the hospital. I regularly attend church, but have to miss many weeks due to the foot surgery. That's when I lost it. I wrapped myself around my frieend's neck and cried like a baby - and I have no idea why.

Researchers have identified that many who suffer with depression (before diagnosis) tend to be more susceptible to Parkinson's. Then add to your already imbalanced brain chemicals, MORE chemicals (dopamine, MAO-Inhibitors, Seritonin - SSRI's, etc), and your fluctuations with "on" and "off" times and exacerbation of PD symptoms can escalate.

I started thinking about this and how that may have a major impact on research results. For those of you who are proficient in analysis of statistical data, can this "mood" fluctuation be factored out in clinical trials? Or do we need to give this more attention?

Finally, this is probably a fluke, but just for fun you can download a "mood ring" (popular in my era) that goes right onto your toolbar. Laptops work best because you usually touch the keypad, but touching your mouse also "works.". Find out your mood right now and CAN SOMEBODY GIVE AN ANSWER TO THE QUESTION ABOVE ABOUT THE IMPACT OF DEPRESSION ON RESULTS IN CLINICAL TRIALS?

Download for mood ring:
http://www.ajcockrell.com/ajcockrell/moodring.htm

thx
peg

[Perryc]

Originally Posted by pegleg

People with Parkinson's are a moody lot! This may sound as if I am overstating a statement about my mood(s), but this is factual and has been consistent for my 18 years of living with PD.


My mood vascillates worse than Edgar Allen Poe's pendulum. Seriously, one minute I can be so up (almost manic) and the next nearly suicidal! I even scare myself sometimes.

Yesterday is an example. As many of you know, I have been wheelchair-bound for nearly 3 months, and am now in a rigid, cumbersome "boot" until after the holidays. Then to add stress to stress, my husband had a total knee replacement (and yikes! He's coming home this afternoon!)
I have held up pretty well under all of this, until ran into a church friend at the hospital. I regularly attend church, but have to miss many weeks due to the foot surgery. That's when I lost it. I wrapped myself around my frieend's neck and cried like a baby - and I have no idea why.

Researchers have identified that many who suffer with depression (before diagnosis) tend to be more susceptible to Parkinson's. Then add to your already imbalanced brain chemicals, MORE chemicals (dopamine, MAO-Inhibitors, Seritonin - SSRI's, etc), and your fluctuations with "on" and "off" times and exacerbation of PD symptoms can escalate.

I started thinking about this and how that may have a major impact on research results. For those of you who are proficient in analysis of statistical data, can this "mood" fluctuation be factored out in clinical trials? Or do we need to give this more attention?

Finally, this is probably a fluke, but just for fun you can download a "mood ring" (popular in my era) that goes right onto your toolbar. Laptops work best because you usually touch the keypad, but touching your mouse also "works.". Find out your mood right now and CAN SOMEBODY GIVE AN ANSWER TO THE QUESTION ABOVE ABOUT THE IMPACT OF DEPRESSION ON RESULTS IN CLINICAL TRIALS?

Download for mood ring:
http://www.ajcockrell.com/ajcockrell/moodring.htm

thx
peg

Good question Peg, I know from work I did on the NIMH Strategic Plan for Mood Disorders that depression affects all serious chronic diseases negatively, and that depression is one of those CNS conditions where the subjective "human" elements that are real but hard to measure. Following the Hysenberg uncertainty principal from nuclear physics on locating electrons in atom, when you measure it you change it. Hence depression like PD and pain management is difficult to study using traditional scientific methods (placebo controlled trials and linear statistical models). More than half of depression clical trials fail which is possibly related to very strong placebo responses (based on expectation of benefits in the social context of the intervention). This tangle of human elements apparently can strong enough to violate the assumptions and logic of the scientific method. If we only behaved more like lab rats we would have long ago solved PD.

In the case of CNS conditions PD also falls between the cracks of professional boundaries. In the NIMH Mood Disorders meeting attended by leading neurologists and leading psychiatrists, I observed that when ever science uncovers objective biologic evidence for a problem, the categorization switcHes from psychiatry to neurology. It appears that there is self-selection going on among medical scientists. Neurologists are uncomfortable with the subjective dynamics and psychological elements of disease, and psychiatrists are only comfortable with these subtle human responses.

The answer to this problem is not to try to get experimental patients to fit the scientific model, but rather change the model to a more dynamic systems model, and work more closely with research participants to define and "measure" the more subtle nuances of symptoms. Empower the patients with information on self help and reinforce helpful behavior.

Perry

[paula_w]

I had to read that level a few times but see that you are adding another biased angle. I had the word crazy on my list at one neuro appt. It didn't go very far as i remember.

Thanks for the post - depression almost got me. As Charlie says, 'you're the last to know." BLess him.


paula

[stevem53]

I havent been taking pd as gracefully as I was a year ago..When Im having a tough day, it ****** me off now..Sometimes the simplest things are not so simple anymore..Thank God everyday isnt like that...yet

[pegleg]

I was beginning to think no one agreed with my "theory." Perry, your thoughts are especially relevant. I like the observance that the trial protocol needs to change rather than the trial participant. When I was principal, that was my mantra: "We don't ned to change the child to fit into school; we need the school to ochange to fit the child." And that same principle applies here

Now, how do we get this concept to be accepted by researchers? In the name of science, we need to make a lot of fuss about Parkinson's gold standard of treatment being over 40 years old!

Peg