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Taking action promotes hope, keeps me going
About two years after being diagnosed with Parkinson’s disease (PD), my neurologist suggested I consider enrolling in a clinical trial to determine if coenzyme Q10 could slow the rate of functional decline in patients with early-stage, untreated PD. On the one hand, I was eager to try anything that potentially could slow my disease progression, but on the other, I couldn’t shake my fear of the unknown.   How would CoQ10 affect me initially and what unexpected, adverse effects might surface five, 10, or even 15 years later? What if I were given the placebo instead of CoQ10 and missed my best opportunity to try a neuroprotective agent?   Scouring the Internet in search of answers, I was surprised and disappointed to learn that clinical trials are not intended to benefit the participants (although they often do), but to help doctors learn which treatments work best for the benefit of future patients. Understanding that the more people who participate in clinical trials, the sooner we will have a cure for PD, I felt obligated to do my part — both as thanks to those who did so for us and in hopes of sparing our children and grandchildren the pain we know.   After comparing the risks and benefits of the CoQ10 trial to those of current treatment options, I concluded that the potential upside of the study far outweighed the relatively low level of risk. The risk was low because CoQ10 is a natural nutrient present in almost all living cells in the body, making it far safer to test than a new, experimental treatment. Also, a pilot study had already shown that CoQ10 was well tolerated at doses higher than were being tested.   An added plus was that the trial design offered participants a better than average chance of receiving CoQ10 versus a placebo. We were randomly assigned to one of three groups receiving different doses of CoQ10 combined with vitamin E, or a fourth receiving a placebo containing only vitamin E. Neither the participants nor the clinical staff knew who was taking what until after the trial ended.     I went the full 16 months of the trial with no adverse effects and no need to initiate Parkinson’s medication. I believed the CoQ10 was slowing my disease progression, so I didn’t want to go off of it for a year while waiting for the trial results to be published. I conferred with my neurologist who said she didn’t see any harm in my taking 1,200 mg/day of CoQ10 independent of a trial. The biggest obstacle is cost, which runs about $200 per month. top	Classified as a dietary supplement, CoQ10 is not regulated by the Food and Drug Administration, providing no assurance that retail versions contain potentially beneficial amounts of the compound. I tracked down the company that had supplied the CoQ10 for the clinical trial and set up an account to receive monthly shipments.   Trial results published in 2002 revealed that those who received the largest dose of CoQ10 (1200 mg) experienced 44% less decline in mental and motor function, and ability to carry out activities of daily living than those in the placebo group. Those who received lower dosages of CoQ10 did not do as well, but fared better than the placebo group. I was told I had been receiving the lowest dose (300 mg) of CoQ10, but began taking the highest when the trial ended. National Institute of Neurological Disorders and Stroke (NINDS) Oct. 14, 2002 “Study Suggests Coenzyme Q10 Slows Functional Decline in Parkinson's Disease."   http://www.ninds.nih.gov/   In May, 2007, contradictory results were released from a different clinical trial on the effects of Coenzyme Q10 (CoQ10) in Parkinson's disease, prompting the National Institute of Neurological Disorders and Stroke (NINDS) to support a Phase III trial (the “QE3 Trial”)-. Parkinson Foundation of the Heartland-Co-Enzyme Q10 -- A Q&A with Brian Fiske, PhD.  http://www.parkinsonheartland.org   While the jury is still out on the benefits of high doses of CoQ10, I continue taking it. My trial experience taught me that becoming an educated consumer and partnering with my doctor to make treatment decisions are key to living well with Parkinson’s. Taking action gives me a sense of control that promotes hope and keeps me going.

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