Better treatments can only come
from greater participation in clinical trials

After being diagnosed with Parkinson's, I immediately set out to learn everything I could about this disease. The words "progressive" and "incurable" appeared in everything I read, but I kept telling myself there must be something I could do to change the outcome.

During my Internet research, I stumbled across “clinical trials” and found a listing of PD trials being conducted in my community. I focused on one thought to have the potential to be neuroprotective. It had shown promising results in tests on primates, and was deemed safe in initial human trials.

I made an appointment with my neurologist and showed him the trial information I had printed out. He hadn't heard of the trial, but said I qualified and asked me to let him know if I signed up. Why hadn’t he known anything about a clinical trial with such great promise to slow or stop the progression of PD?

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I participated in the trial for two years, before it was abruptly halted. People given the actual drug deteriorated slightly faster than those given a placebo! I learned I had been on the lowest dose of the drug. These disappointing results underscore the message that there is no guarantee when you join a clinical trial. Even though the drug had shown great promise in earlier phases of testing – it failed.

 Regardless, I am philosophical about my participation. If the drug had worked, I’d have been taking it for years before it ever made it to market – years during which the progression of this horrible disease would have been slowed, or even stopped. As it turned out, I am glad I had been taking the lowest dose. The experience won't keep me from joining future trials. I’ll do the same extensive research and take my chances.

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