A clinical trial literally saved my life! It’s hard to imagine but it’s true. My Parkinson’s had progressedto a point to where I couldn’t tie my shoes or button a shirt much less attempt to shave or risk a toothbrush in the eye. My quality of life had deteriorated to a point that medication, and I tried it all, no longer allowed me to function. I went into a deep depression and hid myself from public view. I was a stumbling and shaking shell of a man. Having exhausted the resources of my local neurologist, he referred me to a movement disorder clinic that specialized in a fairly new (FDA approved 2003) type of medical procedure, deep brain stimulation surgery (DBS).
This really was brain surgery!
Basically, the procedure involves surgically drilling into the skull and implanting wires powered by small battery packs implanted in your chest, like a pacemaker for the brain. As it was explained to me, although FDA approved, there were aspects of DBS that the medical community still had questions about and was asked if I would volunteer to participate in a little experiment, a DBS clinical trial. Normally through the use of high-resolution brain scanning (MRI), my medical team planned and plotted where in my brain they were going to target the wires. My participation in the study was to intentionally leave me in the dark about where the position of my brain they were targeting. The question I believe they were attempting to answer is: Does one position have any benefit over another. I wasn’t told what part of my brain was being stimulated with low amounts of electricity but it worked. About six months later, the results were published and it was revealed to me that my target had been in the subthalamus nucleus which I understand is a tiny, dime-size cluster of nerve cells in the substantia-nigra area of the brain. Thank goodness for technology to be able to push a wire into such a tiny space. My surgery was a success and I understand based on this trial, that there was no significant difference in the location of the stimulation. Although I am grateful to the skill and professionalism demonstrated by my medical team, I feel a sense of honor to have been one of 45 participants in a scientific experiment that answered medical questions of how the brain works and interacts with PD.
My attitude on clinical trials
This was my first clinical trial and I wasn’t scared, because of the confidence of my medical team exuded. They answered all my questions and found some answers to their own because of my participation. Since then, I’ve gone on to participate in both voluntary and compensated trials and I’d like to think that my participation has benefited science in some way. I guess I have to, indirectly. Will I continue to participate in clinical trials? Sure I will but before I sign up, I read every word of every page and make sure it is legitimate, professionally done and sanctioned by a major lab, clinic or university. There are literally thousands of clinical trials so choose wisely, do your homework and ask questions if you aren’t sure. For more information on clinical trials, go to: https://www.nih.gov/health-information/nih-clinical-research-trials-you/finding-clinical-trial.
My advice
I have participated in clinical trials for speech, swallowing, DBS related, quality of life, exercise, writing, and others that having Parkinson’s Disease affects. I know my symptoms are progressing but I look at it this way: If my participation in clinical trials helps the quality of care for the Parkinson’s community then it will have been worth the effort. It’s a small sacrifice of time but in the long run, I know I am affecting outcomes all over the world.
https://parkinsonsdisease.net/clinical/clinical-trials-my-experience/
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