The Future of Parkinson's in the Palm of Your Hands

After seeing, caring, and treating strangers, patients, and loved ones with devastating brain illnesses such as Parkinson’s, I felt compelled to help in whatever way possible to advance the knowledge and understanding of the brain....Thus, I began to participate in clinical studies in hopes of helping to find a cure for me, my patients, and my loved ones.

Decision to join

I have been involved in clinical research since my early twenties as a control, a patient, and a researcher. In just a couple of decades, my focus switched from volunteer control to researcher to patient. Thus, my needs changed. But throughout all my years of involvement in clinical research the notion of "paying it forward” remained - honoring those that sacrificed in the past and learning from previous mistakes to retain humanity and dignity of those suffering and needing care now and in the future. So for me, offering a new treatment or participating in one is about trying to find the ‘right' treatment that will improve the lives of those with the same symptoms.

Expectations

From years of experience, I know that there are always risks involved so it is important to be honest with yourself as to the motives of your participation and what your expectations are. For me, since I have discovered that I don’t do well with procedures or tolerate a lot of medicine changes as my disease has evolved, I limit my participation now to non-invasive procedures and drugs that we already have some information on. This was not always case keeping in mind that our bodies and circumstances change. Device evaluation and standardizing scales is an equally important job for a volunteer. Of course this is different for everyone and being truthful with yourself is paramount!

Pearls of wisdom

I have seen many things through my years in medicine. The one constant is that most people rarely consider the possibility of a negative outcome. This is not to say that there are a lot of positives like having a closer rapport with doctor, getting free medication and testing along with financial compensation at times. However, in the excitement of the moment or the urgent need to help with present symptoms many forget that Parkinson's is a constantly changing one which will have to be dealt with in the future as well. Thus, one must keep in mind that sometimes participating in one trial can limit not only participation in future trials but also limit the established treatments offered as was the case for many, and a friend in particular who underwent a surgical procedure which proved ineffective. Yet, that individual is no longer able to receive known surgical treatments or participate in other trials despite fact that disease has advanced.

Playing a POSITIVE role in research

Although as with anything, there are pros and cons. Review risks and benefits with your physician and don’t be afraid to limit your role in clinical trials as long as you remember to be honest with yourself and your doctor in order to find the right study that will suit your needs. This will not only maximize your success and well being but allow you to feel confident in helping yourself as well as future generations.