Participant Testimonials
"I have been diagnosed with Parkinson's 14 years. Eight years ago I joined a clinical trial. I had no idea (nor did the doctors and researchers) what might happen if I did this, because it was the first time for human participation. And this particular trial required brain surgery. You may think it was a tough decision for me and my family, but it wasn't. What did I have to lose? And what might I gain to help me, those with Parkinson's now, and those who might get it in the future? When you ask those questions and put faces - real people - with the now and the future, the decision is much easier. When I think about one of my children or grandchildren having to suffer with this illness, when I see anyone with the disease trying to live a good quality of life, the point is driven home. It's not just about the future - it's about now.”
- Peggy (PDtrials subscriber)
"I was diagnosed with Parkinson’s disease in October of 2005 at the age of 50. I immediately started "googleing" everything as I could not imagine sitting around for a year waiting for my symptoms to worsen. I felt so powerless. In my searches, I came across PDtrials and have been receiving the emails ever since. Within a month of my diagnosis I had enrolled myself into [a] study. In addition to gaining some control and feeling empowered, this has also allowed me to develop a relationship with a Movement Disorder Specialist. I next read about [another] study on PDtrials and I am still participating in that study. I chose each study based on where I was at the time with my PD. I just wanted to let you know what a difference participating in clinical trials has made in my adventure with this disease.”
- Linda (PDtrials subscriber)
"I was diagnosed in January 2002 at the age of 43. My first experience with clinical research was as a test subject in a case study for a voice therapy organization. As a participant I received speech therapy for free. I was amazed how it helped. Not all studies will have such immediate benefit, but because of all us participants in studies we will develop better treatments and eventually find a cure for this disease. That in itself is a real motivation for participating. I participate because it is the right thing to do, for myself, for my children, and for the millions of people who have Parkinson’s disease. Without participation there will be no cure."
- Mike (PDtrials subscriber)
"I've been in a PD trial for two years now. My main reason for being in the study is that I can get good care by a physician who is up-to-date on the medicines used in PD. I feel very comfortable with the prescribing doctor I have through the trial. Additionally, he has given me some good advice about how to take the medicine so that it works best for me. [And] while I have to travel out of town to participate in the trial, they have offered to pay my expenses to get there, so it really makes it worth my while. I feel that I am getting the best care possible.”
- Dorothy (PDtrials subscriber)
"I was diagnosed with PD in January 2003. I immediately tried to find out everything I could about the disease. I learned it is progressive and incurable. But I kept telling myself there must be something I could do to fight it. Then I stumbled across "clinical trials” as I searched the internet. I found a listing of clinical trials for PD and located the ones in my community. I focused on one in particular with the potential to be neuroprotective. Here was a trial with great promise – to slow or stop the progression of PD! If I got the drug, and it worked, I’d have the opportunity to get it years before the general population – years during which the progression of this horrible disease would be slowed down, or even stopped…”
- Reprinted with the permission of Jean Burns; from the Winter 2007 "Power Over Parkinson's Newsletter," of the AZ Chapter of APDA
"I am 65 years old and a retired nurse, and I have been doing trials for years now. My Parkinson’s was diagnosed 11 years ago, and right now I am doing okay. So, I’m able to drive into the city near my home to volunteer for trials at the university there. They have a wonderful group of clinicians who are willing to help, explain everything to you and make you feel perfectly comfortable even if you are having trouble counting backwards by sevens, or looking silly running after a laser dot. I can’t say enough wonderful things about participating in trials, and wish more people would attempt one or two."
- Anya (PDtrials subscriber)
"I'm 53 and was diagnosed with Parkinson's in ‘99. I've been attending a dance class for people with Parkinson's, and in September I joined many of my fellow dancers in a Phase 2 clinical trial exercise class in which many of them had already been participating for Phase 1. It's a rigorous class, run by professors of physical therapy and exercise physiology (and their students), and was designed by a fellow class member with PD who had trained to run an exercise class. Class members are both genders, range from those recently diagnosed to some with who have been diagnosed with PD for 20 or more years, and we are in our 50's through our 70's. Many of us feel much stronger and better able to manage our "off" periods, especially at night when we feel the most disabled. Personally, my ability to pull myself up to a sitting position and get out of bed in the middle of the night feels way improved. Also, because my legs are stronger, and my balance improved, I'm better able to avoid falls."
-Leonore (PDtrials subscriber)
Contact PDtrials at info@pdtrials.org if you have a story about your participation in a clinical study that you would like to share.
