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Real Talk from Participants

My Research Journey: Taking Control and Taking Part

A photo of Sharon Roberts in Philadelphia, Pennsylvania

Sharon Roberts in Philadelphia, Pennsylvania

My name is Sharon Roberts, I’m 75 years old and live in Dallas, Texas. Originally from Flushing, New York, I’m a retired legal secretary.

I was formally diagnosed with Parkinson’s disease by two neurologists in 2012. Since I know my own body, I was not surprised, and had made the decision that Parkinson’s was not going to get me, either physically or mentally!

My son is a nurse, so he and I discussed options about what to do going forward. He told me, "The best thing that you can do is see if you can participate in research." And I had wanted to get involved in research simply because I know that without somebody participating, diseases like Parkinson’s in the future would not be cured.

The first place I looked was on The Michael J. Fox Foundation (MJFF) website; I figured who knew more about Parkinson’s than Michael J. Fox. I found Fox Trial Finder, MJFF’s online study matching tool. I learned I was interested in observational studies, where they don’t give you any medication or placebo. I found dozens I was interested in, however lots of them were not convenient, distance being a major factor. But one was at The University of Texas Southwestern, in Dallas. It was to prove that walking, as a form of exercise and therapy, would help balance, prevent falling, improve mood, and just keep me going. I went through the pretrial analysis and then was entered into the study. The end result proved that I ended up in better condition than I started, and it was fun. I continued walking why not, it helped! I did a follow-up analysis about a year later, and my results were as good or better than before. This was the beginning.

I then found a one-day study on the voice. The study was at Parkinson Voice Project, an organization very close to where I live. I did the testing and found out I had lost about 40 percent of the volume in my voice. I had no clue that could happen, but thinking back, I remembered people always asking me to repeat myself or telling me that I was mumbling. So I went through their SPEAK OUT program, then into the Loud Crowd program, and now I have my voice back. I have learned to speak with intent. Parkinson’s can affect your ability to do things automatically, so you have to be intentional. Another study that I found was related to boxing, which was for balance, agility and strength (and a bit of self-defense). I continue to take group therapy voice classes and boxing classes for Parkinson’s patients.

All of the studies in which I have participated have proven that I can maintain or increase my body strength, balance, agility and voice.  I’m stronger and healthier than my diagnosis. I continue looking for additional studies on Fox Trial Finder  and through my neurologist and friends who have Parkinson’s.

MJFF also offers a way for people to get involved in research online without needing to go to a medical center or academic institution. This is particularly important right now as we are going through a pandemic — the coronavirus.  I signed up for MJFF’s online study, Fox Insight, because it’s easy to participate and make a difference. They send surveys about health and symptoms every three months. I like the way the study goes into detail about why it’s important, and how long each survey is going to take.

Being a participant for Fox Insight and other studies has proven to me that research works. Looking for a cure is very important, and without the help of participants taking part, the results we are searching for will take longer to attain. Think about how wonderful it would be if you and millions of others could be cured and know that you were a partner in reaching that goal.

I admit, I have been blessed. Were it not for Parkinson’s, I would not be writing this blog, not have met so many wonderful people along the way, and of course not made my body and my mind stronger. Joining a study can be good for you and good for everyone living with any incurable disease.

To learn more or register for MJFF’s online clinical study, visit foxinsight.org. And to learn more about coronavirus and Parkinson’s, read this blog post.

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