Shortly before his 49th birthday, Peter DiBiaso was incredulous when he first learned that he had early-onset Parkinson’s disease. A zealous athlete used to pushing his body to its limits, he still remembers the initial disbelief: “I do triathlons, have completed an Ironman; I run marathons, I work out every day…, how can I be hobbled by this potentially terrible condition that’s only going to get worse?”
It started five years ago with a slight tremor in the small finger of his right hand and stiffness in his right leg. When the formal diagnosis was made two years later, it didn’t come as a surprise. At first, he didn’t want to talk about his condition as he didn’t want to be pitied, but time has changed his perspective on being an active member of the Parkinson’s community. “I can either choose to be engaged and really help people understand, or I can retreat into a cocoon. I chose to be out there and talk about it,” affirms Peter, an industry professional in clinical development. “For me, the greatest opportunity is to just continue living life as I always have. I’m comfortable talking about the disease and it certainly doesn’t define me.”
While medication may help manage the symptoms, there is currently no cure and no treatment that addresses the underlying cause of the disease, a neurodegenerative condition that affects nerve cells in the brain that control movement. Since there is no formal way to detect Parkinson’s, the diagnosis relies on brain imagery and analyzing the symptoms.
Clinical Trials are also for the Healthy
One of the first things Peter and his wife Vicky did after his diagnosis was to find and start participating in clinical trials, Peter as a patient and Vicky as a healthy volunteer.
Clinical trials are essential for bringing new treatments to patients as they allow researchers to assess potential future medicines, or ‘investigational products’. To gather the necessary clinical data, researchers rely on both patients and healthy volunteers to assess the safety and efficacy of the investigational product. Based on this data, regulatory authorities then decide whether or not to approve the treatment. Vicky, a nurse by training, has been involved in clinical trials for over 20 years.
“Participating in these studies gives you a sense of control,” says Vicky, who now is the Global Head Clinical Operations Strategy & Collaboration and Regional Head for the Clinical Studies Units across Asia Pacific, Eurasia, Middle East and Africa at Sanofi. “Before receiving the official diagnosis, there was always a part that thinks maybe it’s something else. When Peter was diagnosed, you have an incredible sense of lack of control, like how is the disease going to progress, but what we can control is our contribution towards research and accelerating it.”
Even though he has two uncles with the same disease, a genetic analysis did not detect any of the known familial causes of Parkinson’s disease. While they had some knowledge of the illness due to fact that it is in the family and that both Peter and Vicky are researchers, they were hungry for everything they could gather on the disease.
“We gravitated to patient advocacy groups and soon got very involved with the Michael J. Fox Foundation,” explains Vicky. Founded by the actor Michael J. Fox, who was diagnosed with early onset Parkinson’s disease at 29, the Foundation has a database known as the trial finder that lists ongoing and recruiting clinical studies to match the participant’s criteria. Peter has used the database to find clinical trials in which to participate. Since matching potential patients with the appropriate studies has been a major part of Peter’s job, he feels fortunate that he has a good understanding of clinical trials and knows just how important it is to enroll. “It was an opportunity to turn the tables and see firsthand what it’s like to be a study participant and not see it through the eyes of a researcher,” he says.
Sanofi also works with other institutions that further Parkinson’s research, including The Parkinson’s Progressions Markers Initiative, the Critical Path Institute and the National Institutes of Health Accelerating Medicines Partnership on Parkinson’s disease.
Finding the right clinical trial can be daunting, especially when you don’t have a scientific background, so Vicky works as a volunteer helping members of the local Parkinson’s community understand which studies they may qualify for and answer questions about research so they can determine whether or not they want to participate. “Not all clinical trials require patients to go to a clinic. In fact, there are online trials that you can do at home from your computer,” Vicky explains. “Health outcome data can also be collected on your phone.”
Living with the disease
Peter’s symptoms are currently managed by medication for his hand tremor and the stiffness in his leg. He continues to work out every day, run marathons and pursue his career in clinical development.
“Holding a phone in his right hand is something he typically doesn’t do. And when pouring a glass of wine, he will use both hands now. Buttons are also a challenge,” Vicky confides. “But other than that, he’s the same.” Weather and stress levels have a huge influence, however, daily exercise is very important and can help maintain mobility and control symptoms.
In 2016 and 2017, they ran the New York City marathon - Vicky’s first - on behalf of Team Fox of the Michael J. Fox Foundation.
“It was an incredibly motivating and powerful experience for me,” Vicky smiles.
In August, Peter and Vicky fulfilled their long-held dream of climbing Mount Kilimanjaro, the highest mountain in Africa, with a group of eight delegates from Team Fox to raise money for the Michael J. Fox Foundation in support of Parkinson’s.
“There are many different ways for people to get involved. Whether that’s running a marathon, donating funds towards research or taking part in a clinical study as a patient or healthy volunteer. The diseases we are fighting - be it Parkinson’s or cancer - really rely on those patient volunteers,” Peter urges. “The only way we are going to advance science is to promote participation in clinical studies. It’s so vitally important to get the message out.
“So here’s my message: get involved, get committed. If all of us participate in just one clinical study, it would make a huge, significant difference in speeding up the development timelines. We hear so much about the negative aspects but there is so much good being done.”
More about Parkinson’s disease1
Named after James Parkinson, the London doctor who first reported the symptoms in 1817, Parkinson’s disease (PD) is a neurodegenerative condition - an illness that affects nerve cells in the brain that control movement. It’s progressive, which means symptoms appear gradually and slowly get worse. Parkinson’s affects people of all races and cultures, while slightly more men than women are affected. Around 10 million people have the condition worldwide - less than one percent of the total population. Most people who develop Parkinson’s are over 60, but one in ten is under 50.
Everyone with Parkinson’s has different symptoms, but the most common are motor symptoms - a tremor, muscle rigidity and slowness of movement. Many also experience problems not related to movement, such as pain, anxiety and depression.