City Native Featured In Parkinson’s Documentary Series
The University of Rochester has in recent years been working on a film project regarding Young Onset Parkinson’s Disease.
Recently, this documentary has included a woman from Jamestown. The documentary is actually a series highlighting people living with Parkinson’s to help others realize the impact that the neurological disease has on people.
In 2017, the University of Rochester partnered with Dutch neurologist Bas Bloem, who began the series in Dutch, to turn what is known as Parkinson TV into English. This is now the third season.
According to Alistair Glidden, clinical project manager of marketing and digital technologies for the Center for Health and Technology at the University of Rochester, the plan behind the documentary series is to make people more aware of Parkinson’s.
“We really are trying to bring about more advocacy for Parkinson’s Disease,” Glidden said. “You know, there was an increase of knowledge and advocacy for things like Polio, which we now have a vaccine for, and for HIV, which used to be a death sentence, and even breast cancer. But now all of those are treatable.”
Glidden added that part of the effort is to decrease the usage of environmental factors, such as the usage of certain chemicals that can lead to Parkinson’s Disease, along with finding ways to get better care models to those with Parkinson’s, such as telemedicine for those who are in need of specialty care that they might not be able to get where they live. “We’re also looking for funding for more research,” Glidden said. “The most effective treatment for Parkinson’s that we have today was made in 1961. We don’t even drive cars that came from that time anymore.”
The documentary series involves people from all over the globe and the U.S., including specifically New York, North Carolina and Texas. Rachel DePietro, who now lives in Houston but grew up in Jamestown, said she was chosen for the documentary series through one of her Parkinson’s groups that she is involved with in Houston, and because her story is a unique one.
“I first had symptoms in 2015, (at the age of 28),” DePietro said. “I was misdiagnosed many times over the last five years. They thought at one time I had a brain tumor that was causing seizures. It wasn’t until I saw a specialist focusing in neurologist movement at Baylor University down here in Texas that I was diagnosed with Young Onset Parkinson’s in March 2020, (at the age of 33), right before COVID hit.”
Since then, DePietro has become very involved in Parkinson’s efforts in Houston, including becoming part of the Houston Area Parkinson’s Society, otherwise known as HAPS. It was through HAPS that the University of Rochester found her for the documentary.
“Dr. (Ray) Dorsey, who’s a part of HAPS, wrote a book about Parkinson’s (in collaboration with Bloem) and they originally came to film them,” DePietro said. “They told them they needed someone else to film and I was suggested because of my unique experience. I have no family history of Parkinson’s, and I was misdiagnosed and given the wrong medicine many times.”
DePietro’s participation in the documentary series was initially filmed in Houston, but at one point they traveled with her back up to where she used to live in Jamestown and filmed there for a month, meaning footage of Jamestown will also be included in the documentary.
“It was a pretty cool experience,” DePietro said.
According to Glidden, the real effort that the University of Rochester is trying to make with the documentary series is that of educating people about Parkinson’s Disease along with causing a “catalyst to action.”
“Some people might not fully understand Parkinson’s, including people who have the disease,” Glidden said. “We want to get people engaged and talking about it and forming a new understanding of the disease. It’s the people who live with the disease every day who are going to be the ones to end it, not the neurologists. If everyone can get their voices heard then there will be more action towards this goal to end Parkinson’s for good.”
The University of Rochester’s effort has already led to things such as the formation of the PD Avengers group, which is completely patient-led and spans over 70 countries with more than 3,500 people involved. The Avengers exist to help people learn more about the disease and to continue the effort to bring it to an end. This is just one of the many impacts Glidden expects to come from the documentary series.
“They say that up to 1 in 15 people are at risk for Parkinson’s in their lifetime,” Glidden said. “Anyone can be affected by this disease. So the more people who know about it, the more that can help to make an impact to end it, which could be in their own self interest.”
DePietro agreed that the documentary series is going to have a big impact, especially for patients who have the disease themselves who might not know much about it.
“There’s a famous saying that if you’ve met one person with Parkinson’s then you’ve met one person with Parkinson’s,” DePietro said. “No two people are alike with this disease. It’s also known as an old man’s disease, which is not true. It can and does affect young people, including women. I always say that knowledge is power, and that you know your body best. Advocate for yourself, and get a second opinion if you think it’s needed. This documentary will urge people to fight for the right diagnosis and to understand it better and get the help that they need. The best understanding of the disease will lead to the best outcome.”
For more information and resources involving Parkinson’s, Glidden encourages people to check out the PD Avenger’s website at pdavengers.org along with endingpd.org or parkinsontv.org where all current episodes of the documentary series are available.
“We just hope that this can benefit as many people as possible,” Glidden said.
DePietro agreed, saying that especially for those with the disease, knowledge and awareness of what the disease does and how to slow it down is the most important thing that someone can have. Things such as exercising and dancing can slow down symptoms, including specialized classes such as Rock Steady Boxing and Dance with PD, programs that are offered in Houston for the Parkinson’s community.
“Be your own advocate for your body,” DePietro said. “You know your body best. Never give up. If my story can help at least one person out there, then this has all been worth it.”