TEWKSBURY - Sue Dubman has worked in the health care and life sciences field for more than 20 years. Yet despite her depth of knowledge, she was completely caught off guard in 2009 when she was diagnosed with Parkinson’s disease, a progressive disorder of the nervous system resulting in tremor, slowed movement, impaired balance and speech.
“I was extremely depressed six months before I was even diagnosed,” Dubman said. “I was never depressed before. I couldn’t figure out why - nothing had changed in my life.”
Dubman was experiencing the early onset of Parkinson’s disease. “A lot of people don’t realize there are non-motor symptoms associated with Parkinson’s,” she said. According to the Parkinson’s Disease Foundation, almost 50 percent of patients had depressive episodes in the five years prior to diagnosis. Depression, anxiety, and apathy are frequently seen in patients with Parkinson’s.
Through the website bestdoctors.com, Dubman found a specialist at Beth Israel Deaconess Medical Center and took a multi-disciplinary approach to her treatment; seeing several doctors for her varied symptoms, such as tremors and sleep disturbances. “I had trouble sleeping longer than 2-3 hours a night. Swallowing and speech were also affected – when the muscles aren’t working properly, food can go down the wrong pipe.”
It took Dubman two years to accept she would be a Parkinson’s patient for life. She realized she needed a new purpose and became an active advocate through the Parkinson’s Action Network, joined the Outreach Committee for Michael J. Fox’s Foundation, Fox Trial Finder, and became a clinical trial participant.
Going from researcher to clinical trial patient was a role reversal for Dubman. She saw first-hand the frustrations of having a disease without a cure and realized vital changes needed to take place. One was the amount of time it takes for new trial drugs to hit the market. Utilizing the talents of young scientists who think out of the box would be the obvious choice, however “large companies who do the research have done it a certain way for a long time and are adverse to change”, Dubman said. “Anyone who has a degenerative disease can’t afford for companies to take 15 – 20 years to bring a treatment to market. Time is my most precious commodity.”
The next thing that needs to change, according to Dubman, is how research is funded. “Research dollars have been cut,” she explained. This decrease in funding will eventually have a domino effect on the economy, both in job loss and productivity. “We’re not going to keep up with the rest of the world, we won’t be competitive, and we won’t have as many good scientists here. They will go where they can get funding, like China or Europe. These countries have increased their budget for research by 30% and we have decreased ours by 20%.”
Additionally, Dubman adds, “Let’s put our money where we can benefit humanity. It says something about our culture that we spend so much money on military activity and so little on research.”
Early October, Dubman attended the 3rd World Parkinson Congress in Montreal, Canada to speak to the Parkinson’s community about the patients’ role in research. Neuroscientists, doctors, researchers, patients, and family members from 70 countries met to discuss the latest scientific discoveries and advocacy efforts. The mission is to work towards a cure with optimum treatment practices so Parkinson’s patients can have the best possible quality of life. For example, Parkinson’s patients should try to exercise to ease symptoms and possibly slow the disease. “Exercise, sleeping well, and going to a (qualified) neurologist to determine what drugs you should and shouldn’t have,” need to be part of the treatment plan, said Dubman.
When asked why she’s so deeply involved in patient advocacy, Dubman replies, “I don’t want people to get the same message I got when I was diagnosed, which was, ‘You have a terrible disease and there’s nothing we can do about it but cover the symptoms.’”
Dubman will continue to spread awareness about the patient’s role in clinical trials, the need for advocacy, and increased funding for research.
“My hope is that in the future the doctor will say, ‘You have a terrible disease but don’t worry; we have something to slow it, stop it, or reverse it. You can go on and live your life.’ That is enough for me to do what I do.”
The next World Parkinson Congress will be in Portland, Oregon in 2016: worldpdcongress.org/
For more information on the Parkinson’s disease Foundation visit: pdf.org