Next week, I will join thousands of healthcare professionals, neuroscientists and families as we rally together in Portland around one shared goal: ending Parkinson’s disease. It is here, at the 4th triennial World Parkinson Congress (WPC), that some of the greatest minds in Parkinson’s and the patient community will discuss the latest breakthroughs in Parkinson’s research and advancements in patient care. It is no secret that this disease has a devastating effect on the people who are afflicted by it. But what may be less known, and what I think WPC will help bring to the surface, are the reasons why we should have hope for the future of Parkinson’s.
When I look at the community and reflect on all of the good work that is being done today, there are many reasons to be hopeful. Here are my top three:
1. The Quest for Biomarkers: Imagine being on a boat in the middle of the ocean without GPS, a compass or a map. Needless to say, it would be challenging to find your way home. When it comes to neurodegenerative diseases, biomarkers are akin to these navigational tools; they are disease indicators that help point researchers in the right direction toward the development of diagnostic tools and new therapies. Identifying tools that provide an early and accurate Parkinson’s diagnosis are essential since our ultimate goal is to develop therapies that not only treat Parkinson’s’ symptoms, but slow, delay, or prevent its arrival entirely (what are known as “disease modifying” treatments). A definitive biomarker for Parkinson’s disease has not yet been identified; however, significant time, effort and funding are being dedicated to this pursuit. One example is the Parkinson Progressive Marker Initiative (PPMI), launched by The Michael J. Fox Foundation in 2010. This impressive project has 33 clinical sites in 11 countries and nearly 800 participants who are contributing important information to a Parkinson’s database that can be accessed and used by researchers worldwide. This is just one of many research projects that give me confidence that a biomarker for Parkinson’s is on the horizon.
2. Greater Symptom Recognition: Although “motor” symptoms, like shaking, tremor, slowness of movement and rigidity, may be the most recognizable signs of Parkinson’s, the disease is also associated with many “non-motor” problems. For example, cognitive impairment, ranging from mild memory difficulties to dementia; mood disorders, such as depression and anxiety; sleep difficulties; speech and swallowing problems; and dizzyness or fainting due to low blood pressure when standing. Despite years of immense progress, today, both the motor and non-motor symptoms of Parkinson’s disease (which progressively worsen over time) can make it difficult to maintain an active and satisfying lifestyle. Until recently, the Social Security Administration (SSA) only considered motor symptoms when evaluating disability insurance applications. Thanks to the relentless effort and energy of the Parkinson’s community, this month, the SSA will officially change its rules for evaluating disability insurance for people with Parkinson’s to include certain non-motor symptoms. This change signals broader acceptance and understanding of the full impact of the disease, and is a big win for the Parkinson’s community.
3. A Strong Community: I had the privilege of attending the Parkinson’s Unity Walk in April and was encouraged by what I saw. Everywhere I looked, I felt the strength and support of this amazing community, and was reminded why I love my job. I’m lucky to work at a company that in addition to making a considerable investment in research and development into this challenging disease not only sponsors these events, but encourages its employees to show up and walk side-by-side with the community. It’s through these relationships that we can better understand the community’s needs in order to more effectively support patients and their families. I am also in awe of the incredible work being done by patient advocacy organizations. Whether it’s fighting for new policies and legislation, developing educational programs or raising money for research, these groups work tirelessly to support the needs of people with Parkinson’s and their families. When I look at the hope and hard work of this community, I can’t help but have hope myself.
Although a cure for Parkinson’s may be a long way away, every day, we are striding closer to that goal. As these advancements are celebrated at the WPC, a spark of hope should exist in all of us.