Research to End Parkinson’s

April is National Parkinson’s Disease Awareness Month. Named for the physician who first described it in 1817, Parkinson’s disease, or PD, is degenerative disorder of the central nervous system and typically affects motor functions. The disease manifests itself with tremors or twitching, rigid limbs, slow motor movements and instability when standing or walking. Other symptoms include cognitive impairments, including memory loss, dementia and psychosis. Symptoms progressively get worse over time.

Currently, more than 1 million Americans, including 110,000 military veterans, live with PD. Typically, Parkinson’s disease affects individuals over the age of 50, though young-onset Parkinson’s can occur as early as age 21. Probably the best known PD sufferer in America is the actor Michael J. Fox. Other well-known individuals diagnosed with the disease include boxer Muhammad Ali, singer Linda Ronstadt, the Rev. Billy Graham and Pope John Paul II. The impacts of PD vary quite a bit, and many individuals continue to live relatively normal lives despite their diagnosis.

Scientists don’t know what causes Parkinson’s disease, and there is no cure. To better understand the effects of the disease and to facilitate therapies and services to improve the quality of life for patients, a number of states have begun collecting data about Parkinson’s patients. This week, I presented Senate Bill 553 to the Senate Health and Welfare Committee. The “Missouri Parkinson’s Disease Registry Act” would authorize the University of Missouri to collect data on the incidence of PD in our state and to make their findings available to researchers. The committee issued a “due pass” recommendation, so the bill could come up for perfection at any time.

According to the Michael J. Fox Foundation for Parkinson’s Research, the total economic impact of PD in the United States is nearly $52 billion each year. That cost is roughly split between direct medical costs and indirect expenses, such as missed work, lost wages, forced early retirement and family caregiver time.

Little is known about how PD is distributed among different population groups and whether those patterns are changing. Senate Bill 553 will help researchers at the University of Missouri begin to get a handle on the scope of Parkinson’s disease in our state. The legislation establishes a system to help with the collection of patient population data, and creates a clinical advisory committee to oversee the project. Participation in the registry is entirely voluntary. Strong confidentiality provisions will ensure no specific identifying information is revealed. The Legislature will receive an annual report of the data collected and a fact sheet will be prepared for the public to access online.

Learning more about who PD affects and how the disease impacts their lives is an important step toward providing more effective care. Through amazing research the medical community has been able to help treat new cancers, slow the effects of Alzheimer’s and make great strides providing relief, if not cures, from a host of diseases. It’s my hope passage of SB 553 will speed the race toward more effective treatments for Missouri PD patients, and perhaps contribute to eliminating this devastating disease in the future. This is not a rural versus urban issue, or one that should divide people along party lines. It’s an issue that can unite everyone as we search for a cure.

It is my honor to serve the residents of Douglas, Howell, Ozark, Shannon, Stone, Taney and Texas counties in the Missouri Senate, and it’s always a pleasure to hear from friends and family back home. If I can help you in any way, please call my Capitol Office at 573-751-1882.  You can also visit my webpage at senate.mo.gov/mem33, on Facebook: @SenatorKarlaEslinger, or follow me on Twitter: @seneslingermo.