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Parkinson’s Disease Association Utah Chapter

Description of Program/s: The Utah Chapter of the American Parkinson’s Disease Association (APDA) partners with the Parkinson’s Disease Information and Referral Center (IRC) and the Department of Neurology at the University of Utah. Our common goals are:

•Support research to find a cure for Parkinson’s Disease. •Ease the burden of living with Parkinson’s Disease. •Provide those with Parkinson’s Disease the tools to maximize their quality of life. Living well with Parkinson’s Disease requires more than the right medication or surgery. Our primary purpose is to empower those with PD with the information and resources they need to take advantage of available health care options. Much support can be found through the IRC and through the many support groups that meet monthly across the state.
Physical Address: 729 Arapeen Drive Salt Lake City, UT Email Address: Rebecca.jorgensen@hsc.utah.edu Phone Numbers: 801-585-2354   Caregiver Education: • Description of physical, cognitive, emotional limitations or disease process your organization focuses on: Parkinson’s disease is a chronic, degenerative neurological disorder that affects one in 100 people over age 60. While the average age at onset is 60, people have been diagnosed as young as 18. There is no objective test, or biomarker, for Parkinson’s disease, so the rate of misdiagnosis can be relatively high, especially when the diagnosis is made by a non-specialist. • Parkinson’s disease is a disorder of the central nervous system that results from the loss of cells in various parts of the brain, including a region called the substantia nigra. The substantia nigra cells produce dopamine, a chemical messenger responsible for transmitting signals within the brain that allow for coordination of movement. Loss of dopamine causes neurons to fire without normal control, leaving patients less able to direct or control their movement. Parkinson’s disease is one of several diseases categorized by clinicians as movement disorders. • The Utah Chapter helps run support groups in the state, holds educational seminars, and has fund-raising events. The Parkinson’s Information and Referral Center is a program made possible by the APDA and the Department of Neurology at the University of Utah. It is designed to be a resource for individuals with Parkinson’s Disease in Utah and the surrounding areas including portions of Colorado, Wyoming and Idaho. The IRC is a resource center designed to educate, counsel and refer patients to medical professionals, as well as to increase public awareness about Parkinson’s Disease. The main focus is to assist anyone with special needs related to Parkinson’s Disease and to help maintain a quality of life that is fulfilling for patients, their families and friends. • Progression of condition and what to expect The progression of Parkinson’s disease varies among different individuals. Parkinson’s is chronic and slowly progressive, meaning that symptoms continue and worsen over a period of years. Parkinson’s is not considered a fatal disease. And the way that it progresses it different for everyone: Movement symptoms vary from person to person, and so does the rate at which they progress. Some are more bothersome than others depending on what a person normally does during the day. Some people with Parkinson’s live with mild symptoms for many years, whereas others develop movement difficulties more quickly. Nonmotor symptoms also are very individualized, and they affect most people with Parkinson’s at all stages of disease. Some people with Parkinson’s find that symptoms such as depression or fatigue interfere more with daily life than do problems with movement. • Recommended treatment options o There are many medications available to treat the symptoms of Parkinson’s, although none yet that actually reverse the effects of the disease. o It is common for people with PD to take a variety of these medications – all at different doses and at different times of day – in order to manage the symptoms of the disease. o While keeping track of medications can be a challenging task, understanding your medications and sticking to a schedule will provide the greatest benefit from the drugs and avoid unpleasant “off” periods due to missed doses. For more information, visit the website for the American Parkinson Disease Association: http://www.apdaparkinson.org/