4 resources for people living with Parkinson's disease

Parkinson’s disease is a neurodegenerative disorder that most commonly occurs in people over the age of 60, though it can and does occur at younger ages. A neurodegenerative disorder is a condition where cells of the central nervous system (the brain and spinal cord) stop working or die off. With Parkinson’s disease, this loss of cells occurs in a part of the brain that controls movement.

Tremors, muscle stiffness, slowed movements, and problems with balance and coordination are the primary symptoms. Parkinson’s disease can also cause problems with speech, swallowing, bladder control, and constipation. It is a progressive disease, meaning symptoms become more severe with time, and new symptoms appear over time.

There is no cure for Parkinson’s disease, and treatment focuses on symptom management and maintaining the best quality of life possible. Treatment typically includes medications to reduce and control symptoms, as well as medications to help reduce side effects. Physical therapy is another important part of treatment. Because of the progressive nature of Parkinson’s disease, a treatment plan will often evolve over time.

For people living with Parkinson’s disease and caregivers, it helps to have resources and support. This can mean knowing where to look when you have a question like “Where can I find a neurologist?” It can also mean knowing where to find patient education, financial assistance, and places to connect with other people whose lives have been affected by Parkinson’s disease.

The resources below can help you get started.

American Parkinson Disease Association (APDA)

The website for the APDA features information on many different aspects of living with Parkinson’s disease, including managing symptoms, assembling a healthcare team, accessing disability benefits, and participating in clinical trials. It has pages dedicated to young onset Parkinson’s disease, veterans with Parkinson’s disease, pages of topics relevant to caregivers, and an online community support forum called Smart Patients. It also offers pages in Spanish as well as live phone support in Spanish.

Parkinson's Foundation

If you are looking for resources in your area, the Parkinson’s Foundation website is a good place to start. It features a database of healthcare centers and local resources that is searchable by zip code. It also offers a library of fact sheets, downloadable books, and webinars covering a wide variety of topics, including several available in Spanish. If you are living with Parkinson’s disease, you can also enroll in the PD GENEration: Mapping the Future of Parkinson’s Disease initiative. This is a national study that provides genetic testing for people with Parkinson’s disease, with the goal of learning more about the role that genetics play in the development of Parkinson’s.

The Michael J. Fox Foundation for Parkinson's Research

The mission statement of the Michael J. Fox Foundation for Parkinson’s Research is to eliminate Parkinson’s disease—and if you are living with Parkinson’s disease and interested in participating in a research study or clinical trial, the site is worth a visit. The site also offers pages of information for people living with Parkinson’s disease, covering the basics of the condition as well as topics like work and disability, building a care team, and mental and physical health.

Family Caregiver Alliance (FCA)

FCA provides a number of services to caregivers and people living with conditions like Parkinson’s disease, Alzheimer’s disease, stroke, and other conditions that cause physical and cognitive impairments. The Parkinson’s Disease Caregiver Resource Guide provides links to numerous organizations and online resources that focus on different aspects of caregiving—including emotional support, community resources, and legal and financial planning. There is also the resource library and “Caregiver College” series of instructional videos, covering practical skills many caregivers will need to learn.