The Parkinson’s Action Network (PAN) has compiled a list of frequently asked questions (FAQ) below to better serve people with Parkinson’s, their caregivers, and their friends and families.
Please feel free to call us at 800-850-4726 or email [email protected] if you have any other questions.
- About Parkinson’s Action Network (PAN)
- Managing Parkinson’s Disease (Insurance, paying for Parkinson’s, Medicare)
- Finding a Doctor or Specialist
- Research & Clinical Trials
PAN is a nonprofit organization that serves as the unified voice of the Parkinson’s community advocating for better treatments and a cure. In partnership with other Parkinson’s organizations and our powerful grassroots network, we educate the public and government leaders on better policies for research and an improved quality of life for people living with Parkinson’s.
PAN has accomplished a great deal since it was started in 1991. In general, PAN ensures that Parkinson’s disease is among the many disease communities that receives important research dollars from the federal government through the National Institutes of Health, the Department of Defense, and the Food and Drug Administration.
We also ensure that people have a better quality of life by working with federal government agencies that have a role in the management of Parkinson’s disease, such as Medicare and Social Security.
Some examples of major accomplishments thus far include:
There are several things you can do to support PAN’s work.
1. Take Action
The first and most important is by being an active voice on the issues that matter. Simply sign up for our emails and action alerts and you will be notified when Members of Congress need to hear from you on an important Parkinson’s policy issue. In three easy steps, you can email your Members of Congress and help us ensure that the right decisions are made to get us toward better treatments and a cure for Parkinson’s. Sign up!
2. Become a Grassroots Leader
If you have the time and desire to take on a leadership role with PAN, you should consider volunteering as a Grassroots Leader. Grassroots Leaders in each state help to drive the state strategy for our policy work, mobilize state volunteers in person and online, and help us educate others about our important work. Learn more.
PAN is a 501(c)(3) nonprofit organization, which means we are 100 percent funded by generous donations from individuals, corporations, and foundations. We could not do the important work that we do without support from people like you. Please consider a gift today.
PAN has Grassroots Leaders in almost every state around the country. Find PAN in your state and contact Grassroots Leaders in your community.
Managing Parkinson’s Disease
As someone with Parkinson’s disease, you have several options for health insurance.
If you do not receive medical benefits from your employer and do not qualify for Medicare or Medicaid, visit healthcare.gov to visit the Health Insurance Marketplace established by the Affordable Care Act (ACA). For more information about the ACA and the health care exchanges, visit our ACA section.
To find out if you qualify for Medicare, Medicaid, or other government benefits, visit Benefits.gov.
Some individuals with Parkinson’s may also qualify for Social Security and Supplemental Security income disability. Learn more at ssa.gov/disability.
The very best place to get help paying for prescription drugs is your drug manufacturer. The phone number is often found right on the medication’s label or packaging. However, another resource is RxAssist, a nationally recognized, web-based medication assistance resource center.
The American Elder Care Research Organization has also put together resources on their Paying for Senior Care website specifically for people with Parkinson’s disease.
Finally, the Patient Access Network Foundation provides about $16,500 a year in grants for people with Parkinson’s disease who need funds.
The Patient Advocate Foundation is a nonprofit organization that solves insurance and health care access problems by acting as a liaison between patients and insurers, employers, and/or creditors. Learn more at www.patientadvocate.org.
We hear from people who have challenges receiving therapy for two reasons:
- They have reached a cap for Medicare therapy services.
- They have been told that they are no longer improving and therefore do not qualify for any more therapy.
PAN has worked hard to ensure that there are solutions for both of these problems. While there is a combined $1,920 yearly cap for physical therapy and speech-language therapy, and a separate $1,920 yearly cap for occupational therapy, there is also an exceptions process for services deemed medically necessary. Learn more about Medicare therapy caps and the exceptions process.
In addition, PAN joined a class action lawsuit against the Center for Medicare and Medicaid Services (CMS) over a standard for Medicare coverage that we believed discriminated against people with Parkinson’s and other chronic degenerative diseases. The parties reached a settlement and starting in 2014, Medicare beneficiaries can no longer be denied coverage for physical, occupational, and speech-language therapy and other skilled services solely for lack of improvement. Learn more about Medicare improvement standard.
The Transportation Security Administration (TSA) Cares Help Line (855-787-2227 or online) has answers about screening policies and security checkpoints, and information about requesting a Passenger Support Specialist.
PAN has compiled a list of books that are either well known in the Parkinson’s community or have been written by PAN Grassroots Leaders.
Finding a Doctor or Specialist
It is very important for people with Parkinson’s to see a neurologist or movement disorder specialist. There are several resources to help you find a specialist near you in the list below.
- Movement Disorder Specialist Finder
Partners in Parkinson’s and the International Parkinson and Movement Disorder Society have collaborated to create a resource that searches for movement disorder specialists in the United States. A movement disorder specialist is a neurologist who has received additional training in Parkinson’s disease and other movement disorders including dystonia, chorea, tics and tremors.
- Morris K. Udall Parkinson’s Disease Research Centers of Excellence
The Morris K. Udall Parkinson’s Disease Research Centers of Excellence fund Parkinson’s research at 14 centers across the country. These centers utilize a multidisciplinary research approach to learn about the fundamental causes of Parkinson’s disease as well as to improve the diagnosis and treatment of Parkinson’s and related neurodegenerative disorders.
- Parkinson’s Disease Research, Education, and Clinical Centers
The Veterans Affairs Department created six regional Parkinson’s Disease Research, Education, and Clinical Centers (PADRECCs), which provide comprehensive, state-of-the-art care to veterans with Parkinson’s disease.
PAN has a section dedicated to caregivers that includes a webcast series. Several caregiving and Parkinson’s disease organizations also have resources:
- Helpful statistics about caregivers in the U.S. from the Caregiver Action Network
- Caregiving resources, including a recent webinar on parenting and Parkinson’s, from the Parkinson’s Disease Foundation
- Advice for loved ones and caregivers from The Michael J. Fox Foundation for Parkinson’s Research
- Caregiving resources, including “PD Caregiving 101,” from the National Parkinson Foundation
- Information and tips for caregivers from the Davis Phinney Foundation for Parkinson’s
Other caregiving organizations include:
- Family Caregiver Alliance
Through its pioneering programs of information, education, services, research and advocacy, the FCA sustains and supports the families and friends providing long term care.
- Long Term Care
An information site on long term care.
- National Family Caregivers Association
An information source for caregivers nationwide. The site also provides contacts for support groups.
- National Respite Coalition
The National Respite Coalition works to secure quality, accessible, planned and crisis respite services for all families and caregivers in need of such services in order to strengthen and stabilize families, and enhance child and adult safety.
- National Respite Locator Service
The National Respite Locator Service helps parents, caregivers, and professionals find respite services in their state and local area. The service is also useful when a family travels or must move to another state.
- Well Spouse Association
The Well Spouse Association, a nonprofit 501(c)(3) membership organization, advocates for and addresses the needs of individuals caring for a chronically ill and/or disabled spouse/partner. We offer peer-to-peer support and educate health care professionals and the general public about the special challenges and unique issues “well” spouses face every day.
PAN will post about major developments in Parkinson’s disease research in two places:
Several of the other national, regional, and local Parkinson’s disease organizations also work on research and we encourage you to visit their websites to learn more.
The Michael J. Fox Foundation for Parkinson’s Research has a robust tool for Parkinson’s disease clinical trials known as the Fox Trial Finder.
Other resources for clinical trials include
Please call us at 800-850-4726 or email [email protected] if you have any other questions.