There are many types of organizations that offer diverse types of resources, services, information and support.
Contact the Parkinson’s Foundation Helpline
Your first call can always be to the Parkinson’s Foundation Helpline: 1-800-4PD-INFO (473-4636). Trained Parkinson’s disease information specialists provide up-to-date information about Parkinson’s, referrals to healthcare professionals, emotional support, community resources and a wide variety of free publications. The Helpline is open Monday through Friday, 9:00am to 6:00pm ET. You can also email us any time at helpline@parkinson.org.
I am looking for information and resources related to:
- Aging
- Caregiving
- Healthcare professionals
- Government programs
- Medication assistance
- Financial, legal and insurance issues
- Activities of daily living
- End-of-life-planning
Aging Resources
These organizations offer information about services for older adults.
- Alliance for Aging: 800-96-ELDER (800-963-5337)
- Health in Aging: 800-563-4916
- National Association of Area Agencies on Aging: 202-872-0888
- Next Avenue: read the special report, Transforming Life as We Age
Caregiver Resources
These groups provide a range of options for caregiver education, support and networking.
- AARP Caregiving Resource Center: 877-333-5885
- ARCH National Respite Network and Resource Center: 919-490-5577
- Caregiver Action Network: 202-454-3970; Check out the Family Caregiver Toolbox
- Connecting with Caregivers, from the American Psychological Association
- Family Caregiver Alliance: 800-445-8106
- Family Caregiver Council
- Lotsa Helping Hands
- National Adult Day Services Association: 877-745-1440
- National Alliance for Caregiving: 301-718-8444
- National Caregivers Library
- Next Step in Care
- Well Spouse Association: 800-838-0879
Healthcare Professionals
There are many different types of healthcare professionals that can help you with different aspects of your caregiving journey.
- Aging Life Care Association (formerly National Association of Professional Geriatric Care Managers): 520-881-8008
- Find a Social Worker*
- Find a Therapist
- Visiting Nurse Associations of America
- Find a Physical Therapist* (The search will note physical therapists who have specialized certifications; choose someone with a specialty in geriatric or neurological rehabilitation)
- Find a Speech-Language Pathologist*
- Find an LSVT-Certified Clinician (You can search LSVT LOUD speech-language clinicians and LSVT BIG physical and occupational therapists)
*To find out if there are allied health professionals near you who have completed the Allied Team Training for Parkinson’s (ATTP) program, call our Helpline at 1-800-4PD-INFO (473-4636). ATTP is a Parkinson’s Foundation program that helps allied health professionals (physical, occupational and speech-language pathologists, social workers, nurses, music therapists and others) develop a deeper understanding and appreciation of the skills needed to help people living with PD.
U.S. Government Agencies
You and your loved one might be eligible for various government programs. Call or visit their sites for information and to find out if you qualify.
- Administration on Aging
- Centers for Medicare and Medicaid Services: 800-MEDICARE (800-633-4227)
- Eldercare Locator: 800-677-1116
- Social Security Administration: 800-772-1213
- National Institute on Aging: 800-222-2225
- Veterans Administration: 800-827-1000
Medication Assistance
There are general medication assistance programs as well as programs specifically for low-income individuals and families.
- Medicare Savings Programs: 800-MEDICARE (800-633-4227)
- NeedyMeds: 800-503-6897
- Partnership for Prescription Assistance
- State Pharmaceutical Assistance Programs
- Supplemental Security Income Benefits: 800-772-1213
Some pharmaceutical companies provide medication to people who cannot afford it. RxAssist offers a database of these patient assistance programs.
People with neurogenic orthostatic hypotension (nOH) may be eligible for financial assistance related to their treatment through a program administered by the National Organization for Rare Disorders (NORD). For information, contact NORD at noh@rarediseases.org or 844-827-8743.
The Patient Access Network Foundation is an independent, national 501 (c)(3) organization dedicated to helping federally and commercially insured people living with life-threatening, chronic and rare diseases with the out-of-pocket costs for their prescribed medications. PAN provides the underinsured population access to the healthcare treatments they need to best manage their conditions and focus on improving their quality of life. Since its founding in 2004, PAN has provided nearly 1 million underinsured patients with over $2.6 billion in financial assistance, through nearly 60 disease-specific programs.
Financial, Legal and Insurance Issues
These groups can help you navigate the unique, complex issues facing seniors and people with disabilities and help you access crucial services (such as, affordable healthcare).
- Medicare Rights Center: 800-333-4114
- Find a Financial Planner: 800-322-4237
- National Academy of Elder Law Attorneys
- Patient Advocate Foundation: 800-532-5274
Activities of Daily Living
There are many companies that offer products to help with activities of daily living (ADLs), including eating, bathing, dressing, toileting, transferring/walking, and personal hygiene. These can range from small, adaptive products such as weighted utensils to larger mobility equipment like walkers and wheelchairs. These products may be covered by Medicare, with a doctor’s order and if deemed medically necessary. In this case, they are referred to as durable medical equipment (DME).
These are just a few of the many companies that offer such equipment and other products to help with ADLs. Before buying, talk to a skilled therapist, such as an occupational or physical therapist, to find out what equipment is right for your loved one.
- Buck & Buck: 800-458-0600
- Independent Living Aids, LLC: 800-537-2118
- In-Step Mobility Products, Inc.: 800-558-7837
- Maddak Inc., Live Independently: 800-443-4926
- MagnaReady: 866-635-8866
- National Seating and Mobility: 615-595-1115
- Reliable Medical Supply, Inc.: 763-255-3800
End-of-Life Planning
These groups offer resources, guidance and support to help you plan ahead and provide care.
- Aging with Dignity: 800-537-2118
- National Hospice and Palliative Care Organization Caring: 800-658-8898
- National Physician Orders for Life-Sustaining Treatment (POLST) Organization: 503-494-4463
- The Conversation Project
