Groups that Can Help
There are many types of organizations that offer different 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 will give you up-to-date information about Parkinson’s, referrals to health care professionals, emotional support, community resources and a wide variety of free publications, including the new Caring and Coping workbook, a comprehensive guide for caregivers of people with Parkinson’s at any stage. The Helpline is open Monday through Friday, 9:00am to 6:00pm ET. You can also email us at firstname.lastname@example.org at any time.
I am looking for information and resources related to:
- Health care professionals
- Government programs
- Medication assistance
- Financial, legal and insurance issues
- Activities of daily living
These organizations offer information about services for all 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
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
Health Care Professionals
There are many different types of health care 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 Speech-Language Pathologist
- Find a Therapist
- Visiting Nurse Associations of America
U.S. Government Agencies
There are various government programs you and your loved one might be eligible for. Call or visit their sites for information and to find out whether 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
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 email@example.com or 844-827-8743.
The Patient Access Network Foundation was giving out funds to help people with Parkinson’s pay for their medications through the Parkinson’s Disease Assistance Program. However, help was provided on a first come, first served basis, and all the resources have been distributed. We do not know if or when funds will be replenished, but you can call them at 866-316-PANF (800-316-7263).
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 (e.g., affordable health care).
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 they are “medically necessary.” In this case, they are referred to as “durable medical equipment” (DME). Below 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.
- 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
- Specially for You, Inc. Specialty Clothing: 605-765-9396
These groups offer resources, guidance and support to help you with plan ahead while providing good care.
- Aging with Dignity: 800-537-2118
- National Hospice and Palliative Care Organization CaringInfo: 800-658-8898
- National Physician Orders for Life-Sustaining Treatment (POLST) Organization: 503-494-4463
- The Conversation Project