Resources Medical Information Do not crush list: (never crush a drug to use in applesauce or a feeding tube if it's on this list). If it is, ask your doctor for an alternative.
Drug, food, and condition interactions: check PDR.net, Merck Manual, drugs.com
Medicare & Medicaid Any PALS diagnosed with ALS is eligible for Medicare before the age of 65, if they have worked enough. If you choose traditional Medicare (vs. Medicare Advantage), you will also need to select a Part D plan for drugs and are encouraged to also select a Medicare Supplement plan for expenses that Medicare does not cover such as deductibles and co-pays. A supplement will not pay for expenses that are outside Medicare's scope, such as "custodial care," assistance with the activities of daily living such as transfers, toileting and nutrition, at home.
You can see plans in your zip code and what your drugs would cost at medicare.gov. There, you can also see what State and federal programs might provide you with extra financial assistance.
Depending on your state, assets, and income, you may also be eligible for Medicaid, which provides some home health, dental, vision, and long term care benefits that Medicare does not. If you have both Medicare and Medicaid, your health care expenses are usually limited to those that neither program pays for.
Programs for low-income households The four Medicare Savings Programs help low-income people pay Part A/B premiums and some other costs, such as deductibles, coinsurance, and copays.
The Medicare Rights Center can also answer questions about these programs via its toll-free number: 800-333-4114.
There are also federal subsidies for low-income Medicare Part D (the drug plan) recipients' costs. This is called Extra Help. You can apply online at the Social Security Administration website or by calling 800-772-1213. You can also apply by visiting your local Social Security office.
Nonprofit cremation/funeral network Look for the "co-op" designation in your area. You can join in advance for a better price and less stress for survivors on the day. Some members also offer newer options like forest burial and a less resource-intensive cremation process ("human composting").
ALS-specific programs The ALS Association operates a program with the Patient Advocate Foundation to help PALS access benefits and care. They can be reached at 844-244-1306 or online.
No personal information is sought or retained by this Web server, other than any email you choose to send, and no site content may or should be construed as professional or medical advice.