The road ahead · Alongside ALS

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Weeks 1–6

Connect with a multidisciplinary ALS clinicAsk your neurologist for a referral, or find a certified center.
Register with your local ALS Association or ALS United chapterThey assign a care coordinator and unlock local grants and loan closets. Find your chapter.
Ask about genetic testing and counselingResults can open specific treatments and trials.
Start a documents folderA signed diagnosis letter, insurance cards and receipts unlock most grants. Use the Get ready checklist.
Apply for Social Security Disability (SSDI)Say "ALS": it's a Compassionate Allowance with no 5-month wait, and Medicare follows. See Services.
Veterans: file a VA claim for ALSALS is presumptively service connected, usually rated 100%.
Join the National ALS RegistryHelps research and alerts you to studies. cdc.gov/als
Set up advance directives, a health care proxy and power of attorneyEasier to do early, while signing and speaking are easier.

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Before speech changes

Bank your voiceRecord your own voice now so a device can speak in it later. Bridging Voice helps for free.
Get a speech-language evaluation for a communication deviceInsurance approval can take months, so start early.
Try eye-gaze and switch access optionsTeam Gleason can help with technology insurance won't cover.

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Plan ahead

Request a home safety evaluation (OT/PT)Bathroom, entryways, stairs, bed.
Start the power wheelchair process earlyCustom chairs often take 3 to 6 months to arrive.
Borrow equipment from a loan closetChapters lend ramps, lifts, chairs and devices free of charge. See Services.
Apply for home-modification grantsRamps, roll-in showers and doorways. See Grants.

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Monitored at clinic

Track breathing tests (FVC) every visitChanges guide decisions about BiPAP and nighttime support.
Discuss non-invasive ventilation (BiPAP)Often improves sleep, energy and survival.
Talk about a feeding tube before breathing weakensIt's safest to place while breathing is stronger. Keeping weight up matters.

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Throughout

Line up respite careMany chapter grants pay for respite hours. See Grants.
Join a caregiver or family support groupCommunity & connection lists forums and groups.
Find support for children and teensHope Loves Company runs free camps and programs.

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When you're ready

Add palliative care to your teamFocused on comfort and quality of life at any stage. Get Palliative Care
Decide your wishes about invasive ventilationTalk through options with your team and family, and write them down.
Record legacy projects and messagesLetters, videos and voice recordings for the people you love.

A checklist for each stage