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ALS: Planning Ahead for the Next Change

ALS does not follow one fixed timeline. Planning ahead means choosing the next change that could make care unsafe or make the person harder to understand, then involving the ALS team before the current setup stops working.

Start with one question: What has become harder in the last few weeks?

Bring a short change list to the ALS team

ALS-specialist care should repeatedly review mobility and daily activities, swallowing and nutrition, speech and communication, cough and breathing, social-care needs, caregiver support, and end-of-life needs.1 Before an appointment, write down:

  • what changed
  • when it happens and how often
  • what you have to do differently because of it
  • what feels unsafe or cannot be sustained
  • which device, service, instruction, or contact is missing

Ask who owns the next step and when to follow up if it does not happen.

Communication: create a backup before speech or hand use changes

Ask for speech-language and augmentative and alternative communication assessment early. Clinical guidance calls for timely assessment, communication methods matched to the person, ongoing review, and training for family and caregivers.1

Keep at least one no-power backup, such as an agreed yes/no signal or printed letter board. Make sure regular and backup caregivers know:

  • how the person says yes, no, pain, reposition, and emergency
  • how to charge and operate the main communication device
  • whom to call for troubleshooting
  • how the person will participate in appointments and decisions if speech changes

Mobility and transfers: ask for assessment and hands-on training

If walking, bathing, toileting, positioning, or transfers are changing, name the exact task. Ask PT, OT, the ALS clinic, or a home-assessment professional to watch the task and teach the caregiver. Safe manual handling and the caregiver's willingness and ability belong in the care plan.1

Do not wait for a fall or caregiver injury to say that a transfer is no longer manageable.

Equipment: plan the route, not just the item

For each important device, record:

  1. the task it must solve
  2. the clinician or therapist helping choose it
  3. the insurer, durable-medical-equipment supplier, or funding path
  4. any loan or bridge option while approval is pending
  5. who will train the person and caregivers
  6. the backup if it fails, loses power, or no longer fits the need

ALS United Greater New York's equipment program may loan recommended durable medical equipment and assistive technology without charge, including as a bridge during insurance delays. A healthcare professional may need to help select the item, and inventory, fit, delivery, and approval are not guaranteed.3

Swallowing and breathing: notice, document, and call

Tell the ALS clinical team promptly about new or worsening difficulty eating or drinking, choking, weight change, weak cough, shortness of breath, sleep-related breathing concerns, or problems with respiratory equipment. Ask which team number to use after hours.1

Get urgent help

If the person cannot breathe, is choking, is unresponsive, or is in immediate danger, call 911.

Do not change respiratory settings, feeding plans, medications, or treatment decisions based on this wiki. Those decisions require the person's clinical team.

Caregiver capacity: make the invisible workload visible

ALS caregivers may handle daily personal care, the household, care-plan coordination, insurance, and equipment; some report more than 100 hours of care per week. Lack of training and respite are documented pressure points.2

Tell the care coordinator when lost sleep, pain, work, illness, emotional distress, or lack of a trained backup makes the current plan unsustainable. Respite may require a helper trained for the person's communication, transfers, or equipment, so define what the backup caregiver must know before arranging coverage.4

Make a one-page backup plan

Keep a printed copy where another caregiver or responder can find it. Include:

  • the person's preferred communication method and no-power backup
  • essential positioning, transfer, eating, and equipment instructions supplied by the clinical team
  • medication list and allergies
  • ALS clinic, pharmacy, equipment supplier, utility, and emergency contacts
  • which caregiver is trained for which task
  • battery locations, charging instructions, and a power-outage plan
  • what requires 911 and what should go to the ALS team

ALS United provides preparedness guidance, not direct disaster response. Its recommendations include notifying local responders about disability and equipment needs, testing and charging backup batteries, contacting the electric utility about essential medical equipment, and checking shelter accessibility.5 Utility registration or a backup battery does not guarantee priority restoration or continuous power.

Preserve the person's voice in future decisions

Ask about goals, communication preferences, healthcare decision-makers, emergency wishes, and advance-care planning while the person can participate in the way they prefer. ALS guidance supports earlier planning when communication or decision-making may become harder.1

For local routes, see ALS Support in Greater New York. For the broader caregiving overview, see ALS Caregiving.

  1. Van Damme P, Al-Chalabi A, Andersen PM, et al. “European Academy of Neurology Guideline on the Management of ALS.” Source → ↩↩↩↩↩

  2. National Academies of Sciences, Engineering, and Medicine. “Living with ALS: Supporting Caregivers.” Source → ↩

  3. ALS United Greater New York. “Equipment Loan Program.” Source → ↩

  4. ALS United Greater New York. “Support for Caregivers.” Source → ↩

  5. ALS United Greater New York. “Emergency Preparedness.” Source → ↩