Guides
Guides on ALS care
This is the starting point for daily care: talking, moving, eating, breathing, washing, medications, and the planning that comes later. ALS weakens voluntary muscle movement over time, so what the person needs keeps changing. Thinking usually stays intact, which means they can and should help make the decisions. Start with the four things below, then come back for the rest when you need them.
How to use this page
Nobody reads this in one sitting. Open the section that matches the problem in front of you today. Each download is a plain PDF link, and every outside organization is named so you can go to them directly. Nothing here replaces the ALS clinic team.
Start here: the first four things
These four come up first for almost everyone, and each one is easier to sort out early than late. Recognizing what this particular person can still do, and what has already changed, is the whole job.
First
Set up communication early
Speech often changes sooner than families expect. Trying apps and speech-generating devices early means the choice is not made in a rush.
First
Make moving around safe
Clear the walkways, put grab bars where they are needed, and learn a transfer method before you have to do one on your own.
First
Watch eating and swallowing
Swallowing trouble can lead to poor nutrition and dehydration. A dietitian who knows ALS can adjust food consistency before that happens.
First
Learn the signs of breathing trouble
Respiratory muscle weakness is common. Know what fatigue and shortness of breath look like, and keep a respiratory therapist in the loop.
Day to day care
Communication
As ALS progresses, speech gets harder. Adopting other methods early, such as speech-generating devices or apps, keeps the person able to say what they want. Encourage the tools, and stay patient in conversation so they are not rushed.
Our communication resources page lists the tools and services. The ALS Association guide Speaks: Communication and ALS is a PDF you can open or save. The ALS Association is a US nonprofit that funds ALS research and provides care services through a nationwide network of ALS clinics.
Mobility and safety at home
Mobility aids such as wheelchairs or walkers become necessary as ALS progresses. The home has to keep up with them.
- Remove trip hazards and keep pathways clear.
- Install grab bars in the places that matter most, starting with the bathroom.
- Consider a hospital bed for easier positioning and comfort.
- See a physical therapist regularly for exercises that hold on to as much movement as possible.
Our guide to bed mobility and transfer techniques covers the moves themselves. For the building work, there is a useful outside article on ALS home modifications.
Nutrition and eating
Swallowing difficulties can lead to malnutrition and dehydration. A dietitian who specializes in ALS can recommend changes to food consistency and nutritional supplements so intake stays adequate.
- Use thickeners for liquids to reduce the risk of choking.
- Prepare small, nutrient dense meals that are easier to swallow.
- Be patient at mealtimes and let the person eat at their own pace.
See our nutrition and diet page. To find a specialist, the Academy of Nutrition and Dietetics lets you search for a registered dietitian in your area through Find a Nutrition Expert.
Respiratory care
Respiratory muscle weakness is a common complication. Watch for signs of trouble and keep regular appointments with a respiratory therapist.
- Monitor for fatigue or shortness of breath.
- Help with ventilatory support equipment, if it has been prescribed.
- Keep the air moist and clean to make breathing easier.
Read The ALS Association on addressing respiratory changes, and the National Heart, Lung, and Blood Institute on lung diseases.
Personal hygiene and skin care
Staying clean matters for comfort and for preventing infection, but it has to be balanced against how much activity the person can tolerate.
- Use no-rinse soaps and shampoos to keep bathing simple.
- Consider sponge baths to cut down the amount of moving involved.
- Handle gently to avoid discomfort or injury.
The ALS Association article Bath Time: Simple Tips for Safety and Comfort covers no-rinse products and sponge baths. The Qualicare hygiene and skin care PDF is in the downloads below.
Managing medications
The medication list gets more complicated over time. Keeping it accurate and current is the whole battle.
- Use pill organizers and alarms as reminders for medication times.
- Check in with the prescribing team regularly so doses can be adjusted.
The medication guides below offer practical help for patients and caregivers.
Emotional support and mental health
The emotional weight of ALS falls on the person and on you. Support groups and counseling are worth having for both of you.
- Keep talking openly about feelings and fears.
- Look for ALS support groups online or locally.
- Consider professional counseling to work through the harder parts.
Our support network directories list the groups and helplines worth calling first.
Medication guides
These books focus on organizing prescriptions, following medication schedules, and understanding the patient or caregiver’s role. Select a cover to view the book on Amazon.
Guides you can download
Open or save these practical guides whenever you need them.
Planning ahead
Advance care planning matters because ALS is progressive. Talking about care preferences and writing them down early is what makes sure the person’s own wishes are the ones that get followed. Legal tools like healthcare proxies and living wills are how those decisions get recorded.
What a living will is, and why it matters with ALS
A living will is a legal document that sets out your wishes for medical treatment for the time when you can no longer say them yourself. With ALS this carries extra weight, because communication gets harder as the disease progresses.
What you can specify in it
- Use of life support. Do you want to be placed on a ventilator if you can no longer breathe on your own?
- Artificial hydration and nutrition. Do you want fluids and nutrients through a feeding tube?
- Pain management. Do you want aggressive pain management, even if it shortens life expectancy?
Before you write one
- Check your state’s requirements. Living will laws vary by state. Use official government websites or an attorney so the document is valid where you live.
- Think through your values. Be honest with yourself about the care you would and would not want in the later stages.
- Tell the people involved. Talking to family and to your healthcare providers keeps everyone on the same page.
Our life planning page goes further into advance directives and end-of-life decisions. These two books approach the subject from practical and personal perspectives.
Looking after yourself
Caring for someone with ALS is demanding, and caregiver burnout is a real risk. Self care is not selfish, it is what keeps you able to do this at all.
- Take breaks, and ask for respite care when you need it.
- Join a caregiver support group to swap experience and advice with people in the same position.
- Learn the signs of burnout in yourself, and get help when you see them.
These caregiver guides focus on the daily work of supporting someone with ALS at home.
Books about living with ALS
Memoirs, family perspectives, and practical information can all help make ALS feel less isolating. Select a cover to learn more about each book.
Amazon affiliate disclosure
Some book links on this page are Amazon affiliate links. If you buy through one of these links, KnowALS may earn a small commission at no additional cost to you.
Run changes past the care team first
Food consistency and thickeners belong to the dietitian, breathing equipment to the respiratory therapist, exercises to the physical therapist, and medication changes to the prescriber. This page is here so you know what to ask about, not so you make the call alone.
Educational content only, never a substitute for your ALS care team. Knowals.com exists to help people with ALS or MND, their families, and their caregivers, especially where geography, cost, or other barriers limit access to specialist care.