Practical things that helped us

A patient lift (also called a hoist) can make transfers safer, calmer, and much less physically demanding for both the person being moved and the caregivers helping them.

A patient lift — also called a hoist — was one of the pieces of equipment we wish we had known about earlier. Before we had one, transfers depended much more on people lifting, holding and repositioning by hand. For us, using a lift made transfers calmer and reduced the physical strain on caregivers.

A lift supports the person in a sling and allows the transfer to happen in a more controlled way. The right model depends on the person, the sling, the type of transfer, the height you need to reach and how much room there is around the bed, chair or bathroom.

We used Invacare Birdie models and had a good experience with them, but that is only our experience, not a recommendation of one particular model. What matters is finding a lift and sling that suit the person and the space.

If rental is available, trying a lift before buying can be very useful. It lets you see whether it fits through doors, manoeuvres around the bed, reaches the places you need and feels comfortable for the person being transferred.

These devices can be expensive. Depending on where you live, it is worth asking about rental, equipment loans or other support before buying one.

Practical notes

• Ask a medical equipment provider, occupational therapist, physiotherapist or care team which type of lift and sling may be appropriate.
• Check that the lift fits around the bed, chair, bathroom, doors and turning areas where you actually need it.
• The sling matters as much as the lift. Size, shape and positioning affect comfort and safety.
• Have someone qualified show caregivers how to use the lift and sling correctly.
• Follow the manufacturer's instructions for the specific model you use.

A medical bed can make daily care easier, safer, and more comfortable: positioning, transfers, hygiene, rest, and caregiver ergonomics all become more manageable.

A medical bed can become very useful as mobility and hands-on care increase.

With a normal bed, sitting up, repositioning, washing, changing clothes, adjusting pillows or transferring can become increasingly difficult for both the person and the caregiver.

Being able to raise the head, change the height and adjust the person's position can make daily care easier and more comfortable. Adjustable height can also reduce the amount of bending and awkward handling caregivers have to do.

For us, knowing about this option earlier would have helped. It is worth discussing before ordinary bed care has already become difficult rather than assuming a medical bed is only for a crisis.

Practical notes

• Check that the bed fits the room and leaves enough space for caregivers to move around it.
• If transfers are needed, think about whether a patient lift can move around the bed.
• The mattress matters too. Ask what type of mattress is appropriate for comfort, pressure management, and the person's condition.
• Adjustable height is very important for caregivers.
• Side rails, if used, should be discussed carefully so they help safety without creating discomfort or risk.

A washable positioning sheet with handles can make it much easier to reposition someone in bed, especially when they slide down during the day or night.

When someone spends a lot of time in bed, they often slide down little by little. After a while, they are no longer positioned comfortably, their head may be too low, their body may be twisted, and caregivers need to move them back up.

Doing that by pulling directly on the person's arms, shoulders, clothes, or body is uncomfortable and can be risky.

A positioning sheet with handles sits under the person and gives caregivers clearer places to grip the sheet while repositioning them. For us, this became one of those simple everyday tools that we used constantly.

Our personal favorite is the cotton, washable version. It feels more comfortable for the person lying on it, and because it can be washed and reused, it works well for daily care. We have three: one on the bed, one clean and ready, and one in the wash.

Practical notes

• A cotton or soft washable version may be more comfortable for daily use.
• Having more than one is useful because they need washing.
• Use it for repositioning in bed, especially when the person has slid down.
• Make sure caregivers understand the correct technique before using it.
• Avoid pulling directly on the person's arms, shoulders, or clothing.

A pillow with a hole for the ear can reduce direct pressure when sleeping on the side. In our experience, it helped reduce bruising and made side sleeping much more comfortable.

People who spend a lot of time lying on one side can develop discomfort, redness, or bruising around the ear. We discovered that a pillow made for people with ear piercings can also be very useful in this situation.

The idea is simple: the pillow has a hole where the ear rests. Instead of the ear being pressed directly against the pillow for hours, the ear sits inside the opening. That can make side sleeping much more comfortable.

In our experience, this helped reduce bruising around the ear and the person reported much better comfort while sleeping on their side.

It is a small comfort item, not a medical device — but it can make a real difference when the person cannot easily change position alone.

Practical notes

• Check that the pillow height is comfortable for the neck.
• Make sure it does not force the head into an awkward angle.
• Check the ear and surrounding skin regularly for redness, bruising, warmth, pain, or skin breakdown.
• This may be especially useful for people who sleep mostly on one side.

A knee pillow can make side sleeping more comfortable by reducing pressure between the knees and helping the legs stay better positioned.

When someone spends a lot of time lying on their side, small positioning details start to matter.

A knee pillow is a simple cushion placed between the legs while sleeping on the side. It can help reduce direct pressure between the knees and make the position feel more stable and comfortable.

It can help with comfort during the night, especially when the person cannot easily adjust their own legs or change position without help.

We see it as part of a wider positioning setup: pillows, supports, mattress choice, repositioning, and caregiver checks all work together. The knee pillow is just one small piece, but it can make side sleeping feel better.

Practical notes

• Make sure it does not force the hips, knees, or ankles into an uncomfortable position.
• Check that the person can tolerate it for long periods.
• If the person cannot move independently, caregivers should still reposition them and check pressure points.
• It may be useful together with other pillows for back, arm, or ankle support.

Washing hair becomes difficult when the person can no longer easily sit, stand, lean over a sink, or shower safely.

An inflatable hair-washing basin is a simple but very practical solution. We position it behind the person's head while they are lying in bed, then use water and shampoo to wash their hair. The basin has a drain, which makes the water easier to collect and empty.

For us, this was more comfortable than relying only on no-water or no-rinse methods. Those can still be useful when a full wash is impractical.

It is a manual process, so it still takes preparation and care. But as a home-care tool, it is very practical and helps preserve comfort, cleanliness, and dignity.

Practical notes

• Prepare towels before starting.
• Check the drain position before adding water.
• Make sure the person's neck and head are comfortably supported.
• Use warm, comfortable water — not too hot.
• Protect the bed, pillow, clothes, and any nearby equipment.
• Keep water away from medical devices, tubes, dressings, and electrical equipment.
• Go slowly and stop if the person becomes tired or uncomfortable.

For daily tracheostomy care, the dressing sits against the skin for long periods and needs to handle secretions comfortably. We preferred pre-cut non-woven dressings, and Metalline was one option that worked particularly well for us.

For tracheostomy care, small differences in dressing material can matter when something sits against the skin every day.

In our experience, some standard gauze dressings shed fibres or stuck more than we liked when removed. Pre-cut non-woven tracheostomy dressings were more practical for us, and that is the main takeaway: use a dressing intended for the job and suited to the person's skin, secretions and care routine.

Later, we tried Metalline. Its low-adherence contact surface made removal more comfortable for us. It cost more, so we would treat it as one option rather than something everyone needs.

If a suitable non-woven tracheostomy dressing is already working well, there may be no reason to change it. What matters is comfort, absorption, keeping the area appropriately dry, and being able to inspect the skin.

Practical notes

• Ask the care team which dressing is appropriate for the person's tracheostomy and skin.
• Use a dressing intended for tracheostomy care and check that the size and shape fit properly.
• Change it according to the care routine you have been given, and sooner if your care guidance says to do so when it becomes wet or soiled.
• Check the surrounding skin for redness, irritation, moisture, wounds, unusual discharge or discomfort.

When someone spends many hours in the same room, the bedroom environment matters more than people realize. A room can become too hot, too cold, too dry, or uncomfortable, and the person may not always be able to explain what feels wrong.

A small thermometer / hygrometer makes the room easier to monitor. It shows the temperature and humidity at a glance, so caregivers can notice changes and adjust the room when needed.

It can be especially useful when the person spends much of the day in one room or has difficulty communicating that the room feels too hot, cold, dry or humid.

Practical notes

• Place it where caregivers can easily see it.
• Keep it near the person's usual room, but not directly in the sun or next to a heater.
• Use it to notice when the room environment has changed; what adjustment is appropriate depends on the person and any equipment being used.
• Choose a simple model with a large, readable display.

A basic reusable writing tablet can be a useful low-cost option when speech is difficult but the person can still write letters or short words by hand.

Before Kalam, this is what we used.

When speech becomes difficult but the person can still write, a simple children's digital writing tablet can be enough for short messages. It is cheap, lightweight, easy to find, and does not need an app, account or internet connection.

The person writes letters or short words on the tablet, then clears the screen and writes again. It can be useful for basic needs, choices, names, short answers, or spelling something the caregiver has not understood.

For us, it worked well while writing was still easy enough. Its limitation is simple: once hand control makes writing slow, tiring or difficult to read, another communication option needs to be ready.

Practical notes

• Make sure the erase button is not too easy to press by accident.
• Attach the stylus so it does not get lost.
• Keep it near the bed or chair.
• Check how the erase function is powered; many models use a small replaceable battery.
• Nothing written on it is saved — if something matters, photograph it before clearing.
• If writing is becoming less reliable, prepare another communication option before you depend on it.

More on communication

• Communication and ALS — the options, and what may fit nowkalam.care

A wireless doorbell can work as an affordable call button when the person can still press a button but can no longer call loudly or speak reliably.

Before thinking about complex systems, a basic wireless doorbell answers one of the first practical problems: how does the person call for help?

The person keeps the button close to them. When they press it, the receiver rings somewhere else in the house. It is simple, affordable, and easy to understand.

We used a long-range model with two receivers and two buttons. That detail mattered. Having more than one receiver means the sound can be heard in different parts of the house, not only in one room. For example, one receiver can be placed near the caregiver's room and another in a living area or kitchen.

This can be especially useful when calling out is no longer reliable but the person can still press the button consistently.

It is not an emergency system, but as a simple day-to-day call button it can be very useful.

Practical notes

• Test the range inside your actual home, with doors and walls closed.
• Put receivers in more than one place if possible.
• Check batteries regularly.
• Keep the button attached or positioned so it does not fall out of reach.
• Consider having more than one button: for example, one near the bed and one near a chair.

For families in France, ARSLA is one of the first places worth knowing about.

Its services include help with administrative and social questions, an equipment-loan service, and exceptional financial assistance in qualifying situations.

The equipment service can be particularly useful when something is needed quickly, while other funding or equipment arrangements are still being organised.

Practical notes

• Contact them before a situation becomes urgent if you already know support or equipment may be needed.
• Ask specifically about equipment loans if you are waiting for equipment or struggling to obtain it.
• Their social-support service can also help with benefits, administrative processes and identifying other support available in France.

ENCALS maintains a directory of ALS centres across Europe. It is a practical starting point when you need to identify a specialist centre rather than searching hospital by hospital.

Practical notes

• Coverage varies by country.
• Use it when you are looking for specialist ALS input, a centre to contact, or a second opinion.

Team Gleason works at the practical edge of ALS care: assistive technology, communication, mobility, voice and message banking, and home automation.

Their technology and equipment programs are well known among US ALS families. If you need help understanding what AAC, eye gaze, or home automation could look like for the person you support, this is a good starting point.

Practical notes

• US-based programs. Eligibility and processes may differ in other countries.
• Worth knowing about even from outside the US — their public materials about AAC and communication setup are informative.

Les Turner is a useful example of very practical local ALS support: coordinators who help families navigate needs, equipment loans, assistive-technology support, respite assistance and transportation or other grants.

Its programs are geographically and clinically focused. If you are in the Chicago area, check the eligibility rules for the specific service you need; some services are tied to specific clinics or care arrangements.

Practical notes

• Primarily relevant to people using ALS services in the Chicago area.
• Check eligibility for the individual program before relying on a grant or service.
• If you are eligible, contact the support-services team rather than waiting until the need becomes urgent.

The main advantage is specificity. A question about a lift, communication setup, positioning or daily care can reach people who have already dealt with it. Some groups are broad; others are for patients only, caregivers, spouses or a particular need. Treat what you read as peer experience, not medical guidance.

Practical notes

• Start with the I AM ALS Facebook-groups directory. For local or non-English groups, also search Facebook using ALS, MND or the local name of the disease together with your country or language.
• Many groups are private. That hides posts from the public; it does not make them confidential from the other members.
• Be cautious with unsolicited private messages, especially treatment or cure offers or requests for money, medical records or ID.

Reddit can be where families say the quiet part out loud — the fears, the burnout, the practical problems nobody else discusses. That is its value.

It is not a medically reviewed source. People may share treatment claims, supplements, off-label drugs or alternative therapies alongside useful lived experience. Treat those claims as anecdotes rather than evidence.

Practical notes

• Useful for emotional reality, caregiver perspective, and practical equipment or daily-life questions.
• For treatment claims or medical decisions, use a reliable evidence source rather than relying on a Reddit post.

The value here is lived experience: what other people tried, what daily care looked like, and the practical problems that do not always appear in formal guides.

Search is usually more useful than browsing because the archive is large and uneven. Both older posts and new discussions should be read as personal experience, not verified medical guidance.

Practical notes

• Treat all treatment claims as anecdote, not evidence.
• Most useful for practical experience: equipment, caregiving routines, communication, mobility, daily life.
• English-only, mostly US-based contributors.