Resources

For families in France, ARSLA is one of the first places we would point to.

Their services page lists concrete help: social support, equipment loans, exceptional financial assistance, and contact through their equipment team for urgent or transitional needs.

What we like about ARSLA: they are more than just a donation button. The organization exists to actually respond to families who reach out.

Practical notes

• Contact them early, not only when you are in crisis.
• Their equipment service can help with loans during transitions or while you wait for personal equipment.
• Useful for families and caregivers in France, not just for patients.

ENCALS lists ALS centers across Europe with clinical and research activity. The list is one of the cleanest ways to find a specialized center when you do not already have one.

Practical notes

• Coverage varies by country. Larger countries have more centers.
• Worth seeking out even if your current care is fine — second opinions in ALS can matter.

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.

Geographically limited, but worth knowing about as an example of how an ALS organization can structure real, practical help — not only research and donation campaigns.

Their grant programs include equipment loans, transportation grants, and support-services grants. If you live in their service area, contact them early.

Practical notes

• Primarily serves the Chicago region.
• Useful as a model when you ask yourself "what should an ALS organization actually offer my family?"

Families facing ALS will encounter treatment claims constantly — sometimes from well-meaning friends, sometimes from clinics charging large sums of money. Sorting hope from hype is exhausting, and it is not a job Kalam takes on.

ALSUntangled reviews specific claims — mechanism, preclinical evidence, case reports, trials, and risks — with input from clinicians and scientists across many countries. If something is being marketed to your family, it may already have been reviewed there.

Our own practice, when we look into a potential treatment: read about the mechanism, check for interactions with medications already in use, then ask doctors — often more than one — before anything is given to the person we support. A natural compound can still be unsafe in combination with a prescribed drug.

Practical notes

• Be careful with any treatment that is expensive out-of-pocket, sold as a cure, supported only by anecdotes, hidden from mainstream medicine, or asks you to distrust your doctors.
• Check ALSUntangled before spending money or taking risks.
• Always involve the care team. Always consider interactions with current medications.

"MND" (motor neurone disease) is the UK term for ALS. The MND Association's AAC page explains the range of communication-support options practically — and notes that introducing AAC early helps maintain communication, independence, and involvement in decision-making.

Kalam is one simple tool inside this larger AAC world. It is not the whole picture, and understanding the wider landscape early helps families make better choices later.

Practical notes

• Worth reading early — before AAC becomes urgent.
• Even outside the UK, the overview applies broadly.

Before Kalam, this is what we used.

When speech becomes difficult but the person can still use their hands, a simple children's digital writing tablet can be enough. It is cheap, lightweight, easy to find, and does not require setup, charging complexity, internet, accounts, or apps.

The person writes letters or short words on the tablet, then clears the screen and writes again.

It is very simple — and that is the point.

At this stage, the goal is not advanced communication. The goal is to keep communication possible with as little friction as possible. A small writing tablet can help with basic needs, choices, names, short answers, or spelling something the caregiver does not understand.

For us, it worked well before hand control became too difficult and before we needed something like Kalam.

It is not useful forever. As finger control declines, writing becomes slower, harder to read, and more tiring. But during the stage where writing is still possible, this little tool can be a very good bridge.

Practical notes

• Choose a large enough screen for readable letters.
• Make sure the erase button is not too easy to press by accident.
• Attach a stylus so it does not get lost.
• Keep it near the bed or chair.
• It works best for short messages, names, letters, and yes/no clarification.
• When writing becomes too difficult, consider moving toward touch, switch, or scanning-based communication.

When speech becomes weak, unreliable, or lost, one of the first practical problems is simple: how does the person call for help?

Before thinking about complex systems, a basic wireless doorbell can be extremely useful.

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 is especially useful when the person has lost speech but still has enough hand or finger movement to press a button.

It is not a full emergency system, but as a daily call-for-help tool, it can be incredibly helpful.

Practical notes

• Choose a button that is easy for the person to press.
• 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.

When you need to know what other families actually did — not what a brochure recommends — old forums like ALS.net are useful. Search rather than browse: the archive is large and uneven.

ALS TDI provides access to the forum archives and new discussions, but notes that they no longer actively monitor or moderate content. Read accordingly.

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.

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 also unmoderated medically. Some users will share treatment claims, supplements, off-label drug stacks, or alternative therapies. These are anecdotes, not evidence — and they can be dangerous if treated as guidance.

Practical notes

• Use for emotional reality, caregiver perspective, and practical equipment / daily-life questions.
• Do not treat treatment claims as medical advice. Always involve the care team.

A medical bed is one of the clearest recommendations we can make.

When mobility declines, a normal bed quickly becomes difficult. Sitting up, lying down, repositioning, washing, changing clothes, adjusting pillows, transferring, or helping the person breathe more comfortably can all become harder than they need to be.

A medical bed changes that.

Being able to raise the head, adjust the height, and position the person more easily makes daily care much more manageable. It helps the person rest more comfortably, and it helps caregivers work at a safer height instead of constantly bending, pulling, or lifting from awkward positions.

In our opinion, this is something families should know about earlier. Many people wait until care becomes very difficult before considering a medical bed. But having it earlier can make the transition easier for everyone.

It is not only about comfort. It is about making everyday care possible with less stress, less improvisation, and less physical strain.

Practical notes

• Ask about renting before buying. Many medical equipment providers rent medical beds.
• 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 patient lift — also called a hoist — is one of those tools we wish someone had told us about earlier.

Before using one, transfers depended entirely on people lifting, holding, adjusting, and repositioning the person by hand. Even with love and care, that can become stressful, uncomfortable, and physically risky — for the person being moved and for the caregivers helping every day.

For us, the patient lift changed everything.

It made transfers much more comfortable for the person, because the movement is more stable and controlled than being manually manipulated by several people. It also made life easier for caregivers, reducing the physical strain and the risk of bad positioning, sudden effort, shoulder pain, tendinitis, or injury from repeated handling.

We use the Birdie range from Invacare. What we especially like is the design with multiple hook points for the sling, which gives a more secure and balanced feeling during transfers. We first rented the Birdie 180 for a week from a specialized medical equipment provider — the same way families often rent a medical bed before deciding whether to buy. We had not even known this type of product existed before trying it.

After that week, we bought one. It was a real investment, but we have had zero regrets.

The Birdie 180 is the one we loved most. It feels spacious, stable, and gives more lifting height, which can make transfers easier in many situations. We currently use the Birdie 150, which is also excellent and more adapted to smaller spaces. The tradeoff is that it is smaller and does not lift as high as the 180, but it still does the job very well.

If you can access one, we strongly recommend trying a patient lift before buying. Renting for a few days or a week can help you understand whether it fits your home, your transfer needs, and the comfort of the person using it.

This is not a small purchase, and not everyone can afford it. But for families who can rent one, borrow one, or buy one, it can be life-changing.

Practical notes

• Ask a medical equipment provider, occupational therapist, physiotherapist, or care team which model and sling are appropriate.
• Try renting before buying if that option exists near you.
• Make sure the device fits your space, especially around the bed, bathroom, doors, and turning areas.
• The sling matters as much as the lift itself. Comfort and sizing are important.
• Always follow the manufacturer's instructions and have someone show you how to use it safely.
• Some Birdie models may have been replaced by newer versions (for example, the Birdie EVO range). Ask your local provider what is currently available.

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 helps solve that problem.

It sits under the person and gives caregivers proper grip points to reposition them more smoothly. 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.

This is not the kind of product people talk about often, but it makes a real difference in daily caregiving.

Practical notes

• Look for a version with strong, well-placed handles.
• 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.

This is one of those simple products that does not look important at first — until you need it.

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 not an expensive medical device. It is a small comfort item. But sometimes small comfort items make a real difference, especially when the person cannot easily change position alone.

Practical notes

• Look for a pillow with a soft surface and a hole large enough for the ear.
• 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.

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.

This is not a dramatic product, but it is a useful one. 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

• Choose a soft but supportive pillow that stays in place between the knees.
• 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.

This is a small, inexpensive item, but it can be useful every day.

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.

We use it as a simple comfort check. It does not solve anything by itself, but it helps make the environment more visible.

It is especially useful when the person has difficulty communicating discomfort, spends a lot of time in bed, or has respiratory sensitivity.

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 changes, not as a medical device.
• It can help decide when to ventilate, humidify, cool, or warm the room.
• Choose a simple model with a large, readable display.

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 the medical bed, then use water and shampoo to wash the hair properly. The basin has a drain, so the water can be emptied more easily.

For us, this was much better than relying only on no-water or no-rinse methods. Those can be useful sometimes, but washing with real water and shampoo feels cleaner and more comfortable.

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 tracheostomy care, small differences in materials matter a lot.

At first, many people think a compress is just a compress. But around a tracheostomy, comfort, absorption, skin contact, and easy removal all matter.

In our experience, classic gauze compresses were not ideal. Small fibers or bits of lint could stay stuck to the patient, and the compress could stick to the skin when removed. Standard non-woven compresses were better, but still not our favorite.

Metalline tracheostomy compresses were the best option we found.

They are more expensive, but for us they were worth it. The comfort was better, absorption was excellent, removal was much easier, and the shape covered the area well. The 8 × 9 cm format worked very well for us.

This is one of those products where the difference is obvious in daily care. It may seem like a small thing, but when something touches the skin all day, every day, quality matters.

Practical notes

• Ask the care team which compresses or dressings are appropriate.
• Check the size and shape around the tracheostomy.
• Replace according to the care routine given by professionals.
• Watch the skin for redness, irritation, moisture, wounds, odor, or discomfort.
• Comfort, absorption, and easy removal are important in daily use.
• More expensive does not always mean necessary, but in our experience this was worth the price.