ALS: where to start

ALS can suddenly give you a long list of things to think about. You do not need to deal with everything at once.

If you are not sure where to begin, here are some areas that may help you get oriented. What matters most depends on the person and their situation.

New to ALS? If you want a plain explanation of the disease first — what it is, where it can begin, and how it can change over time — start there. What is ALS?

Some things to understand

Know who you can call

The neurologist remains the specialist for ALS-specific decisions. But many problems that come up day to day — an infection, pain, sleep, medication questions or something new at home — can start with a general doctor.

If you have a choice, previous experience caring for people with ALS can be useful. A doctor who has seen some of these problems before may recognise them more readily and know when another specialist needs to be involved.

Home visits can also matter when travel becomes difficult. Other specialists can then be brought in as particular needs appear — breathing, swallowing, movement, equipment.

Find ALS organisations and care centres

Understand the treatment options

A small number of medicines are approved specifically for ALS. None of them cures or stops the disease, and the benefit they offer is limited.

Riluzole is the most widely available. Other treatments exist only in certain countries, or only for certain people with ALS.

For any treatment, ask what it may realistically do and whether you can actually obtain it. A medicine can be approved and still be out of reach — because of cost, reimbursement, supply, or where and how it is given.

Genetic testing can matter because some treatments apply only to particular genetic forms of ALS. Tofersen (Qalsody), for example, is a treatment for ALS caused by certain mutations in the SOD1 gene. SOD1-associated ALS accounts for about two in a hundred ALS cases. Tofersen requires repeated lumbar punctures at a centre equipped to give it, and availability and cost vary considerably from one country to another.

Ask whether genetic testing is available in your case, and what would change if the result were positive.

See approved ALS medicines and where they are available

Follow breathing changes

Breathing changes can take a family by surprise. The muscles used to breathe can weaken gradually, and at first it may not feel like a breathing problem at all: sleep that no longer refreshes, headaches in the morning, unusual tiredness during the day, breathlessness when lying flat, or a cough that has lost its force.

This is why breathing is followed over time rather than only when it feels wrong. Ask how it will be checked, how often, and which changes to report between appointments.

If breathing does weaken, non-invasive ventilation can support it. It delivers air through a mask, often at night at first, and can improve sleep and daytime energy.

Later, some people consider a tracheostomy and invasive ventilation. The decision depends on the person's medical situation, circumstances and preferences.

A respiratory crisis can leave little time to consider these choices, so it can help to discuss them beforehand.

Decisions about future care

Protect nutrition and weight

Eating can become slower and more tiring, and swallowing can become more difficult. Meals may take longer, some foods may be avoided, and fluid intake can fall without it being obvious.

Getting enough food and fluids matters. Weight loss, dehydration and loss of strength or energy can create additional problems on top of ALS.

Changes to notice include unintended weight loss, meals becoming very long or exhausting, coughing or choking with food or drink, and difficulty drinking enough.

A dietitian or a professional experienced in swallowing can help with food textures, positioning and practical ways to make eating and drinking easier and safer.

If getting enough food, fluids or medicines becomes difficult, a feeding tube (gastrostomy) may become one of the options. It can supplement what is taken by mouth and does not necessarily mean stopping eating. Nutrition, breathing and general health can affect when and how a feeding tube is placed.

Have another way to communicate

A backup way to communicate can be very simple. Agree on a clear yes/no signal, keep a printed letter or needs board within reach, or use a communication tool on a phone or tablet.

Try whichever method you choose in ordinary situations so that both the person and the people around them know how it works. More specialised communication equipment is another option when simple methods are no longer enough.

If preserving your own voice matters to you, voice banking is an option to consider while speech is still clear.

Backup communication

Practical arrangements and preferences

ALS also brings practical problems: paperwork, money, equipment, transport and organising help at home.

There is more to care than treatment

There is currently no treatment that cures ALS. But good care can still make a real difference to daily life.

Breathing support, nutrition, movement, communication, comfort, nursing, emotional support and adaptations at home all affect how the days actually go.

Often the improvement that matters most is very concrete: a better position in bed, a way to call someone from another room, the right piece of equipment, an easier way to say something, one recurring problem at home finally solved, or real help for whoever is doing the caring.

Care matters. A lot — for comfort, dignity and connection.

Who can help with what?

Different problems call for different expertise, and the professionals available will depend on where you live.

If these professionals are not available where you live, start with the neurologist or the doctor you can reach and explain the specific problem you are trying to solve.

Before trying a treatment you find online

With ALS you will quickly come across treatment claims — from well-meaning friends, online, and sometimes from clinics charging a great deal of money. Three questions do most of the work.

Is it approved for ALS — and where?

Approval is granted by a medicines regulator, for a particular use, country by country. Something approved elsewhere may not be approved, or available, where you are.

Is it being formally studied in a clinical trial?

A trial means it is still being studied. That is not the same as knowing it works.

If neither, what evidence is actually behind the claim?

Promotion and testimonials are not evidence. A personal story can be completely genuine without showing that the treatment caused the improvement.

Before spending significant money, travelling for treatment, or changing prescribed care, check the claim independently and discuss it with a clinician familiar with ALS.

Search a treatment on ALSUntangled

Where do you want to go next?

Kalam is not a medical service. This page is practical orientation based on lived experience of ALS care and established ALS guidance; medical decisions should be discussed with the clinicians involved in your care.