Planning ahead with ALS

When you’re diagnosed with ALS, there are some decisions that can be helpful to understand early. 

Most decisions can wait until you’re ready, but for some, the range of options may narrow as the disease progresses. Learning about these options early doesn’t commit you to any particular choice. It gives you time to understand what’s available, talk with your care team, and make de

What can planning for life with ALS involve?

Voice banking

If there’s a chance you’ll want a computer-generated voice later that sounds like you, the recordings for it need to happen while your speech is still clear. This process is called voice banking: you record a set of sample phrases, and software uses them to build a synthetic voice that can later “speak” anything you type.

You don’t need any special equipment to get started, and a speech-language pathologist can walk you through it. If your speech has already begun to change, it’s still worth asking, as some methods can work with limited or imperfect recordings. 

Nutrition support

ALS can weaken the muscles used for chewing and swallowing, which makes eating slower, more tiring, and eventually harder to do safely. A feeding tube, most often a PEG tube (percutaneous endoscopic gastrostomy), delivers nutrition, fluids, and medication directly to the stomach.

Timing matters here. Placing the tube is a minor procedure, but it involves sedation, so it becomes more complicated once breathing has weakened. Because of this, doctors generally suggest thinking about it before weight loss or swallowing problems become severe, rather than waiting. Ask your neurologist or pulmonologist how your breathing test results affect timing, and what your options are if your breathing has already changed. 

Two things people often misunderstand about feeding tubes:

1. You don’t have to stop eating by mouth. Many people keep eating foods they enjoy and use the tube to fill in the gaps.
2. It’s not permanent. If you decide later you don’t want it, you can have it removed. 

Breathing support

Breathing muscles weaken over time with ALS, and there are two very different kinds of support available. They are often discussed together, but they lead to very different experiences. 

Noninvasive ventilation (BiPAP): This involves using a mask over the nose or mouth, usually starting at night. No surgery is needed, and you can start or stop it whenever you choose. It’s linked to a better quality of life and, in studies, longer survival. Most people start here.

Tracheostomy with invasive ventilation: This involves a small surgical opening in the windpipe connected to a ventilator. For some people, it can extend life by years. It also requires round-the-clock skilled care, significant equipment, and substantial cost. Insurance coverage for the in-home care it requires varies widely and is often incomplete. Some people choose this path and find it meaningful. Others decide it isn’t right for them. Both are entirely valid choices.

This is the decision we most encourage people to think through in advance. A breathing crisis can develop suddenly. If you arrive at an emergency room without your wishes documented, doctors who don’t know you may default to a tracheostomy simply because there’s no other guidance to go on. Deciding in advance and putting it in writing keeps the decision yours.

One more important point: these decisions are not permanent. Someone who chooses ventilation can later decide to discontinue it, with support from a palliative care or hospice team to ensure comfort throughout.

Making future decisions now

Planning ahead

Planning ahead can make things easier for you and the people who love you, not just medically, but in the everyday sense of feeling prepared instead of caught off guard. This usually includes organizing legal and financial matters, documenting your wishes for future care, choosing people you trust to make decisions on your behalf, and simply talking with the people close to you about what matters most. 

You don’t need to make every decision at once, and plans can change over time. The resources in this section are designed to help you understand your options, know what questions to ask, and take steps when the time feels right for you and your family.

Creating healthcare documents

A social worker or other healthcare professional can help you:

• Establish an advance directive (or living will), which records your wishes about ventilation, feeding tubes, resuscitation, and similar decisions.
• Name a healthcare proxy (or durable power of attorney for healthcare), the person authorized to make medical decisions for you if you can’t.
• Fill out a POLST or MOLST form (name depends on your state), a medical order signed by a doctor. Unlike an advance directive, emergency responders act on this one directly.

Organizing legal and financial Documents

It’s worth talking to an attorney who specializes in estate planning or elder law for organizing the following measures and documents:

• Durable power of attorney for finances — lets someone manage money matters on your behalf if needed.
• Will (and a trust, if it fits your situation).
• Updated beneficiary designations on retirement accounts and life insurance — these pass to the named person automatically, outside of what your will says.
• Guardianship arrangements for minor children, if applicable.
• A record of accounts, passwords, and digital access for whoever will need it.

A note on palliative care

Palliative care focuses on symptom relief, comfort, and quality of life. 

It can begin at any stage of ALS and is provided alongside all other treatment, including treatment aimed at slowing the disease. It is not the same as hospice care, and beginning palliative care does not mean anything about how much time you have. Many people find that involving a palliative care team early improves day-to-day life considerably.