After you have received the diagnosis, your neurologist will schedule your first clinic visit. If you do not live near an ALS clinic or cannot attend one, contact your ALS United Greater Chicago Care Services Coordinator to ask if they can recommend a local neurologist who specializes in ALS or other medical professionals who can help.

If attending an ALS clinic is not possible, ask your primary care doctor or neurologist if they can either monitor your respiratory numbers or recommend a respiratory therapist who can do so. Once you qualify for a certain respiratory device, your doctor or neurologist will order the device through a local durable medical equipment company.

If any respiratory issues or concerns arise between visits, contact your medical team to ask questions or schedule a separate appointment.

Respiratory Equipment

Respiratory equipment is therapy for your respiratory system. It can help you sleep better, have more energy, and experience a better quality of life. Studies have shown that using respiratory equipment on a regular basis can help you live longer. Starting early can help you get used to the devices and begin feeling better sooner.

Most respiratory equipment is noninvasive, which means you can take the mask or interface on and off whenever you wish. If you get a tracheotomy at a later stage in the disease, however, you will become dependent on a mechanical ventilator to breathe for you 24/7.

Breathing Exercises for ALS

There are some daily breathing exercises that you can do early in the disease to help you open and expand your lungs, breathe more easily, and have a stronger cough.

“Breath stacking” involves taking a series of short breaths on top of each other without exhaling. After holding your breath for a few seconds, you fully exhale all at once. With expiratory and inspiratory muscle training, you use a small, handheld device to inhale and exhale against a resistance level that is set and adjusted according to your breathing test measurements. Other helpful breathing techniques include huffing and deep diaphragmatic breathing.

Ask your ALS respiratory therapist, pulmonologist, or neurologist about breathing exercises that might help you. 

Improving Your Sleep

Getting a good night’s sleep is important for your health, well-being, and energy level. If you are finding it hard to get a solid night’s sleep, or are finding it harder to breathe when lying down, it may help to prop yourself up with pillows or a bed wedge. If you are still not getting the rest you need, it may be time to get a bilevel (BiPAP) machine or use a portable ventilator in bilevel mode to assist you with breathing while sleeping. This should improve your quality of sleep and help you feel more rested when you wake up.

Shortness of Breath

If you are experiencing shortness of breath, it is likely the result of a weakened diaphragm muscle. This makes it harder to expand the lungs enough to fully receive oxygen and fully exhale carbon dioxide. Typically, a bilevel (BiPAP) machine or a portable ventilator will help. Most people living with ALS do not need supplemental oxygen. The exception is when your oxygen levels drop below normal levels, which is usually from an underlying lung condition such as COPD or emphysema.

If you develop sudden shortness of breath, it is important to seek immediate medical attention, as the cause could be something other than ALS, such as a blood clot in the lungs.