For people living with ALS, one of the most common fears is losing control: control over your body, and control over your life. Palliative care can help you keep as much control as possible, supporting you and your family to maintain your quality of life.
Palliative care is specialized medical care for people living with serious illnesses like ALS. It focuses on treating the pain, symptoms and stress of illness, giving you and your family an added layer of support. It is provided by a team of palliative care doctors, nurses, and other specialists who will work together with you, your neurologist and other doctors to manage your symptoms and help you make important decisions as your disease progresses. You can get palliative care at any age and at any stage of your illness, and when you’re facing ALS, it’s best to get it as early as possible.
But what does this all mean in practice? If you have just received your diagnosis, your palliative care team can help you fully understand your disease and its likely course, as well as the interventions that can manage your symptoms, such as pain from muscle spasms or cramps, numbness, or the feeling of burning in the lower limbs. The team can also make sure you maintain your function and strength for as long as possible. Trouble chewing or swallowing can be a significant problem for a person with ALS, for example, and caregivers may need help to learn different ways to handle meals.
Over time and as your symptoms develop, your palliative care team will have regular, in-depth conversations with you about what’s important to you and your family. They will also help you fully explore and understand the pros and cons of different treatment choices like feeding tubes, breathing machines, and hydration. The goal is always to make sure your care matches your goals and with what you want. Whatever can be controlled, will be controlled.
If you or someone you love needs palliative care, don’t wait to ask for a referral. Early involvement of palliative care can give you the added layer of support to help you and your family enjoy the best possible quality of life.
Almost all large hospitals have palliative care teams, and it’s also available in outpatient clinics and for home visits, depending on your area. You can visit GetPalliativeCare.org to learn more, look for palliative care in the Provider Directory, and take a short quiz to see whether you might need palliative care.