Losing control of your body is probably the scariest part of living with amyotrophic lateral sclerosis, or ALS. This progressive disease destroys the motor neurons which power your body’s voluntary movements and muscle control. Over time, little by little, someone with ALS loses control of all functions. It takes away their ability to speak, eat, move and breathe.
Take control with supportive care
Taking control of how to live with their disease is why ALS patients should seek supportive care as soon as they know they have it. Also known as palliative care, supportive care is not hospice care. It is a medical specialty with a team that works with your primary care physician, neurologist and other specialists to help you manage symptoms.
Supportive care is by your side as you walk the journey of this rare and often rapid debilitating illness. As a nurse practitioner, I work with my care team and ALS patients to help manage pain like muscle cramps and nerve tingling. I also offer therapies and medicine to help you maintain as much function and strength as long as possible.
Helping the caregivers
ALS doesn’t only affect a patient. It affects their loved ones, too. We help caregivers learn to feed, assist in physical therapy, and provide other help with daily activities. Caregivers can call us to ask questions. They have someone who will encourage them, give guidance and help them to know they are doing it right. Our social worker can connect caregivers with community resources like support groups or access to funds or resources.
Caregivers can call us to ask questions. They have someone who will encourage them, give guidance and help them to know they are doing it right.
The goals of care often change over the journey with ALS. As a nurse practitioner, I help families keep their advance directives and MOLSTs, or medical orders of life-sustaining treatments, up to date as the illness progresses. We guard the quality of life by being honest. We build a trust with the patient and family by having frequent conversations as new symptoms develop. Patients and families can better decide what will help them meet their overall goals when we’re realistic about what to expect from this the disease.
We’re there for the long haul
This is a rare disease that has no cure, but research specialists around the world are making new discoveries all the time. Supportive care is on the side of aggressively treating and participating in efforts to find a cure. We’re here for the long haul to give you the support you need for both quality and quantity of life.