News of any disease can be traumatic, but an ALS diagnosis is especially so. The disease throws patients into a new way of life, one in which each moment is precious. While the experience is sure to be overwhelming, there are steps patients can take to make the process easier on their loved ones and themselves.
What Is ALS?
Amyotrophic Lateral Sclerosis is a degenerative disease that is known for its gradual paralysis. Also called motor neuron disease or Lou Gehrig’s disease, ALS slowly destroys the brain’s ability to communicate with the muscles of the body as the motor neurons that extend from the brain to the spinal cord to the muscles slowly die.
Without normal stimulation, voluntary movement is restricted and the muscles begin to atrophy or waste away, slowly stealing patients’ abilities to talk, walk, eat, and eventually breathe. The nerve cells that signal and control the muscles are located in the lateral region of the spine, and this area scars and hardens as the disease progresses. Unfortunately, there is currently no cure for ALS.
Steps Can Patients Take After Receiving a Diagnosis
An ALS diagnosis can make patients feel helpless. But there are many things patients can do to take charge of the rest of their lives.
Educate Yourself About Your ALS Diagnosis
Uncertainty equates to fear, and learning more about ALS and its progression is the first step in gaining peace about an ALS diagnosis. Research the disease and the methods used to make a diagnosis easier. Seek out those who are further along than you and listen to the practical advice they offer. If you join a support group, you can also help and comfort those who are not so far along.
ALS is a scary disease. There comes a point in every patient’s path when the physical pain and emotional strain grow too heavy to bear alone. Please remember that you do not have to. Accept and ask for other’s help, and do not be afraid to be honest when people ask how you are faring.
Establish Financial and Legal Plans
ALS patients will not always have the ability to advocate for themselves about financial, legal, or medical decisions. Plans should be put in place early after an ALS diagnosis so patients can play an active role choosing how their property is handled and what kind of medical treatment they receive.
An incapacity plan gives patients the ability to authorize someone they trust to make important financial and health care decisions for them. This person may be a close friend or family member, a spouse or adult child.
An estate plan designates someone the patient trusts to hold durable power of attorney. This appointee manages the patient’s legal and financial affairs within the limits set by the patient. An ALS diagnosis is a good catalyst for updating an estate plan if there is already one in place.
A living will outlines the patient’s preferences concerning end-of-life care. This legal document describes the patient’s views on life-prolonging treatments, including life support and CPR. ALS patients should entrust their care to medical teams that will honor their treatment preferences.
Plan for Extended Care
Eventually, extended care becomes a necessity for ALS patients. Consider the different kinds of long-term care available so you can plan logistically, legally, and financially to receive the best treatment possible as you cope with the disease.
For patients without someone at home to provide sufficient care, an assisted living center can be a wonderful place to get the treatment they need. This long-term living arrangement is for patients who cannot live independently but do not yet need medical care around the clock. Assisted living is usually only a temporary care solution for ALS patients.
Similar to an assisted living facility, a nursing home provides consistent care for residents. The care offered is more dedicated and structured than an assisted living facility. Nurses in a nursing home have proper protocols for treating ALS patients so nothing gets missed. When deciding on a facility, look for one with the proper equipment and staff with experience with ALS.
Hospice focuses more on providing compassionate support and companionship during the last months of a patient’s life than on treatments that will prolong it. Care includes managing basic hygiene, administering medication, and attending to minor medical treatments in addition to offering counseling and support for the patient’s family. Hospice can be administered either at the patient’s home or in a medical facility like a hospital or nursing home.
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