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Five Things ALS Caregivers Should Know

Amyotrophic Lateral Sclerosis (ALS), commonly known as Lou Gehrig’s disease, is a progressive neuromuscular disease characterized by a loss of progressive degeneration of motor nerve cells in the brain (upper motor neurons) and spinal cord (lower motor neurons). When the motor neurons can no longer send impulses to the muscles, the muscles begin to waste away (atrophy), causing increased muscle weakness. More than 5,000 patients are diagnosed with ALS in the United States each year, and ALS most commonly impacts people over age 60. Caring for loved ones suffering from ALS can be daunting. Below are some common issues associated with ALS and steps caregivers can take to remedy them.

About half of ALS patients will exhibit some signs of frontotemporal dementia (FTD), a condition that causes patients to have trouble making and following complicated plans, solving complex problems or following a series of directions and making sound judgments.  Caregivers can help minimize the effects of FTD by simplifying tasks, decreasing distractions, maintaining an orderly and organized living space and exhibiting patience.

ALS patients are sometimes at risk for deep vein thrombosis (DVT), a type of blood clot that occurs when people are immobile. These clots are dangerous because they can travel to the lungs, causing a pulmonary embolism. Caregivers can help prevent DVTs by performing range of-motion exercises on the patient and encouraging the patient to wear compression socks or stockings.

Drooling is one of the most common symptoms of ALS. It occurs as the patient has more trouble swallowing excess saliva. This condition can sometimes be remedied by occupational therapy and medication, but there are a few steps caregivers can take to manage the symptom, including securing a folded washcloth or towel below the lower lip, tucking it behind the jaw or fastening it with an elastic band behind the head or tucking rolled gauze between the gum and cheek.

It’s important to keep a list of essential medical information close at hand for other caregivers or emergency and rescue personnel. The list should include the patient’s name, birth date and diagnosis, medications and allergies, insurance information and physician contacts, emergency contacts and any pertinent patient information such as mobility and communication issues and advance directives like a DNR or living will. It’s also important to have an emergency/disaster kit – for example, a backup wheelchair, an adapter kit for the ventilator that will allow it to be charged by the car battery, mobile phone chargers and an additional battery for motorized wheelchairs.

Take care of yourself. Caregiving takes a toll on the body, especially if you are lifting immobile patients.  Using proper lifting techniques or using the assistance of a mechanical lift significantly reduce the risk of injury. It’s also important that the caregiver get regular exercise, particularly core strengthening and exercises that strengthen the legs and back.

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