Unless you’ve been living under a rock this summer, you’ve heard about, or mostly likely have taken the ALS ice bucket challenge. This recent phenomenon has helped raise donations and awareness for ALS across the country. According to the ALS Association, “As of Wednesday, August 27, The ALS Association has received $94.3 million in donations compared to $2.7 million during the same time period last year (July 29 to August 27). These donations have come from existing donors and 2.1 million new donors” (The ALS Association, 2014.) So what is ALS or Lou Gehrig’s Disease and how do I help care for a family member or friend with this disease? Let’s explore these questions further…
ALS or Amyotrophic lateral sclerosis is a “progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord” (The ALS Association, 2014). The body is composed of motor neurons which go from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their deterioration and death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed. Eventually patients may not be able to breathe without assistance.
Knowing that this is a degenerative disease it is important to understanding the progressive nature of the deterioration and recognize the need for hands on assistance. Patients with ALS require assistance with activities of daily living (ADL’s) such as bathing, dressing, toileting, meals and transfers; however the level of care that is required is based on the stage of ALS that the patient is in. Some helpful tips in caring for someone with ALS in the early stages include: using adaptive equipment such as handrails, elevated toilet seats, shower benches, offset eating utensils and clothing aids, such as zipper pulls and button hooks. In the later stages of ALS a patient may need a: wheelchair, ramp, Hoyer lift, hospital bed, and a ventilator. The key to caring for someone with ALS is to fully understand the disease and the stages that a patient will experience. There are many resources available to you to provide education and support while providing care for someone with ALS. Please talk to your doctor or therapist with any concerns about care giving and visit the ALS Association website @ http://www.alsa.org for more information!
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