Multiple Sclerosis & ALS
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Home Care for Clients with MS
Home Care for the MS Client
Multiple sclerosis (MS) is a chronic, demyelinating disease affecting approximately 400,000 people in the United States alone. MS is a unique and extremely variable disease, often manifesting “invisible” disabilities and symptoms. In-home caregivers need to know the nuances of MS to provide the care and resources available to this group.
MS is a chronic, demyelinating disease that affects the central nervous system (CNS). The progress, severity, degree of disability, and specific symptoms of MS are unpredictable and may vary greatly from one day to another and from one person to another.
Although believed to be an autoimmune disease, the cause of MS is unknown (Lode et al., 2007). A combination of immunologic, epidemiologic, and genetic factors are thought to contribute to the etiology of MS. Various infectious triggers have been studied, but no clear culprit has been identified. The myelin that surrounds and insulates the nerve fibers in the CNS is the target of the autoimmune attack in MS. The loss of myelin and nerve fibers results in the variety of symptoms that can occur (Randall & Schneider in Halper & Holland, 2002).
MS typically strikes young adults as they begin families and careers. Although young children and older adults can also develop MS, the diagnosis is most commonly made between the ages of 20 and 50. It is estimated that at least 400,000 Americans are living with MS. Women outnumber men by a ratio of at least 2–3:1. MS occurs most commonly in temperate areas that are further from the equator. It is most common in whites of northern European ancestry but can occur in African Americans and Hispanics/Latinos as well. The disease is relatively rare in Asians (Kantarci & Wingerchuk, 2006).
The symptoms of MS are many and varied. According to the National Multiple Sclerosis Society (NMSS, 2009) the most common symptoms of MS include the following:
- Fatigue is the most common symptom of MS and reported by many to be their most disabling symptom.
- Visual problems, a common first symptom of MS, can include optic neuritis (temporary or permanent blurred vision, pain behind the eye, distortion of color).
- Sensory changes including numbness, tingling, itching, and pain.
- Bladder (urgency, frequency, nocturia, incontinence, often accompanied by frequent urinary tract infections) and bowel dysfunction (primarily constipation) that can contribute to social isolation, morbidity, and mortality in MS.
- Mobility issues caused by weakness, spasticity, imbalance, lack of coordination.
- Cognitive dysfunction, which along with fatigue, is the primary reason people with MS leave the workforce prematurely.
- Mood changes, including depression, anxiety, and mood swings, are more common in MS than in other chronic illnesses and are thought to be a symptom of the disease as well as a reaction to it.