The daily needs of people with MS--what research can do.When we talk about MS research, most people immediately think about our search to find the cause and the cure. But there are other important research issues. People with MS often face significant obstacles related to everyday living. It is essential that we accumulate data on these problems if we are to influence health policy that improves the lives of people with MS. The Sonya Slifka Longitudinal MS Study--one of four major projects funded by our Promise: 2010 Initiative--is focused on issues that people with MS face in their daily lives. This study, now in its fifth year, has followed a national sample of 2,000 people with MS, using a detailed interview by telephone every six months. Here are some of the questions: How does MS impact employment? What proportion of the MS population is currently working, looking for Looking for In the context of general equities, this describing a buy interest in which a dealer is asked to offer stock, often involving a capital commitment. Antithesis of in touch with. work, or going to school? What reasons do people with MS cite for leaving the labor force? What types of job accommodations do they report needing, and to what extent are they receiving them? To what extent do people with MS encounter discrimination in the workplace? How does MS affect the ways people manage daily living? The Sonya Slifka Study will tell us in detail what limitations people with MS face in their everyday life and the types of assistance they may need in order to perform routine personal activities such as dressing, bathing, eating, moving about, and the like. To what extent do pain, emotional problems, fatigue, and other "silent" symptoms of MS interfere with everyday life? The study will also provide data on the types of equipment or home/work modifications that are most helpful to people with MS. What are the major barriers to quality health care? The study is examining the barriers encountered by people with MS in outpatient care, ER services, inpatient care inpatient care Managed care Services delivered to a Pt who needs physician care for > 24 hrs in a hospital , utilization of prescription medications, and care at home. What types of home help or personal care do people need? What barriers block them from receiving the home help or personal care that they need? Who provides the home help or personal care that they receive? Are there demographic or disease-related factors associated with access to, or use of, various kinds of long-term care long-term care (LTC), n the provision of medical, social, and personal care services on a recurring or continuing basis to persons with chronic physical or mental disorders. ? What does MS cost? The study is tracking costs of MS, including inpatient care, outpatient care, prescription medications, over-the-counter medications, personal care, personal assistance, medical equipment, adaptive equipment Adaptive equipment are devices that are used to assist with completing activities of daily living. Bathing, dressing, grooming, toileting, and feeding are self-care activities that are including in the spectrum of activities of daily living (ADLs). , retraining re·train tr. & intr.v. re·trained, re·train·ing, re·trains To train or undergo training again. re·train , home modifications Home Modification Alterations made to a home to meet the needs of people with physical limitations so they can live independently (to some degree) and safely. Examples of home modifications include removing throw rugs to prevent slips and falls, installing grab bars in the bathroom , automobile modifications, and special transportation. The study is asking what proportion of these costs is covered by the person with MS, the family, insurers, government programs or entitlements, community organizations, or others. What are the major insurance issues? What types of health, life, disability, and long-term care insurance do people with MS have? What is the cost of health insurance, including premiums, co-payments, and co-insurance? What types of restrictions or denials of coverage do people with MS encounter when seeking to purchase insurance? Creating an MS-free world is our number one research priority; we make a tremendous investment in this every year. At the same time, we need to fund research designed to make life with MS as livable liv·a·ble also live·a·ble adj. 1. Suitable to live in; habitable: a livable dwelling. 2. Possible to bear; endurable: livable trials and tribulations. as possible. The Sonya Slifka Study is taking us toward that goal. RELATED ARTICLE: Sonya Slifka and Richard Slifka. In 1948, a young Boston housewife named Sonya Slifka began experiencing disturbing symptoms: unexplained trembling trembling visible muscle tremor caused by fever, fear, weakness, electrolyte imbalance, especially hypocalcemia and hypomagnesemia, and neuromuscular disease. trembling disease , slurred slur tr.v. slurred, slur·ring, slurs 1. To pronounce indistinctly. 2. To talk about disparagingly or insultingly. 3. To pass over lightly or carelessly; treat without due consideration. speech, numbness, weakness. In time, she was diagnosed with MS. As it progressed, she lost more and more abilities--and teenaged Richard, her youngest son, was often the only one at home to be his mother's caregiver. The grown-up grown-up adj. 1. Of, characteristic of, or intended for adults: grown-up movies; a grown-up discussion. 2. Richard Slifka, director and co-owner of Global Petroleum, in Waltham, Massachusetts One of the early centers of the Industrial Revolution in northern America, Waltham is a city in Middlesex County, Massachusetts, United States. The population was 59,226 at the 2000 census. , has been a leadership volunteer for the Central New England New England, name applied to the region comprising six states of the NE United States—Maine, New Hampshire, Vermont, Massachusetts, Rhode Island, and Connecticut. The region is thought to have been so named by Capt. Chapter of the Society for more than 24 years. He's been a national presence as well, serving as a member of the National Board of Directors since 1988 and as the chair from 1998-2001. He has generated more than $4 million in personal donations and solicitations to fight MS. The study named for his mother honors her memory and promises better lives for everyone affected by MS. Dr. John Richert is executive vice president of the Society's Research and Clinical Programs. |
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