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MS Self Help Group |
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"Nationwide, three people are
newly
Lincoln County MS Support Group
THE INLAND NORTHWEST HAS THE
SECOND HIGHEST INCIDENCE The Lincoln County Multiple Sclerosis Support Group meets the last Wednesday of each month. The site alternates between Creston and Davenport and all are invited to contact Dawn Hollis-Glick at (509) 725-1030 for times and locations. You can also call the Regional MS Society Office at 1-800-FIGHTMS and ask for Stacie Davis. The Support group not only meets to discuss MS-related issues and treatments, but brings in nationally and regionally-known speakers and physicians to give pertinent information to those battling this disease.
Who gets MS? Anyone may develop MS, but there are some patterns. Twice as many women as men have MS. Studies indicate that genetic factors make certain individuals more susceptible than others, but there is no evidence that MS is directly inherited. It occurs more commonly among people with northern European ancestry, but people of African, Asian and Hispanic backgrounds are not immune. What are typical symptoms of MS? Symptoms of MS are unpredictable and vary from person to person and from time to time in the same person. For example: one person may experience abnormal fatigue, while another may have severe vision problems. A person with MS could have loss of balance and muscle coordination making walking difficult; another person with MS could have slurred speech, tremors, stiffness and bladder problems. Even severe symptoms may disappear completely and the person will regain lost functions. In severe MS, people have partial or complete paralysis on a permanent basis. What causes these symptoms? MS symptoms result when inflammation and breakdown affect myelin - the protective fibers of the central nervous system (the brain and spinal cord). Myelin is destroyed and replaced by scars of hardened "sclerotic" tissue. These are called plaques and they appear in multiple places within the central nervous system. Myelin is often compared to insulating material around an electrical wire: when the insulating material is broken down, the wires fray causing problems with the transmission of electricity. Thus, loss of myelin interferes with the transmission of nerve signals. Some underlying nerve fibers are permanently severed in association with the loss of myelin. Is MS fatal? No. MS is not considered a fatal disease. While in very rare cases MS is malignantly progressive, most people who have MS have a normal or near-normal life expectancy. Does MS always cause paralysis? No. Moreover, the majority of people with MS do not become severely disabled. Two-thirds of people who have MS remain able to walk, though most will need an aid, such as a cane or crutches, and some will use a scooter or wheelchair to help fight fatigue, weakness and balance problems. Can MS be cured? Not yet. There are now FDA-approved medications that have been shown to modify or slow down the underlying course of MS. In addition, many therapeutic and technological advances are helping people manage symptoms and lead productive lives. Advances in treating and understanding MS are made every year and progress in research to find a cure is very encouraging - even exciting! Why is MS so difficult to diagnose? In early MS, symptoms that might indicate ay number of possible disorders come and go. Some people have symptoms that are very difficult for physicians to interpret, and these people must "wait and see." While no single laboratory test is yet available to prove or rule out MS, MRI or Magnetic Resonance Imaging is a great help in reaching a definitive diagnosis. What are the different types of MS? In an effort to develop a common language for evaluating and researching MS, the Society conducted an international survey among scientists who specialize in MS research and patient care. Analysis of responses resulted in the following definitions of disease categories, which were introduced in 1996. 1. Relapsing-Remitting Characteristics: People with this type of disease experience clearly defined flare-ups (also called relapses, episodes or exacerbations). These are episodes of acute worsening of neurologic function. They are followed by partial or complete recovery periods (remissions) free of disease progression. Frequency: Most common form of MS at time of initial diagnosis - approximately 75%. 2. Primary Progressive Characteristics: People with this type of MS experience a slow but nearly continuous worsening of their disease from the onset, with no district relapses or remissions. However, there are variations in rates of progression over time, occasional plateaus and temporary minor improvements. Frequency: relatively rare -- approximately 15%. 3. Secondary-Progressive Characteristics: People with this type of MS experience an initial period of relapsing-remitting disease (above) followed by a steady worsening disease course with or without occasional flare-ups, minor recoveries (remissions), or plateaus. Frequency: 50% of people with relapsing-remitting MS developed this form of the disease within 10 years of their initial diagnosis, before introduction of the "disease-modifying" drugs. Long-term data is not yet available to demonstrate if this is significantly delayed by treatment. 4. Progressive-Relapsing Characteristics: People with this type of MS experience a steadily worsening disease from the onset but also have clear acute flare-ups (relapses), with or without recovery. In contrast with relapsing-remitting MS, the periods between relapses are characterized by continuing disease progression. Frequency: relatively rare - approximately 10%. How many people have MS? Approximately one third of a million Americans acknowledge having MS, and every week about 200 people are diagnosed. Worldwide, MS may affect 2.5 million people. Because it is not contagious, which would require U.S. physicians to report new cases, and because symptoms can be completely invisible, the numbers are estimated. Many do not report their disease, which has a devastating affect on funding. Why register my MS with the National MS Society? To be blunt, in the United States, medical research dollars are divided up between diseases. The more people who suffer from a particular disease, the more money that area of research is given. Currently, MS research receives only 42 cents of the total medical research money pie. If the real numbers for those who suffer from MS were known, that rate would likely be $8. Why don't many people with MS register? That's a deeply personal question with equally personal answers. Val Vissia, a local spokesperson for MS and MS sufferer herself, says many newly diagnosed with the disease don't want anyone to know. Some fear for their jobs as employers may consider them "ticking time-bombs" wasting away. Others do not want pity, and since most symptoms are easily hidden, they can continue a normal looking life - at least for the time being. Still, others are in denial. Vissia says she's seen a number of people who "grin and bear" the burden of MS in silence. "It used to be when you were diagnosed with MS, it was like a death sentence. There was nothing that could be done. That is not true today. There are so many treatments that slow down this disease and make life easier. Slowing down the progression is the key while researchers look for a cure," she says. "Not all treatments work for all MS sufferers, but each person has to try what they think is best. Most of us seeking drug or even dietary therapies have found at the very least temporary relief from symptoms, and at the most, a slowing of the disease's progression through fewer flare-ups. Taking control of this disease has been good for me. I couldn't manage any other way. Research and the dollars to fund it, are crucial to my future and yours." An easy way to register is to follow the steps on the Consortium of Multiple Sclerosis Centers website at www.mscare.org. The National Multiple Sclerosis Society recommends treatment with one of the FDA-approved "disease-modifying" drugs as soon as possible after the diagnosis of a relapsing form (the most common kind) of MS. These drugs help to lessen the frequency and severity of MS attacks, reduce the accumulation of lesions (areas of damage) in the brain, and slow the progression of disability. The FDA has also approved another disease-modifying treatment for reducing disability and/or the frequency of relapses in patients with secondary-progressive, progressive-relapsing or rapidly worsening relapsing-remitting MS. This is the first therapy approved in the U.S. for these types of MS. The lifetime dose is limited due to cardiac toxicity. In addition to these "disease-modifying" drugs, there are many therapies for symptoms such as spasticity, pain, bladder problems, fatigue, sexual dysfunction, weakness and cognitive problems. People should consult a knowledgeable physician to develop a comprehensive approach to managing their MS. MS changes your whole life – not just your health. People with chronic illness often find lack of access to public and private buildings, or have difficulty with insurance and employment issues, including inadequate financial help to stay on the job, unmet needs in Social Security programs, lack of employment and social services, inadequate health insurance and lack of knowledge on legal rights regarding job-related issues. This doesn’t have to happen. Through the efforts of the National Multiple Sclerosis Society chapters, their volunteer advocates and the home office, we’ve seen funding for MS related research at the National Institutes of Health almost double over the last five years. Some states have implemented programs to provide prescription drug coverage for low-income individuals with disabilities, while others have increased funding for home and community-based long term care services. These are services and programs people with MS need, including better access to public and private places and opportunities for Medicaid recipients to return to work without losing their health coverage. Federal Advocacy The NMSS Advocacy Programs Department carries the primary responsibility for federal advocacy. This department conducts legislative and regulatory research on pending issues, monitors the progress of important bills and proposes regulations, sets priorities, develops positions and advocacy strategies. They then communicate with the chapters and trigger an advocacy campaign to support of oppose various matters. The Society also participates in judicial branch advocacy by signing on to amicus curiae – “friend of the court” – briefs on behalf of people with MS. The home office collaborates with chapters on local judicial matters. State Advocacy At the state level, the chapters carry the primary responsibility for legislative and executive branch advocacy activity through their Government Relations Committees (GRC). The Society’s Advocacy Programs Department functions as a resource to chapters, providing information on issues including model bills and model provisions that affect MS sufferers. Local Advocacy Local efforts are often directed toward issues such as accessibility to private and public buildings, health care coverage and long term care. The local MS Self Help Group discusses many of these issues and brainstorms ways to solve problems on a grassroots level. How can you help? The key to advocacy is educating policy makers about how decisions they make will affect you and your family members. People with MS and their families can be particularly persuasive in communicating their needs, as they speak with firsthand knowledge of the trials of MS. Volunteer to be on your MS chapters GRC by calling 1-800-FIGHT MS, or sign up to be on the society’s Action Alert Network. Go to www.nationalmssociety.org then select “Advocacy” at the top of the page and click on “Join Action Alert.” You will receive legislative updates and special alerts when the Society needs to generate support on a specific issue. Let’s make our voices heard – together, we can make a difference to improve the daily lives and well-being of people with MS. Local MS Support Group coordinator Val Vissia says reading all she can about MS-related issues, disease management and promising treatments has given her strength and peace of mind in fighting this disease. Here are her top picks for information:
Contacts in the Lincoln County area
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