What is US Against MS? United Support Against Multiple Sclerosis is an all volunteer organization dedicated to helping Marylanders with Multiple Sclerosis. When was it founded? Us Against MS was founded in 1985. Is US Against MS the same as the National Multiple Sclerosis Society? No. Although our organizations have similar goals and work concurrently with each other, each organization is independent and has its own unique approach to working with MS patients and their families. US Against MS is not affiliated with any national organization. Why did you start a separate charity? Each of the founding members of US Against MS either has MS or has a family member or close friend who has the disease. Everyone involved in establishing our all volunteer charity wanted to find ways to offer support services, equipment and information to patients and their families on an individual basis.
As a small group focused on providing information and services that would enhance the daily life and activities of MS patients and their families, we realized that funding large scale research projects or developing the political clout to effect legislation would be beyond our scope. Instead, we have concentrated most of our energy on developing programs that complement rather than duplicate those already available in our local community. How does USAMS raise its money? The main source of our fund raising is derived from sales of second hand goods donated in our name to a local thrift store and has been in operation since 1990. In addition, we hold an annual fundraising event which has included a Chesapeake Bay cruise, a fashion show, a celebrity cocktail party, a first run movie with a silent auction. For more information on this year's event, please link to our Fundraising page elsewhere on this site. Also, many people make contributions to USAMS in honor or memory of loved ones.
In 1992, US Against MS established the Kenneth P. Johnson MS Day Program at Montebello Rehabilitation Hospital. We also funded a four bed inpatient unit devoted solely to the treatment of MS patients the first of its kind in the Baltimore area. Subsequently, the Day Program was relocated to the University of Maryland Medical System facility at Kernan Rehabilitation Hospital and operates near capacity four days a week. We also fund the MS Swim Program at the Western Family YMCA in Catonsville, MD. In addition, we provide grants for equipment, services, and home modifications to patients on an individual basis. Currently, we are trying to build an endowment that will fund our programs in perpetuity. How much money do you use to support your programs? Because our officers and Board of Directors are all volunteers and thanks to the generosity of many businesses that donate goods or services, we are able to maximize the efficient utilization of the funds we raise. In a typical year, we will use 98% of the funds we raise to support our programs or help to build our endowment. Please feel free to examine our Financial Statements published elsewhere on this site.
There are many ways you can help USAMS. You can contribute money by mailing it to the address at the bottom of this page. You can contribute your useable second hand goods and clothing to one of our Thrift Stores. You can also Volunteer to help in one of our programs or to become a Board Member. Caring and Active individuals are always welcomed.
Multiple sclerosis, commonly called MS is a chronic, incurable disease of the central nervous system (brain and spinal cord) that is characterized by relapses and remissions of neurological symptoms. For most individuals diagnosed with the disease, it begins with periods of symptoms followed by periods of time that are symptom free, or at least stable. This is often termed relapsing-remitting MS. After approximately 10 years about ˝ of those with relapsing –remitting disease will begin to notice less relapses, and more progression or worsening of symptoms. This is termed secondary-progressive MS. About 10% of patients will present with progressive disease, without attacks or relapses; and without remissions. This is termed primary-progressive MS.
The symptoms of MS vary quite a bit. However, it is common to see visual disturbances such as double vision, or temporary vision loss; impaired coordination; numbness and tingling, weakness, bladder urgency or frequency, and significant fatigue. The most common symptom is fatigue, which affects about 70-80% of all those with MS. What causes MS? The cause of MS is unknown. It is theorized that there is a genetic susceptibility combined with a viral exposure in childhood. Somehow, this causes the immune system to be stimulated to produce inflammation in the central nervous system. The stage set in childhood is then triggered in early adulthood and symptoms of MS appear. Is MS life threatening? MS is rarely life threatening. In the small percentage of people who become severely disabled due to MS and have little mobility there is a greater chance of complications, such as infections, that can be life threatening. At what age is a person most likely to become ill with MS? The age range for MS is wide, from 15-50. In addition, there are a few people diagnosed in childhood, and some over the age of 60. Typically, the diagnosis is made during the 20's and 30's. Do all MS patients wind up in a wheel chair or bedridden? No, all patients with MS do not become wheelchair bound or bedridden. About 10-15% of people with MS become significantly disabled. What is the difference between degenerative MS and exacerbating remitting MS? See #1
MS can be difficult to diagnose. There is no single test that is diagnostic of MS. History, neurological exam, MRI, and sometimes other tests such as a spinal tap make the diagnosis. In addition, the diagnosis of MS requires at least two episodes of neurological symptoms to fulfill the "multiple" of multiple sclerosis. This often requires observation of the individual over time. Sometimes the early symptoms are subtle, and could be attributed to something else.
Pharmacological treatment of MS includes treatment for acute relapses, treatment of symptoms and also treatment of the disease itself. New drugs, called immunomodulating agents have changed the way MS is treated, as they have the ability to change the natural course of the disease. Betaseron, Avonex, and Copaxone, are injectable drugs that are given regularly to reduce the number of relapses and to slow or delay progression of the disease. Betaseron and Avonex are both interferons, specifically, interferon beta. Copaxone is a synthetic agent composed of four different amino acids. Betaseron and Copaxone are given subcutaneously (an injection just below the skin) and Avonex is given intramuscularly (an injection into the muscle). Are any other treatments or therapies available? Relapses of MS are treated with high doses of steroids. These are not the type of steroids that athletes have been know to use, but rather the type that can reduce inflammation very quickly. Steroids are given to hasten recovery from a relapse. They do not offer any long-term benefit, but are useful to reduce symptoms fairly quickly. Although the use of Avonex, Betaseron and Copaxone has had a beneficial effect on the treatment of MS, many individuals still have troublesome symptoms. These are treated using medications as well as rehabilitation techniques. Are there doctors who specialize in the treatment of MS? Yes, there are physicians that specialize in the treatment of multiple sclerosis. In Maryland, there are 6 physicians at the University of Maryland that specialize in research and treatment of multiple sclerosis. Throughout the world there are many centers that specialize in MS care and research.
Local MS organizations such as US Against MS, and The National MS Society have valuable information regarding MS. In addition, there is a Consortium of MS Centers that exists to share information regarding the treatment of MS, and to advance the treatment of the disease. This organization can provide information regarding MS specialists and MS centers in North America. ** US Against MS would like to thank Kathy Costello, RN of the UMMC Maryland Center for Multiple Sclerosis for her assistance in the preparation of answers to the questions in this section.
Occupational therapy
is basically focused on how a patient is "occupied" and OTs are
experts in restoring function in activities of daily living (bathing,
dressing, eating, etc.) as well as adapting a person's environment
to minimize obstacles and maximize ability. Physical therapy frequently
focuses on the functional abilities, including ambulation, balance,
corrective stretching and strengthening, and similar work. In the
care of persons with MS these professions complement and overlap
a lot. A team approach is ideal.... especially when hand function
is impaired. Is either type appropriate for MS patients? If so, is there any time when would one be preferred over the other? In addition to the
comments above, both PT and OT are appropriate for MS patients.
A physical therapist should definitely be consulted if there are
difficulties with ambulation, leg spasms, or back pain, and an OT
consult is advisable if there are problems with upper extremity
function. Both are competent to address wheelchair mobility, transfers,and
related difficulties. Additionally, if a person with MS experiences
difficulty with swallowing or speech, a licensed speech therapist
can perform an evaluation and provide treatment strategies. Yes, there are physical
therapists who have chosen to have MS treatment as a specialty or
subspecialty. These therapists have taken considerable continuing
education to find out more about the disease and effective rehabilitation
approaches. More importantly, they have had experience treating
many persons with MS and are sensitive to the unique nature of the
disease. Are therapists always affiliated with a hospital such as Kernan’s or a program such as the MS Day Program or are there therapists in private practice? Physical therapists work in a variety of settings, including acute general hospitals, outpatient clinics or private practices, inpatient rehabilitation hospitals, skilled nursing facilities, the school system, home health agencies, and even fitness centers. Hopefully a therapist
will consider many factors in determining the course of treatment
for persons with MS. These can include the patient's disease history
(how function has changed since diagnosis, for example), their current
level of function and tolerance for activity are also important
as is setting realistic short and long-term goals. A therapist might
also take into account such practical considerations as transportation,
support at home, and so on. Can all MS patients benefit from physical or occupational therapy regardless of the severity of their symptoms? I'm prejudiced here,
but as a physical therapist, I think that PT and OT have something
to offer every person with MS, even if it is limited to the education
of the patient and family, recommendation of an assistive device
or ambulation aid, or suggestions regarding how to adapt the home
environment. Typically, how often should a patient see a therapist? There is no "typical"
with MS! Everyone's needs are different. However, since people must
deal with MS symptom-management for their whole life, I prefer to
see most of my patients for several weekly or monthly sessions to
develop a home program, then have them return for follow-up as needed.
Can a physical therapist design an exercise program for the patient and caregiver to use on days when the patient doesn’t see the therapist? Yes, as mentioned
above, if the person with MS (with the help or support of family)
is given an appropriate exercise program that addresses functional
goals, the daily home program can be effective especially in reversing
secondary (or "disuse") weakness due to inactivity. Yes,
many persons with MS have had negative experiences by pushing too
hard in an attempt to strengthen weakened limbs. Sometimes this
is the fault of a well-intentioned but uninformed therapist. Other
times the patient is responsible for a "no pain, no gain" mentality,
denying the fatigue with negative consequences. The exhaustion is
usually just temporary, but musculoskeletal injuries can occur that
will interfere with function for a long time. Are the costs of physical therapy generally covered by health insurance? Generally insurance
covers physical therapy but every policy is different regarding
co-pays, deductibles, need for Primary Care Physician (PCP) referral,
and other policy specific requirements. Each person should check
with their insurance company to determine their coverage. The National Multiple
Ssclerosis Society, Maryland Chapter, has a list of some therapists
on file, which will be updated and expanded later this year. The
best way to find out whether the therapist(s) in your area have
experience with MS is to ask them! Recommendations from friends,
members of your support group, or your physician are a good place
to start. ** US Against MS would like to thank Pat Provance of Kernan Hospital for her assistance in the preparation of answers to the questions in this section.
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