http://www.zwire.com/site/news.cfm?newsid=2310306&BRD=1904&PAG=461&dept_id=127458&rfi=6

September 05, 2001
Staff

They make a great team. One was diagnosed with multiple sclerosis long ago; the other only had a name for her symptoms a year ago.

One is verbal; the other carries detailed files for explanation. One is a nurse and understands the value of nurturing. The other is a tax agent who stresses planning and research.

They are both optimists.

If you have MS and live in Fauquier County, these are two women you are going to want to know.

Nancy Lagasse of Amissville and Karen Rutherford of Rixeyville met at an MS event earlier this year, and knew immediately that they wanted to serve the community together by creating a local MS support group. They in turn found a perfect partner in the National Multiple Sclerosis Society, which offers extensive services to MS patients, including help in running support groups.

Multiple sclerosis is an autoimmune disease of the central nervous system that is generally diagnosed between the ages of 20 and 40. Symptoms range from mild numbness to paralysis, but its progress is unpredictable and unique to each individual.

Although it is not completely understood, MS is not contagious. A range of treatments exists to relieve symptoms and slow its progress.

This potentially devastating disease strikes one person out of a thousand, although it is more common among women and those raised in temperate regions. Estimates vary, but between 250,000 and 350,000 Americans have been diagnosed with MS.

NMSS offers a range of services to MS patients and is active in supporting groups like the one Lagasse and Rutherford will kick off Sept. 22 at Fauquier Hospital.

"They (the NMSS) are the best organization of this type for any disease that I know of," said Lagasse.

A nurse for a local medical practice, she knows what she is talking about. Until a year ago, Lagasse was primarily a caregiver giving referrals to support groups. Now she is a patient, looking for services and support herself.

Because few of the symptoms of MS are visible to casual observers, and because the sometimes disabling symptoms are often misdiagnosed, its sufferers can feel alone and misunderstood. In addition, because MS has no definite prognosis, patients themselves can feel confused and out of control.

Many patients find their doctors unable to answer all their questions.

"There is a process of grieving," Lagasse said.

"And denial," added Rutherford. "I was a basket case at first. I knew nothing about it until I started networking."

Rutherford, in the years since her diagnosis, has armed herself with what she considers her most powerful weapon against MS: information. Although running this support group will mean more work and an unaccustomed public role, the soft-spoken woman believes in the value of support groups and the importance of bringing the comprehensive services of the NMSS to the local level.

NMSS, based in New York, has local chapters throughout the country; the closest is in Charlottesville. Support group meetings are held in both Manassas and Fredericksburg, but this group is the first of its kind in the Fauquier-Culpeper area.

With the sponsorship of Fauquier and Culpeper Hospitals as well as the Blue Ridge chapter of NMSS, the Fauquier group will hold monthly meetings alternating between the two hospitals.

Lagasse and Rutherford will facilitate the informal meetings, which are offered free of charge. Speakers from the medical community and non-traditional practitioners as well as those with services for MS patients will be invited to speak before each meeting.

"We won't be having a heavy meeting every month," Lagasse said. "This is a safe place to come and make friends with people who understand."

Although she has had a great deal of support from friends and family, Lagasse knows that sometimes patients need a different kind of ear.

"Friends want you to call, but not always with bad news," she said.

Privacy is a priority for MS support groups. Many people with MS are reluctant, even afraid, to share their diagnosis. In a small community such as Fauquier, sensitivity is even more critical.

At a recent NMSS training session the two leaders were trained in the rules of confidentiality mandated by the national group. Even support group leaders are not allowed access to the NMSS database of members. Lagasse and Rutherford will maintain a private mailing list of attendees to meetings, but emphasize that no one should feel pressured to sign in.

"There are job issues and family issues to think of," said Lagasse.

She has only recently begun letting acquaintances and friends know about her diagnosis. "You don't want to be defined by your illness. I am also a mother, a wife, a nurse ..."

For the kick-off meeting, representatives from both the National and Blue Ridge NMSS will be there to assist. Representatives from the three pharmaceutical companies that sell injectable therapies for MS will also attend.

September's meeting will be followed by monthly meetings on the fourth Saturday of every month from 10 a.m. until 11:30 a.m. Each session will feature a speaker, a question-and-answer period, and an informal meeting.

The co-leaders have been pleased with public response to their plans. A local business has offered food for events and several businesses supported Lagasse on her first MS Walk earlier this year.

"NMSS has so much to offer," Rutherford said. "From educational materials, emotional support forums, equipment lending, legal guidance, to help with work and disability issues.

"Sometimes just having someone to listen to you air your feelings can be a great relief. Education comes not just from reading research and from doctors, but also from interacting with others with the same chronic illness you have."

Rutherford believes in the power of knowledge to regain control of life with MS. "We need to get beyond it, and be able to move on," she said.

"It is a complex illness," Lagasse agreed. "But there is always comfort in numbers."
 

• What: "There is Power in Knowledge" kick-off meeting of the new MS support group of Fauquier-Culpeper counties
• When: 10 a.m. until 12 p.m. Saturday, Sept. 22
• Where: Fauquier Hospital
• Speaker: Dr. Larry L. Stephenson on "MS from a Neurologist's Standpoint."