Last week, I attended the National Multiple Sclerosis Society’s 2007 National Conference in beautiful, breezy Dallas, TX. Nearly 1,200 people registered. They included staffs, volunteers, researchers, sponsors, advocates and more than 20 exhibitors.
The conference’s theme of Moving Forward Together was appropriate and dominated the conference. The theme has a variety of meanings. One meaning is finding a cure to rid the world of multiple sclerosis. MS is thought to be an autoimmune disease that affects the central nervous system (CNS). The CNS consists of the brain, spinal cord, and the optic nerves. Surrounding and protecting the nerve fibers of the CNS is a fatty tissue called myelin, which helps nerve fibers conduct electrical pulses.
In MS, myelin is lost in multiple areas, leaving scar tissue called sclerosis. These damaged areas are also known as plaques or lesions. Sometimes the nerve fiber itself is damaged or broken. Myelin not only protects nerve fibers, but makes their job possible. When myelin or the nerve fiber is destroyed or damaged, the ability of the nerves to conduct electrical impulses to and from the brain is disrupted, and this produces the various symptoms of MS. The National Multiple Sclerosis Society estimates that more than 400,000 people in the United States have MS. More women than men have 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 might 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. While some symptoms will come and go over the course of the disease, others may be more lasting.
All of the score of people I spoke to were fascinated by the recent initiatives by the National Multiple Sclerosis Society to expand the awareness of the benefits of assistive to people living with MS.
Staci Barfield, director of Corporate Relations, NMSS Eastern North Carolina Chapter, said, “I am overwhelmed by the leadership in the AT field that I see here by our national office.”
To assist people with MS add to their quality of life, Bayer HealthCare Pharmaceuticals, Microsoft Corp., and the NMSS launched the MS Technology Collaborative to increase knowledge of how people with MS use technology and to connect them to information and resources to help move their lives forward and to manage their MS.
The Collaborative has launched the following initiatives:
MyMSMyWay.com. This is a robust online portal that provides the MS community with existing resources and information, including a monthly column on accessible technology, and the opportunity to allow users to submit their own tips. Users can register on-site to receive periodic updates on the project.
Landmark Survey on the role that technology plays in the lives of people living with MS.
Snapshot is a personalized interactive web-based program for people living with MS. The Snapshot quiz asks five questions and provides information and options to help improve day-to-day life and resources about accessible and assistive technology, treatment and staying connected.
Located on MyMSMyWay.com., Snapshot is the MS Technology Collaborative’s flagship deliverable and combines key elements from each of the Collaborative participants.
MS staff, volunteers and advocates told me they were ecstatic to see a variety of assistive technology products on the market and to try these products personally.
“I am impressed by the variety of these products and how helpful they can be to people with MS, like me,” Tom Chappell told me.
Jamie L. Mayo, MSE, ATP, RET, Rehabilitation Senior Engineer, Rehabilitation Engineering Program, Physical Medicine & Rehabilitation attracted crowds as she demonstrated the AT products mentioned above.
“It’s delightful to see the expressions on their faces as they discover these liberating technologies,” Mayo says with a heart warming smile.