“Life with MS has certainly evolved over the past two decades. MS remains a mysterious disease that clearly has an effect on the brain and spinal cord. It is caused by an attack of the immune system, initiated by some unknown stimulus. Its complexity involves genetics and potentially some unidentified infectious agent. We have learned a number of details surrounding these issues, but the heart of the matter remains unknown.

“The MS Nurse is a competent expert who collaborates with those affected by MS. He or she shares knowledge, strength, and hope. As the role of nurses continues to evolve, there is a need to establish a cohesive model of MS nursing practice, along with specific standards in MS nursing care.

“Looking back to the 1980s, the best we could do was to ‘put out fires’ when caring for the person with MS. By this, I mean treating exacerbations with steroids or ACTH and using physical and occupational therapy to minimize disability. In the 1990s, the disease-modifying therapies were introduced. For the first time, we were able to influence the natural course of MS, but we also had to learn how to best use these medications, cope with side effects, and maximize adherence.

“I began my career as a nurse practitioner in MS in 2001. Despite having been through three diagnostic criteria changes, I still consider myself new to the disease, because I have never known a time without disease-modifying therapy (DMT).

“When I first started seeing MS patients in Central Florida 19 years ago, most of the individuals I saw were referred because they needed an assistive device or they were recovering from a significant exacerbation. It was not a climate of being proactive regarding health and fitness when dealing with MS, but merely accommodating to progressive symptoms or functional loss.

“Looking at the evolution of assistive devices and technologies available for people with MS, one has to realize that ‘state of the art’ is always a moving target. At one point, the folding wheelchair was the latest advancement and people could finally take their chair in the car. Since that time, not only have better wheelchairs come along, but we’ve also seen a broadening of the types of products people with MS need and want – their expectations have grown beyond traditional medical equipment.

“Psychological understanding of MS has evolved greatly since the beginning of the 20th century. For many years, cognitive impairment was rarely distinguished from mental symptoms. The relationship between mood, cognition, and disease course were not known. Early efforts relied on psychoanalytic case histories correlated to findings on the Rorschach (inkblot) tests to try to characterize the type of individual who was prone to MS.

“Disability in MS is multifactorial. Lesions can occur in any area of the central nervous system (CNS), and therefore a variety of impairments are possible. Balance loss is common in MS because it occurs not only from myelin loss, but also from a variety of symptoms such as weakness, stiffness, sensory loss, pain, and loss of muscle control. Fatigue is a common MS symptom and can be a major reason for falls and balance loss. Research has shown that people with MS are far more likely to fall when fatigued.

“My first MS patient in 1971 had been in a wheelchair for twelve years (recommended right after diagnosis) when she was referred for treatment of a fractured shoulder from a fall. She was highly motivated, the shoulder recovered well, and she requested further treatment for her MS. There was nothing in the literature at that time, but her doctor and I were willing to give it a try in once-weekly sessions.

“Treatment for individuals with MS has evolved considerably over the years. In occupational therapy, one major advance has been the broad use of computer technology to benefit individuals with MS.