When I contemplate my multiple sclerosis (MS) practice, I am impressed that people with MS never ask for help in preventing their T cells from attacking the myelin of their central nervous system. Rather, they ask for help in improving their ability to function. Often, they ask for help in moving about. Frequently they ask if anything can be done to help them remember things better or feel less tired or depressed. When asked, they often want help with bladder function, even though they may not volunteer it initially.
Thus, people with MS desire rehabilitative care. Of course, they also want medicines to reduce exacerbations and prevent their disease from progressing. But it is improvement in function that is the major plea.
Yet rehabilitation has been slow in coming to MS care. Although now a focus of organisations such as Rehabilitation In Multiple Sclerosis (RIMS) in Europe and the Consortium of Multiple Sclerosis Centers (CMSC) in the United States, this international effort is little over 15 years old. One of the major reasons for the delay in the application of rehabilitative care to MS is that the founder of the field of rehabilitation medicine was reputed to have taught that rehabilitation for people with MS was essentially a waste of time and money; people with MS would progress in their disability, and all the effort would be for naught. Effort should be spent on more “static” disabilities such as spinal cord injury and amputations.
Prior to the establishment of RIMS and the CMSC, there was a handful of pioneering comprehensive MS centres in the United States. The National MS Society (NMSS) was instrumental in this effort, and in 1977 it approached the University of Washington to establish a comprehensive MS centre in Seattle. Other pioneering comprehensive centres at that time also existed in New York, Minneapolis, Denver and Switzerland.
The comprehensive care of people with MS has become more sophisticated over the years. Initially, around the time of the founding of the Washington centre, comprehensive care of MS consisted of improving ambulation (using canes, braces, or wheelchairs) and, possibly, bladder and bowel function. This was the concept of “comprehensive” MS care in the 1970s, a period that I call Phase I.
Phase II occurred in the 1980s and 1990s with the development of a greater appreciation of the many other systems affected by MS. It was during this phase that comprehensive MS care also began to include attention to the management of fatigue, depression, cognitive impairment and vocational matters, among others. The appreciation of deficits in these and other areas was followed by more sensitive means of measuring them and improved approaches to management. Rehabilitation of people with MS had come a long way.
However, I suggest that we are now entering a third phase: Phase III of comprehensive MS care. As we learn more about the inner workings of the thinking processes of people with MS using qualitative interview techniques, and more about compensatory brain function through functional magnetic resonance imaging (fMRI) studies, we are becoming aware of the intense effort put forth by people with MS to function as well as they do and the role of brain plasticity in allowing this to occur. Previously discrete regions of brain activity become spatially arranged more diffusely – a necessity, as MS lesions destroy old neuronal pathways. This may account for the difficulty in multi-tasking often seen early in the disease process. Consequently, we are now suspicious that isolated system testing – whether in the motor or cognitive sphere – may not give a completely accurate assessment of function in the real world in which some degree of multitasking is a prerequisite for success. I believe that we are scratching the surface in our understanding of this at present.
This issue of MS in focus discusses rehabilitation of people with MS. The classical fields of physical and occupational therapy are reviewed, as is speech and swallowing therapy and counselling. I am also pleased to see a discussion of vocational issues, as this area of rehabilitation is often overlooked, but can often be one of the earliest casualties due to the difficulty the MS person has with multi-tasking. It has been known for years that employment rates for people with MS are lower than what would be expected. It may be that it is in the vocational sphere that all of the deficits come together, and some measure of vocational performance may be a better single indicator of the severity of MS than is the widely used Expanded Disability Status Scale (EDSS).
Rehabilitation is what people with MS want. This issue provides a concise update.
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