Multiple Sclerosis (MS) is a chronic and often disabling disease of the central nervous system that affects approximately 400,000 people living in the U.S. MS is most commonly diagnosed in Caucasian women from northern European backgrounds who are between the ages of 18 and 30. People living with MS are employed at a much lower rate than others. Although 95% of people with MS have a history of employment, in surveys of people 5 to 15 years after diagnosis, fewer than 35% are working. There are a number of reasons for this high unem­ployment rate, but it is clear that many people living with MS would prefer to be working and could work productively with fairly minor accommodations in the workplace.

MS is a chronic disease characterized by the progressive destruction of the “white” matter in the nervous system – the myelin sheath that protects the nerves and allows for uninterrupted transmission of nerve impulses. This pro¬gressive demyelinization is initially an inflammatory process that ultimately leads to the destruction of the nerve. The initial inflammation is called an “exac¬erbation” and can often be treated using medications to reduce the residual dam¬age. MS is now thought to be an autoimmune disorder that develops without apparent symptoms earlier in life and for which there is some genetic vulnerabil¬ity. There are new medications and other treatments that seem to be effective in altering the course of the disease for many people living with MS. Researchers believe a cure is on the not-too-distant hori¬zon. It is critical that employers and co-work¬ers understand that MS is not a contagious dis¬ease: it cannot be transmitted to others under any circumstances.

There are three primary courses MS can take. With the "relapsing-remitting" course, people experience "relapses" or "attacks" of symptoms, also called exacerbations. People experience partial or total recovery of function after these exacerbations. This is the most common form of MS in the U.S. For some people, the relapsing-remitting course becomes progressive as they get older - that is, the relapses are less noticeable and the symptoms progress steadily. This is the "secondary progressive" course. A minority of people with MS have the "primary progressive" course in which symptoms progress without remission. Understanding which course MS is taking is critical to designing effective employment accommodations.

It is impossible to predict which symptoms an individual with MS will have, and individu­als may experience symptoms or limitations during an exacerbation that either resolve or are less troubling during remission. Because MS is a disease of the central nervous system, it can cause many kinds of limitations depend­ing on where the “flare” up occurs. The most common limitation people living with MS re­port is fatigue – what people with MS call MS fatigue because it is more profound than the fatigue with which most people are familiar. People can also experience difficulty walk­ing, using their hands, or with vision. Some people have difficulty controlling their blad­ders or bowels. Balance can be affected, as can sensation (e.g., in one’s hands or fingertips). One troubling limitation experienced by some people living with MS is related to cognitive changes, which can include problems with memory, handling multiple tasks, and think­ing and responding quickly. It is important to remember that, because most people liv­ing with MS have relapsing and remitting symptoms, an individual who experiences significant fatigue, vision changes, problems walking, or memory problems one week may have fewer problems once the exacerbation resolves. In many ways, the unpredictability of the disease and the difficulty others have in “seeing” the limitations are as disabling as the limitations themselves. For many, living with MS is living with an invisible disability – a disability that is difficult for the individual him or herself to understand and even more difficult for employers, co-workers, and others to grasp. And yet, when both the individual with MS and others are fully informed, the individual may well be able to continue work­ing productively. Workplace Accommodations for People Living with Multiple Sclerosis

Title I of the Americans with Disabilities Act (ADA) protects qualified individuals with dis­abilities against discrimination on the basis of disability in all terms, conditions, and privi­leges of employment, including recruitment, pre-employment screening, hiring, benefits, promotions, layoff, and termination. The ADA defines disability as a physical or mental im­pairment that substantially limits a major life activity, and it specifically identifies the ability to see and to walk, the performance of manual tasks, and the normal operation of neurologi­cal functions, among other things, as major life activities.

During or immediately after an ex­acerbation, an individual may feel profoundly fatigued most of the time and may need to limit work activities for several weeks. For others, fatigue may be a constant limitation. It is not unusual for individuals to report that their “best times” are in the morning and they become progressively more fatigued dur­ing the day. Modifying the schedule of work activities so that the employee can engage in tasks demanding more physical and cognitive effort in the morning may be useful. sensa­tion, it is more difficult to type accurately and manipulate small objects. Keyboarding can be enhanced by placing Velcro or other tactile stimuli on “location” keys, or by using soft­ware which gives confirmation of keystrokes. Experimenting with different computer point­ing devices such as joysticks may also be useful. Some people will find the voice rec­ognition systems described earlier helpful in reducing the amount of keyboarding required. For assembly work or related tasks, jigs may be designed to hold or guide objects and small parts.

An ergonomic work envi­ronment is a critical first step in the accom­modation process. Ensure that the employee is properly positioned in the seat to minimize pain and fatigue, and that tasks in which the employee must engage are ergonomically po­sitioned. When considering an office setting, this includes not only the keyboard, but also the computer mouse, alternative computer access tools, and monitor height. A number of reasonably priced adjustable workstations are now available that allow the keyboard, mouse, and monitor to be positioned independently. Some employees will find that using voice recognition software such as Dragon Naturally Speaking is helpful. This software allows the employee to dictate text to the computer. With either voice recognition or keyboarding, com­puter use becomes more efficient when routine tasks are automated using macro language. For example, in Microsoft Word, the autotext or auto-correct features may be employed so that the user can substitute a two or three letter combination for blocks of frequently used text. Using compressed keyboards may reduce fatigue and alternative mouse devices may improve access to the computer. An employee can try out a variety of off-the-shelf devices at most well-stocked computer stores. The employee may want to consider keeping some type of power mobility at work, such as a scooter or power chair, to facilitate travel within the workplace. Similar considerations should be made in other work settings as well.

Vision changes are often transitory but vision may deteriorate over time. High quality computer monitors with good contrast provide a good foundation for a computer station. Screen enlargement software and contrast enhancement included as accessibility features in both Microsoft and Mac operating systems. Excellent screen enlargement software, which also "reads" to the user with synthesized speech, is available from vendors such as ZoomText. Closed Circuit TV (CCTV) can be used to enhance the contrast and size of print for employees. Various fixed and moveable lenses can allow people to magnify their work. Accommodating vision changes often requires consultation with a specialist in low vision.

These issues are usually managed by the employee and the employee’s medical team. As an accommoda­tion, the employer may need to provide easy access to the restroom, an opportunity for the employee to change clothes, the opportunity to carefully schedule meals, and perhaps the option to work at home during times when bowel and bladder problems could be more acute.

These issues are usually managed by the employee and the employee’s medical team. As an accommoda­tion, the employer may need to provide easy access to the restroom, an opportunity for the employee to change clothes, the opportunity to carefully schedule meals, and perhaps the option to work at home during times when bowel and bladder problems could be more acute.

The most common workplace accommodation for changes in sensation would be related to loss of sensation in the fingers and hands. This loss of sensa­tion would often be accompanied by a loss of strength. For someone with decreased sensa­tion it is more difficult to type accurately and manipulate small objects. Keyboarding can be enhanced by placing Velcro or other tactile stimuli on “location” keys, or by using soft­ware which gives confirmation of keystrokes. Experimenting with different computer point­ing devices such as joysticks may also be useful. Some people will find the voice rec­ognition systems described earlier helpful in reducing the amount of keyboarding required. For assembly work or related tasks, jigs may be designed to hold or guide objects and small parts.

The idea of requiring accommodation for cognitive changes may be frightening for an employee, but many of these accommodations are quite simple, non-intrusive, and allow the employee to work more effectively. In some cases, these accommodations have been so intuitive and efficient that other employees have asked to have access to them! The accommodations described earlier for fatigue may also be helpful to address cognitive changes since the two are often intertwined. Many people use memory books or computer calendars (e.g., personal digital assistants) to help with memory problems. Some employees email themselves reminders to keep a "to do" list in their in-boxes. Desktop computer programs such as Microsoft Outlook can help manage schedules, "to-do lists, and contact lists. These calendar programs can also be configured to send text messages from calendar entries to text pagers or cell phones that accept text messages. This allows an employee to put reminders into a computer calendar system and have those reminders sent to his or her text pager during the day. Structuring the work tasks to maximize routine, minimize distractions, and to sequence work efforts to reduce the demands of multitasking may be helpful. Employers and employees with MS should begin by completing an analysis of the cognitive demands of the job, including interpersonal demands, before beginning the accommodation process.

When plan­ning accommodations in the workplace for people with MS, it is critical to consider the progression of MS. While the progression of limitations cannot be predicted, it makes sense when planning accommodations for current needs to consider the future as well. Accom­modations should also address episodic ex­acerbations where an employee may require a week of hospitalization or recovery from an exacerbation and perhaps a brief, graduated return to work.

Most people with MS are of working age and either want to continue working or, if not cur­rently at work, return to the workforce. Many people with MS do not have limitations that impact their employment. For those indi­viduals who do have significant MS-related limitations affecting their employment, many can work successfully with reasonable accom­modations that are typically minor in nature. With recent medical advances relating to MS and advances in awareness and technology regarding job accommodations, MS will pres­ent fewer barriers to employment in the near future.