MS and Work Barriers  By J. Lamar Freed, Psy.D.
		J. Lamar Freed, Psy. D.is a Gero-Psychologist  in private practice in the Northern Philadelphia suburbs.   He has been diagnosed with Multiple Sclerosis since 1993
I was surprised to find, when I was first reading up on Multiple Sclerosis (MS), that estimates of the average time from diagnosis to disability was as little as ten years. Hopefully this time will get longer as the use of the MRI results in the earlier diagnosis of MS and the use of the new ABC-R drugs results in the slowed progression of the disease. Nevertheless, even if we stretch this average, it is still misleading because there is a dramatic variation in how the disease progresses for a particular individual.  Some people find that after only a few years they can't work, while others work full time until the normal age for retirement.  The course of this disease is very different for each person and the reasons for why people with MS may not be able to work are as variad as the course of the diesease.
MS, as you remember, is a disease in which the bodies own immune system attacks the sheath protecting the nerves that communicate within the brain as well as from the brain to the rest of the body. Most visibly, people with MS often have trouble with balance and strength. The nerves from the brain don't properly instruct the muscles so that they don't work efficiently or sometimes don't work at all. Less visibly, the nerves that communicate from one part of the brain to other parts of the brain can also be affected. This leads to a variety of cognitive problems, ranging from visual loss to difficulty forming and retrieving memories, to problems processing information. Regardless of where the damage lies, the extra neurological effort required to make an injured brain work often produces debilitating fatigue.
The most obvious reasons people with MS stop working is when reduced physical functioning prevents them from the movements required for work. If you can't lift a wrench, you can't work as a mechanic. If you can't pull yourself into the cab of a truck, you can't drive it. If you can't stand on your feet for eight hours, you can't check groceries. If your hands are shaking, you can't operate a sewing machine. These are simple and direct disabilities and when reasons of this sort are the cause of disability, most people can easily understand.
There are many people with MS who don't work for reasons as obvious as these. But this is not the cause of most MS disabilities. Cognitive difficulties -- problems with thinking -- like difficulties with memory, attention, concentration, processing information, or processing sensory stimulation, can also prevent people from working. All jobs require a certain degree of attention and concentration, as well as reasonably good memory functioning.  It is not only professionals, like lawyers, accountants, or physicians, that depend on their ability to do cognitive tasks throughout the work-day.  Jobs that do not require such extensive training are still cognitively demanding. Truck drivers, nurse aids, crossing guards, airport luggage checkers: all have to focus and maintain their attention and concentration and make important judgments in a reasonable amount of time. MS can interfere significantly with these unseen cognitive functions and can make the performance of one's job duties impossible. When cognitive problems prevent the performance of one's duties, disability is the result.
There are many people with MS who don't work because problems with their thinking. But this, too, does not make up the majority of people with MS who are disabled. The greatest enemy for people with MS who are trying to work is fatigue.
MS fatigue is subtle and very hard to understand for those who haven't experienced it. It is why some people with MS seem energetic and vibrant at one time, and are dragged out and exhausted at others, sometimes with very little time in between. It is why people with MS spend so much time resting and it is the primary reason why many people with MS can't work.
Some people with MS who are disabled would be able to do their jobs on Monday morning after a weekend of rest. They might be able to do the exact same things their former coworkers do. They might be able to juggle multiple tasks, balance complicated checkbooks or even balance a fifty or even 100 lb. box. Yet if they persist in doing these things for any length of time, their abilities may disappear. The cause of this is fatigue. When a brain that is working on a reduced number of connections between neurons (nerve cells) is pressed to work to its maximum, it rapidly runs out of steam. At the cellular level this happens because fewer neurons are responsible for the work that would more naturally be done by a full compliment of neurons and neural networks. Like when a basketball team of five, with no room for substitutions plays a team with ten players with a full substitute rotation, the team with a full compliment has a significant advantage in the game. The short-handed team may be able to play with the other team for a while, but over time the fatigue shows up. If this persists over a whole season, the team is going to fall apart. For someone with MS, this kind of scenario can play out over the course of a week, a day, or even several hours.
This fatigue is the most common cause of MS work disability. For jobs that require manual labor, the connection is easily seen. It is clear that even if a person with MS can start the day tossing around fifty pound bails of hay like they were beads at Mardi Gras, if by noon they are unable to drag a bail a few feet, they are disabled. This happens in all kinds of manual situations. The walking required in a clerical position can cause the same kind of fatigue. Sometimes the wearing out of neural connections does more than simply reduce one's ability to move or balance. It can also cause an increase in numbness, muscle rigidity, spasms and even pain. At times a person with MS can be observed with a widening gait over the course of the day or can be seen lurching from side to side, bumping into walls or even retreating to a wheel chair after a couple of hours of walking and standing.
Fatigue can also influence the thinking or cognitive ability of a person with MS. Many people with MS demonstrate a good ability to think when rested. Indeed, for many years it was thought that MS had no cognitive effect at all. People who got MS were told that it only affected strength, balance and sensation. More recently, evidence has accumulated that demonstrates a sometimes profound cognitive effect. This becomes more pronounced after a period of physical or mental exertion and can lead to significant difficulty with mental work tasks.
When the disease has progressed sufficiently to make an impact on the connections between crucial links between different areas of the brain, wearing down those links can mean a disruption to one's normal ability to make connections, to process information, to form or recover memories, or even to recognize important information in the environment. In short, it is hard to think. And if you can't think, you can't work. Certainly you can't work at anything more than very simple tasks, and you are not likely to be able to work at anything someone is going to be paying you for. Take for example, cleaning the house. In a state of fatigue, someone with MS may not be able to process whether the vacuuming or the dusting comes first, or remember whether it was the upstairs or downstairs toilet that was just cleaned.
Such a state of fatigue can be produced by any number of things, from hard physical work -- like cleaning the house -- or from having to handle multiple sources of sensory stimulation -- like being at a loud party with many people, or going shopping at the Mall. In other words, for many people with MS it doesn't take any unusual cognitive or physical task to produce the kind of fatigue that is sufficiently debilitating to prevent them from adequately performing their job duties.
It is a rare person with MS that has only one symptom. Many times there are problems with balance and strength at the same time that problems with cognition or fatigue are present. In a given person's experience the reasons for disability may be unique.
But regardless of the particular configuration of symptoms, for people with MS, it is important to recognize the effect of the disease on job performance. It is very easy for someone to miss how MS interferes with one's work. If the inability to do a job is attributed to causes other than the disease, one can lose one's claim on the benefits that are available for people who get disabling diseases while on the job. These benefits, even if not permanent, can provide an important financial buffer for someone as they make the necessary adjustments to live with MS.
Equally important, coworkers, friends and families need to recognize that fatigue is not the result of laziness, willfulness, or moral turpitude. It is caused by a very nasty disease. This disease is often disabling. Sometimes the disability is caused by easy-to-see physical restrictions and sometimes the causes of disability are more subtle and insidious.
For each person with MS the course of the disease and many of its specific symptoms will vary significantly. Some people have little cognitive difficulty, but great physical problems. Others have only fatigue as a symptom. Other still have no physical problems or even no problems with fatigue, but may have significant cognitive difficulty. Each person's difficulty with MS relates to the number of lesions as well as the specific location of these lesions in our tremendously complex nervous system. Work disability can, unfortunately, be caused by any one of these things, or any number of them in combination.