A Letter to the Newly Diagnosed

A letter to the newly diagnosed, 9/8/2017

Someone famous has again been quoted as saying “I have MS, MS doesn’t have me.” They lie. MS had me 20 years before my 1993 diagnosis. It ruined hot summer days at the beach in my teens and exhausted me on choir tours in high school and college. It made me fail in outdoor summer jobs, demoralized me when I engaged in sports, loosened my grip on drum sticks during concerts, and turned mild colds into debilitating weeks of painful suffering.   No one understood, least of all me. At times it made me unreasonably grouchy in public places, leaving me humiliated by ill-considered statements I made in groups of people I respected. MS has “had” me all of my life and when people say it doesn’t “have” them I lose respect, for they have not grasped the full level of the challenge of MS, and are, therefore, unqualified to speak about this disease.

I am aware of how fortunate I am, even after this litany of complaints. My diagnosis came at a manageable time — had it come earlier, I might not have attempted a rigorous training program in Clinical Psychology. I might have avoided long hikes and camping vacations. Had it come later, the misunderstood difficulties may have grown to interfere with my professional activities before I learned strategies to compensate. My point is not to complain about the miseries of the illness, but to complain about the false bravado and denial inherent in the chest thumping nature of the “MS doesn’t have me” approach to coping.

That way of coping is fraught with awful consequences down the line. Whatever success I had in managing this illness came from accepting that it formed a formidable barrier that I had to keep in mind at all times. Successes before my diagnosis came hand in hand with social and personal costs, things I falsely attributed to the failings of others or of my own character. After my diagnosis, whatever successes I had came because I learned how to reduce my expectations, and accommodate the strictures of the illness. In this way, MS is not a disease to “beat” on an individual basis (fighting to find a cause and a cure is another thing altogether) but a disease to sneak around, to outwit. It requires me to be a trickster with a dragon, lulling it to sleep so I can steal jewels and bits of gold from under it’s nose. Forgetting that it exists and blasting forward meets with doom. It can’t be defeated. You’ll get burned if you try.

Most of the newly diagnosed will have many years of life, often decades, in which to enjoy satisfying professional activity, enjoyable family life, countless moments where you make memories that will sustain them in their later years. But these things will happen in the company of a monster unique to each individual, one that must be coddled, anticipated, and accommodated.

If you are fortunate, like me, you will have willing and loving companions in this adventure. It is a journey we must take, for its advent and ultimate end, like life for every human on the planet, are not in our control. But we still will have moments of great joy, satisfaction and pleasure. Hang on. This ride is going to be a little rough.

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Neuropsychological testing for MS related cognitive changes

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People with Multiple Sclerosis (MS) sometimes notice that their thinking is not as clear as it once was. Older people sometimes have similar observations. Psychologists have compared these observations to those of younger people and found that when young people forget, they blame it on stress or distraction or too much going on at once. Older people almost always blame their age. Since MS has a reputation for disturbing brain functioning, it is easy to blame the disease for momentary lapses that more accurately may be attributed to distraction, inattention, or normal forgetfulness.  But many times a person with MS does experience cognitive changes. When there is a question about such cognitive changes, neuropsychological testing may be recommended.

Neuropsychological testing is a subcategory of psychological testing in general. Most people have had some form of psychological testing. Tests like the SATs, tests sometimes described as aptitude tests, tests of personality — all of these originally were prepared by psychologists in order to measure aspects of human behavior and experience. Such tests are very popular and have proliferated. Caricatures of these tests are frequently seen on Facebook and in other social media and are used for entertainment.  But for serious reasons and with serious research a large number of tests were constructed in order to measure cognitive difficulties — trouble with the speed, accuracy, and complexity of thought. These have been called neuropsychological tests.

Unlike some other areas of measurement, there is no single neuropsychological test that measures everything that the brain does. For this reason, psychologists who have studied neurological functioning and measurement, known as neuropsychologists, have collected a variety of tests that sample most aspects of human neurology.

These tests are combined and referred to as a battery of tests. Not all neuropsychologists use the same battery. Some psychologists prefer to use the same battery for every patient, reasoning that this will best describe the patient’s neurological status. Other psychologists prefer to select different measures from a large number, choosing these measures according to the specific question or according to how the patient has done on tests administered earlier in the evaluation.  

Regardless of the way any neuropsychologist approaches test selection, each is trying to do the same thing:  to describe the details of how a patient’s brain is functioning. In addition, the neuropsychologist may be seeking a description of deficits and, perhaps even reasons why these deficits exist.  

Equally important are the conclusions drawn and the recommendations made after understanding how a patient performs on various tests. Sometimes a neuropsychologist can be helpful in suggesting ways to compensate or cope with difficulties. Other times he or she can only describe what is going on and confirm the distressing suspicion that nothing can be done to improve it. Drawing conclusions and making recommendations may be helpful in focusing the efforts of the treatment team in a more uniform direction.

For example, I once referred an elderly woman for neuropsychological testing because she was not responding as fast as anticipated after a fall. The neuropsychologist was able to describe a number of subtle, though important, cognitive difficulties and indicated that she would never be able to achieve the level of independence the rest of the treatment team had expected. She also recommended that we send her out of the nursing home and back to her apartment as soon as possible, but to do so with some assistance at certain times of the day. In this way, she could have a better quality of life without facing pressure to perform better than she was able.

Neuropsychological testing may sound frightening or intimidating. Indeed, testing should be taken seriously. But it should be no scarier then any number of tests each of us has undertaken in high school or college. To prepare for these tests we were told to try to get a full night’s rest, eat a good breakfast with a normal amount of coffee or tea, and try to adhere to our normal routines as much as possible. As with some standardized tests, there is nothing that should be studied or practiced in advance. The tests are designed to reflect regular performance on a normal day, so the day should be as normal as possible.

Not everyone with cognitive difficulties will benefit from neuropsychological testing. The testing can be strenuous and, depending on insurance coverage, can be expensive. If someone is in a stable situation, and shifts in cognitive ability are not likely to make much difference in his or her life, knowing the details of the deficits may not be of great value.  But sometimes knowing the status of one’s mental functioning makes a big difference. When this is the case, neuropsychological testing can be extremely valuable.