How long have you had MS?
I was diagnosed in April 1982. In retrospect, I believe the first signs of MS appeared in January 1980.
When did you first have MS-related cognitive symptoms?
In 1980, I was working and also completing part-time graduate studies in New York City. As I lived approximately 160 miles from the university, I had to travel for eight hours a day on top of work and lectures.
The travelling, lack of rest and the 19-hour day did not become a factor until January 1980, when I was in the last year of the course and shortly to graduate. It was then that I began experiencing pronounced fatigue and an inability to study and absorb the content of the material read.
When they began, were you aware that cognitive problems were part of MS?
For a long time, I didn’t suspect that these problems were even related to MS. I thought it was just a case of getting older.
Much later in 1999, when I was working at the MS Society, a client had asked whether treatment for his cognitive symptoms would be covered under his health insurance policy. Whilst researching the answer, I realised these symptoms were certainly MS-related and that I too could be suffering from MS-related cognitive dysfunction. I now have no doubt this is the case.
Can you describe the cognitive difficulties you experience?
In addition to memory loss, I have difficulty in paying attention to complex lectures and concentrating on work requiring professional skill. I also find it problematic to remember names, appointments, errands to be completed and that appropriate word needed to finish a sentence.
Have your cognitive difficulties changed over time?
I had the good fortune to be seen by a psychologist who specialises in treating MS-related cognitive impairment. Our sessions included, among other exercises: the need and way to take proper notes; the correct method for reading material to establish its central theme; and directing my thoughts on a single task, not multiple ones.
How do your cognitive difficulties impact on your lifestyle?
Before I became aware that my symptoms were related to cognitive dysfunction and there were techniques to manage them, I thought, at times, my conversations with people made little sense. I was also convinced that my IQ had dropped dramatically and that my ability to understand complex ideas was questionable.
I now know that: this condition is treatable; my IQ is unchanged; my worry about not clearly conveying my thoughts during a conversation was wrong; and that I was much too critical of my abilities. Yes, I have a problem, but I have learned how to live with it.
Did healthcare professionals provide support to help you learn techniques to manage your cognitive difficulties?
The treatment by the therapist taught me ways to overcome problems related to this impairment. I realise now not to rely on my memory, regardless of the simplicity of the task. I understand the necessity of taking good notes, resting when it’s needed, and not being too critical of my abilities.
What advice do you have for others who may be experiencing cognitive difficulties?
In addition to the above techniques, I have learned the need to exercise the mind. In my case, I find it important to read extensively.
I enjoy writing on varied topics, both factual and fictional. Since I have a passionate interest in history and politics, I relish a good debate in both areas. I have a close friend whose politics are a bit to the right of Attila the Hun. I enjoy our discussions when I have the opportunity to challenge his opinion, whether it relates to health care in the United States or his thoughts on this year’s political races.
I also find it useful to search the Internet, regardless of the subject, and to play as much Scrabble as humanly possible. These are simply methods of exercising the brain and strengthening the thought process.
It is equally essential to limit one’s distraction as much as possible. At work this includes not sharing my work space, confining myself to a small cubicle of an office and closing the office door when necessary.
‘I have learned the need to exercise the mind. In my case, I find it important to read extensively. I enjoy writing on varied topics, both factual and fictional’
Steve Cooper at work
‘My IQ is unchanged; my worry about not clearly conveying my thoughts during a conversation was wrong; and I was much too critical of my abilities.’
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