MS and the Mind
The Devil of Denial
by Karen J. Zielinski
MS-related cognitive problems can be hard to detect and even harder to admit. Denial can be a real devil for people with MS, their friends, family members, and their employers.
“Oh my gosh, I lost my car keys!” Maureen panicked. Then she realized that she’d given them to her friend who was presently driving her car. Maureen was sitting in the passenger seat. Forgetting things happens a lot to her. Everybody forgets things, she thought. She did not believe she had cognitive problems.
Maureen was an elementary school teacher before she was diagnosed with MS in 1988. She left teaching because she was “tired of writing lesson plans and tired of trying to handle 30 students.” She went to work doing light filing for a law firm. Eventually, she had to resign. She said the reasons were a few falls, the fatigue of a 9-to-5 routine, and the long distances she needed to walk. “I guess my physical limitations probably affected my work quality,” she said.
But her boss at the law firm saw it differently: “Maureen’s cognitive ability has gradually decreased in the past 2 years. Her short-term memory is the most obvious area. When giving her instructions ... each word has to be written out in order for her to complete the job. She does not have the ability to recall details of a conversation that just took place. This has affected not only her work tasks but daily personal tasks as well.”
Maureen’s boss helped her file her Social Security disability claims and find housing, and got her started on a regimen for completing financial tasks like paying bills. Even so, she did not believe she had cognitive problems—until she read an evaluation of her work at the law firm.
Why is it hard to admit to having cognitive problems?
“People are reluctant to admit to cognitive problems because they often feel these problems make them less of a person, almost as if these problems separate them from others. They often feel helpless,” said Dr. Jaclynn Faffer, who is executive director of Ruth Rales Jewish Family Service of South Palm Beach County, Florida. “We accept and know how to respond to the elderly who have cognitive problems, but when a person is young or middle-aged, we feel less comfortable.” Dr. Faffer said that today’s society has begun to accept physical disability, but there is more stigma when the mind fails to process information well. This only adds to the difficulty of accepting that a problem with the mind is real.
Research indicates that cognitive impairment may be the most significant factor in the high unemployment rate among people with MS. Even more than problems with walking or fatigue, changes in intellectual functioning can result in premature departure from the workforce.
Is there hope?
Yes—if the person is able to face the problem and take some action. “Take a deep breath, and see a specialist who can give you tools to help you cope in your life,” Dr. Faffer advised. “It’s important to know that there are techniques one can use to enhance cognitive function and develop positive thinking habits,” she emphasized. “Remember that knowledge is power. With more self-awareness, coping can improve.”
How do I know I need help?
“Do you find activities such as keeping track of appointments, remembering conversations, balancing a checkbook, or staying focused on a task without getting distracted becoming more difficult? These are some common MS-related problems,” said Dr. Rosalind Kalb, a clinical psychologist and director of the National MS Society’s Professional Resource Center. Dr. Kalb added: “It is important to talk with your neurologist. However, a person with MS may know that something is wrong long before a neurologist is able to detect any significant problems in a standard neurological exam. The person who is concerned about intellectual functioning needs to be proactive and request an in-depth evaluation. Ask for a referral to a specialist who can carry out this evaluation.”
Dr. Kalb always encourages people not to panic: “From what we know, cognitive problems tend to progress very slowly, and are relatively manageable with remedial interventions. It is important to prepare for the future with habits and techniques that can be learned in rehabilitation,” she said.
Life goes on
Maureen was able to admit her cognitive problems when her boss helped her do so, but neither of them realized that she might have benefited from testing and targeted rehabilitation. Even so, Maureen lives independently, is active in a church program, enjoys gardening, and reads extensively. She has found that sharing her memory problems with her family and friends, keeping a daily planner, writing lists, and using her wry sense of humor help her manage.
“Don’t forget the resources the National MS Society has to offer!” she reminded us. To people who think they have some cognitive problems, Maureen said: “See your neurologist and talk honestly. Give all the details.”
For additional information
Karen J. Zielinski is a Franciscan sister and heads the communications office for the Sisters of St. Francis of Sylvania, Ohio. This is her 25th year living with MS. Sister Karen writes 2 different monthly advice columns and serves the Society as an active volunteer.