Managing Your Mood and Cognition issues with MS
Some symptoms in MS, such as changes in mood and cognition, seem to be more challenging than other symptoms for individuals with MS and the people who care about them. There are several factors that likely contribute to the challenging nature of these symptoms.
First, MS symptoms and diagnosis often occur earlier in life than other chronic illnesses when people are making major decisions and commitments about jobs, relationships, children, and finances. MS becomes an extra and unwanted consideration in this decision-making process. Secondly, many MS symptoms such as fatigue, pain, cognitive changes and depression are largely invisible to others but can still affect a person’s functions, roles and responsibilities. Many people with MS find these symptoms more difficult to describe leading to poor understanding and sometimes faulty conclusions by other people. For example, symptoms are sometimes attributed to laziness, inattention and lack of caring, rather than MS. This can add to stress and conflict in important relationships. In addition, invisible symptoms are easier to minimize and sometimes even ignore. This can be even more complicated when symptoms fluctuate in type and severity from day-to-day and week-to-week. MS symptoms can also be challenging because they negatively affect self-esteem and body image even when you look the same. Consequently, symptoms such as depression and cognitive changes are often not talked about and go untreated. In addition, MS symptoms can overlap, so sorting them out can be difficult. For example, fatigue can be a symptom of depression but depression can also be the result of being tired and not able to participate in previously enjoyed activities. It is often assumed that changes in physical function are the most challenging, but for many people with MS and their families, changes in cognitive function and mood, especially depression, are two of the most challenging symptoms.
Cognitive functions include multiple mental activities such thinking, understanding, concentration, learning and remembering, processing information, problem-solving, decision making and communication. It is important to keep in mind that not all cognitive functions are affected in MS. For example, general intellect, long-term memory, conversational skills and reading comprehension are generally unaffected. In MS, approximately half of people with MS experience mild to moderate changes in short-term and working memory, sustained attention, information processing speed, verbal fluency, abstract reasoning and visuo-spatial perception. These changes can impair day-to-day functioning in a number of ways, e.g., you get less done at home and at work, you forget appointments and medications, you have difficulty getting out what you want to say, you are more easily distracted when trying to concentrate, you are not able to keep up with conversations, and driving safely can be a challenge. Of added concern, people with MS-related cognitive impairments are less likely to be employed, engage in fewer activities, and are more vulnerable to emotional problems like depression. In addition, these changes are often associated with more conflict in your relationships at work and at home only adding to everyone’s level of stress and distress.
Although depression is often the most talked-about change in mood for people with MS, increased anxiety and moodiness are also common. Moodiness tends to be the change noticed and reported by family members. Major depression is common in MS with at least 50% of people with MS experiencing a major depressive episode at some point in their life. While depression can be an emotional reaction to the diagnosis and subsequent changes that can come with MS, depression in MS probably has multiple causes including neurologic, immune and psychosocial. Remember that major depression is different from normal grieving. A diagnosis of major depression requires that a person have experienced a depressed mood and/or diminished pleasure in activities nearly every day for at least two weeks. In addition, some combination of the following symptoms also needs to be present--significant changes in sleep, appetite and weight; loss of energy and fatigue; decreased interest in being sexually active; and difficulty concentrating and making decisions. With major depression, recurrent thoughts of death are often present. This raises concern about the possibility of suicidal behavior particularly when people are feeling hopeless and have become isolated. This description of major depression shows how much overlap there can be among depression, cognitive changes and other symptoms of MS adding to the difficulty in diagnosis and treatment. Unfortunately, many people with MS live with symptoms of depression for years because they assume it’s just part of having and/or previous attempts at treatments have not been effective. It’s important to keep in mind that depression negatively affects many aspects of life including involvement in activities, relationships (people with depression have difficulty communicating and can be hard to live with), and work at home and on the job. Of note, people without MS, such as support partners can also become depressed and experience all the same consequences.
The good news is that there is much that can be done to reduce the severity of the symptoms and their negative impact and improve function. As a result, quality of life improves for everyone. Effective treatment cannot begin until the symptoms are thoroughly evaluated and an accurate diagnosis made. In order for this to occur, you need to talk with your team of health care professionals who help you care for your MS. When describing your symptoms, it helps to be specific and give examples of how the symptoms are affecting you. These professionals will likely be able to start the evaluation process and refer you to people who specialize in these areas as needed.
In the case of perceived cognitive changes, you may be referred to a neuropsychologist, speech and language therapist or occupational therapist for an assessment that will include some testing. This will assist in identifying the type and severity of cognitive deficits and generating treatment recommendations. These recommendations are likely to include some combination of compensatory strategies and forms of remediation that involve “retraining the brain.” Compensatory strategies are skills and techniques that help you cope more effectively with cognitive changes. These strategies include improved organization, various techniques for assisting with memory issues, and development of routines. Brain retraining may include activities such as “brain games” or an introduction of cognitively challenging activities (think Lumosity), but it will also involve identifying and targeting specific areas of cognition that have been affected. Neuroplasticity, or brain plasticity, is the scientific concept that the brain’s structures and pathways can be altered based on learning and experience. This concept is the driving force behind “retraining the brain”. Currently, there is limited (but emerging) evidence that brain retraining or cognitive rehabilitation are effective in MS, but it is generally agreed that staying mentally, socially, recreationally, and vocationally active improves quality of life, maintains cognitive skills and decreases rates of depression.
For depression in MS, the recommended and most effective treatment for major depression is a combination of psychotherapy and antidepressant medication. The addition of regular exercise also seems to help. When possible, seek services from providers (psychiatrists, nurse practitioners and psychotherapists) who have experience working with individuals and families living with chronic illness because they are more likely to understand the issues. You can usually identify these professionals by talking with your MS care team and contacting the local chapter of the NMSS.
Although mood and cognitive changes are common in MS, there is much that can be done to reduce their negative impact and improve function. Educating yourself and others about these symptoms increases understanding of the symptoms, provides a language for better communication and reduces stress and conflict. With greater understanding of what your symptoms mean and don’t mean, people are in a better position to hear your concerns and provide assistance in the way you want it provided.
Click here to get even more great tips on this topic by viewing the archived webinar on MS Symptoms Part II: Managing Mood and Cognition Issues.