Editor’s Note: This is the first in a 4-part series by multiple sclerosis (MS) columnist Anita Williams exploring cognitive issues associated with MS that she feels do not get the attention they deserve.
The definition of multiple sclerosis (MS) itself describes one of the challenges with this chronic illness. The “multiple” word means it can rear its frustrating head in nearly every part of the body. When researching MS symptoms, the emphasis is often on the physical ones. In particular, ambulatory issues are spotlighted by healthcare providers (HCPs) using the clinical trial-oriented Expanded Disability Status Scale (EDSS) to determine or measure MS disability in people with MS.
But sometimes not getting the necessary attention are issues related to the quality of life for MS patients. In my experience, ask anyone living with MS what is topmost in their minds, and many will say cognition impairment. It is an MS symptom that affects between 40% to 65% of MS patients, according to the National Multiple Sclerosis Society (NMSS). Of those affected by issues related to thinking or memory, they will likely tell you that worries related to brain function are always present.
Read about the diagnosis of MS
Cognitive impairment is a sign that deserves closer consideration from both those living with MS and their healthcare provider (HCP). Luckily, when it comes to cognitive impairments and MS, the available clinical research is continuing to grow. The ability to quantify research results, along with greater demand, makes this area less complex to study than qualitative issues such as individual perception. These studies, often in conjunction with reporting by MS patients, have created the ability to identify some common symptoms of cognitive difficulties.
According to the NMSS, certain functions are more likely to be affected than others:
- information processing (dealing with information gathered by the 5 senses)
- memory (acquiring, retaining, and retrieving new information)
- attention and concentration (particularly divided attention)
- executive functions (planning and prioritizing)
- visuospatial functions (visual perception and constructional abilities)
- verbal fluency (word-finding)
Ideally, a baseline of cognitive functioning should be done as soon as an MS diagnosis is determined as a part of best practices. Even if this baseline was not created during an early diagnosis, it would behoove HCPs and their patients to be aware of these signs and keep track of them over time.
Talking about hard issues with patients is par for the course for healthcare providers. It is never a pleasant task and it is made infinitely harder when the topic is related to mental health.
As a person living with MS, I am completely aware that my cognitive abilities will most like suffer a decline throughout my chronic disease. I am a person who is extremely cerebral and loquacious. I love my brain and its capabilities. The knowledge that my superpowers could be lessened or stripped from me is a painful thought. I am certain I am not alone in these feelings, so spotting problems as early as possible is the goal. Knowing how to detect those changes is key.
In the second part of this series, I will cover tools for detecting and tracking cognitive changes.