It’s All About the Base
Last updated: October 2022
Shaped by your medical, social, and family history, a health baseline is continuously influenced by factors affecting your everyday life. Even though some healthcare baseline components are more adjustable than others, it is crucial that you have a precise understanding of your present health status.
I am a firm believer that every person living with a chronic disease, especially those of us with multiple sclerosis, needs to document their baselines in physical, emotional, and cognitive health. Why is each of these domains significant? Let me explain and share some general examples.
Let's take a look at physical MS baselines
How well does your body perform compared to how it functioned last year or last decade? It’s so general and not useful to say “I’m not doing as well as I used to be” compared to being able to specifically state specifics.
For example, five years ago in physical therapy, I was able to comfortably walk on the treadmill at the speed of three miles per hour. This year I would be fortunate to keep a two-mile-per-hour pace. This is a direct comparison that allows me and my medical team to know my walking has decreased by 50%, which is a significant change.
Or conversely, maybe my physical baseline has not changed dramatically over time, indicating my physical function is steady and whatever I am doing for my MS (treatments, exercise, or other modalities) is working and I should keep it up. Changes to the physical baseline are easily measured and should be a standard part of our medical records.
Emotional ups and downs
Our emotions can change like a roller coaster. Ups and downs are not unusual when living with a chronic disease, but going from up to down and remaining in those depths is a significant marker. Often, we don’t recognize this on our own, because it is too easy to brush aside abnormal emotional markers as normal.
Screening for depression should be a regular part of our MS treatments and would provide insight for our providers as well as ourselves. Some forms of depression may come from the situation of living with MS, while other episodes of depression might be caused by the neurological changes in our brain due to lesions.
Both psychological and physical (MRIs) testing give us a baseline to better understand any emotional changes we experience as our MS journey evolves.
Tracking cognitive function
This may be the most important baseline of all. The cognitive decline of people with neurological diseases is often misunderstood and under-represented. The National MS Society estimates up to 50% of us living with MS have cognitive change and can often be the very first symptom of this disease.
Doing our own assessment of how well we are functioning cognitively can be a challenge because it isn’t sufficient to just say ‘I don’t think as well, or as fast, or as thoroughly as I used to,’ especially encountering new information and in new situations. This is why often on patient surveys we are asked ‘do you have difficulty keeping track of appointments’ or ‘do you need instructions to be repeated’ or ‘can you keep track of your medications?’
These and many more routine assessment questions are indicators of cognitive function and possible decline. Unlike physical and emotional changes, cognitive change can be especially invisible as we develop our own coping mechanisms to compensate for changes. If you have the tests of cognitive functioning done early in your diagnosis you have critical baseline evidence to use to support cognitive decline.
Coming back to base
Being able to function well physically, emotionally, and cognitively is critical in all aspects of our lives, but particularly if we work outside of the home. These declines can be a basis for taking disability leave from work, but the change has to be provable.
If you have baselines to compare to your current condition, it provides key documentation to use when submitting a disability request. It really is all about the base.
Do you use any of the following assistive devices?
Join the conversation