Last updated: July 2023
I was outside on my deck with my not quite 2-year-old granddaughter. We were having a pleasant conversation, as much as you can have with a toddler, when she paused and looked upward, pointing and declaring “look, sky blue.” Of course I gave her my reply to add the correct syntax and said “yes, the sky IS blue.”
Even without the present tense verb, her meaning was clear. We have had so many gray sky days that even to a toddler, the change was obvious. She knows her colors and her observation was so accurate, there was no doubt the sky was blue that day.
Her observation about the sky comes just a day after I was in a discussion with a group of multiple sclerosis researchers about the accuracy of patient-reported outcomes.
Relying on memory alone is tough
We are working on an iConquerMS project that captures COVID-19 data from people with MS. This data includes lots of participant-provided dates, such as vaccine dates, exposure to COVID, and duration of symptoms from both vaccines and COVID.
The data set has conflicting information from some people, and the research team was discussing how to resolve these differences. As I listened to the discussion, it reinforced my belief that relying on memory alone is not such a great tool, especially for people with MS.
Keeping track of MS patterns
When people are initially diagnosed with MS, a common piece of advice that is shared with them is to keep a journal and write down their symptoms and questions for their providers. We have all experienced that time when a medical appointment is done, and as we leave, we think of ‘one more thing’ to add or question. Having written notes for reference can be essential for most of us in getting the most out of our appointments.
We have also been asked about the dates of vaccines, symptoms, appointments and other calendar-type events. If you are at all like me, you’ve had to pause and then go research for the right answer by combing through medical records. The only recorded dates I have readily accessible are my COVID vaccines, thanks to those little cards the CDC provides for the shot provider to complete.
I had to admit during this research discussion that my memory of other dates is less than reliable. Sometimes I find myself just guesstimating rather than being completely accurate. This research problem brings me to the additional thought about how important we are as observers of our own medical history and MS patterns.
How records can help us
Memory alone is not necessarily accurate, and I think recording information for later retrieval should be a regular part of our own MS care. This can be done in a small notebook, on a computer, or even on your smartphone. Capturing dates and events as they occur is much easier to do accurately than to wait until later to do a summary recap.
The next time you need to share observations about the state of your MS, these notes can be invaluable. Not all of our observations are as clear as a brilliant clear blue sky, and keeping a record can help us to see changes over time that otherwise might not be so clear.
Wishing you well,
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