Staying On Track Through The Brain Fog
Keegan, my husband with AS, and I have finally found our system to keep appointments, get tasks done, and (gasp) accomplish goals for our family. Brain fog has always been a burden for Keegan. During its best, it just takes some extra time to complete tasks and he needs a few reminders. At its worse, he loses track of conversations mid-sentence. He can't remember why he's in a certain room or what task he was completing.
Brain fog is a loss of cognitive functioning
Cognitive functions help us think, plan, remember, and strategize. They're the primary mechanisms of our brain that helps us execute tasks. Brain fog is just that: a blurring of ability in our brain. It's a debilitating symptom of AS, as we perform hundreds of tasks every day. Keegan's a stay-at-home dad, which definitely requires task planning and execution. So how does he do it?
Plan together, execute separately
To make sure we stay on track and don't miss anything important, Keegan and I plan our tasks together. We have many places we track to-dos, appointments, and goals. We've found the most success in having a combination of digital and physical artifacts to remind us of who is doing what task and when it's due.
Digital artifacts (To keep track of long term)
- Google Calendar: We share a Google calendar and both have reminders set in email and notification form on our phones. It gives us a good place to put all our upcoming events, even 1 year out, so we can see if a vacation or doctor's appointment is coming up.
- Wunderlist: Every week Keegan and I look at upcoming events and tasks that need taken care of. We have a master list of tasks we add to over time and weekly we comb through them to 1. Bring in any urgent tasks and 2. Tackle tasks that we have time for. Once we decide which tasks we want to complete for that week, we assign a person and a deadline. If that person can't complete it, we let the other one know and come up with an alternative plan. Because it's digital, Keegan and I can both add to our list as we think of new items throughout the week. It's great to have an app on my phone and access the site through my computer at work.
Physical artifacts (to keep track of short term)
- Weekly calendar on our fridge: These plot out the upcoming week in more detail than just the events in our Google Calendar. It may include if I need to work late one night or plan on working from home. It's a consolidated view of events, tasks, and goals for the week.
- Keegan's goals board: To keep himself motivated, Keegan has found making small lists for each day and checking them off to be immensely helpful. Even if it's small progress, it's still progress.
- Notes around the house: Keegan uses Post-It notes around the house as physical reminders to help him know when or if he needs to complete a task. For example, he leaves notes on the backdoor so he knows what to take when leaving the house. He'll also put notes around if he has an upcoming appointment he shouldn't miss. This constant visual reinforces his memory throughout the day.
Forgive when something is missed
None of this matters if we're not willing to forgive each other. I'm a mom, caregiver, and income earner for our family. Keegan has AS, chronic pain, and is a stay-at-home dad. It's easy to forget and easy to start a task and then get pulled out of the moment before we can finish it. It's taken a while to get here, but it was the most crucial piece when we started finding a system that worked. Plans are there only to support us. They don't rule our lives. So, if you're trying to find a system that works for you, remember to give yourself the space to miss deadlines and forgive yourself.
Other than back pain and fatigue, what is the most common symptom that AS patients experience?