If you’re living with multiple sclerosis (MS), you might have noticed changes in how you process information. The cognitive changes of MS affect anywhere from 40 percent to 70 percent of people with the condition, but these problems usually aren’t severe.
On MyMSTeam, almost 20,000 members have reported issues with memory loss specifically. “I can remember 20 years ago like it was yesterday, but I can’t remember what I had for supper last night,” shared one member.
“I felt bad when I couldn’t remember the name of the doctor I’d just seen four months ago when I got to the hospital and signed in,” another member wrote. “The receptionist told me it was OK and that they would take care of it. I went to my seat in the lobby feeling like I failed a fifth-grade test.”
Everyone forgets things sometimes, so it’s not always clear whether MS is responsible for a lapse in memory or if another medical condition or issue — like lack of sleep — is to blame. Sometimes an MS lesion is located along areas of the brain required to form or recall memories. Other times, medication side effects, anxiety, fatigue, or depression could cause forgetfulness.
Regardless of the cause, people with MS often benefit from organizational strategies, reminder systems, and brain games to help address memory problems.
“I write everything down in a notebook. Others on here set alarms on their phones,” explained a MyMSTeam member. Here are some clever ways to prevent memory problems from negatively affecting your quality of life with MS.
These days, it seems like everything requires a new username and password. If you set up online banking, sign up your kid for school lunch, or connect a streaming service to your TV, you’ll need to create a username and password. Keeping track of all these login requirements can be overwhelming for anyone, especially someone with MS-related memory troubles.
One member made light of this situation: “I can set up a connection and password for a website and then forget it all before I find a pen to write it down!”
Keeping this information in a known place can make daily tasks much easier. If you’re not concerned about others getting into your accounts, you can save passwords and stay logged in. Others maintain a login list on their phones or in a notebook, but be aware of the danger that someone untrustworthy could find your list. Password management apps and software can remember your passwords while keeping them secure. Most important, find a system that you’ll remember to use.
An old saying states the need for “a place for everything and everything in its place.” This simple and effective tip can make the difference between taking two minutes to head out the door and spending 30 minutes looking for essentials like your keys, wallet, or shoes.
“I’m misplacing things and then unable to remember where I left the item, so I try to put things in the same place to recall more easily,” said one MyMSTeam member.
Choose functional locations, like a hook near the door for your car keys, so you get into the routine of hanging them up as soon as you get home. Labeling containers or drawers with the items they hold can also help you stay on track.
Not everything needs a set location, but prioritize designating a spot for important items, like your medications. One member expressed frustration about forgetting to take medication.
“I got my MRI results tonight, and I’m kicking myself because I have new lesions partly because it has been so hard for me to remember to take my second pill in the evenings,” they said. “Ugh! I hate fatigue and forgetfulness!”
Others have suggested putting the pills in a visible area as a reminder. “I got a pillbox and put it where I couldn’t help but see it,” wrote one member. “That’s helped me remember to take my meds.”
Another uses an app that they find helpful: “I use this app called CareZone, and it sends me reminders of when to take my meds.”
MS-related forgetfulness can also mean not remembering if you already took your meds for the day. Using a pillbox divided by the days of the week or keeping a checklist next to your pillbox can help you keep track.
Focusing on one thing at a time lowers the chances of losing your train of thought or forgetting what you were in the process of doing. By cutting out clutter and distractions, you should find it easier to reduce the brain fog and sudden forgetfulness that can become frustrating and self-defeating.
When you’re working on a task or activity, ask others around you not to interrupt. If possible, close yourself in a quiet room without your cell phone or other distractions. Let your employer know you require a quiet space to be most productive, and find out if you can take advantage of remote working opportunities or use headphones to block outside noise.
If you get lost while driving, turn off the radio and minimize other distractions as much as possible. Learn how to adjust your phone’s settings so that you can turn on GPS while blocking other notifications when you’re on the road, helping you stay safe and on the right course.
Read more about MS and driving.
Keeping clear records gives you a handy backup when your memory doesn’t deliver. Everyone has their preferences for where and how to keep track of information, and you’re most likely to stick with a method that’s easy for you to use and readily accessible.
For instance, you could carry a pen and a small notebook or pack of Post-its for jotting down reminders and details. One member described their daily habit: “I have to make a to-do list every day, or I will forget. Also, I may not have motivation. The list gets me up instead of lying around all day, which I want to do. I also journal and have notes everywhere, lol. It makes things easier for me.”
Another joked, “I understand about the memory thing. My trick … write everything down. My lists have lists! I swear, I keep Post-it in business. Just make sure you know where you put the list. :)”
You might feel it’s quicker to snap a photo on your smartphone, send yourself a text, or make a voice recording. For example, if you’re concerned about forgetting where you parked, you can take a quick picture of your parking spot near a recognizable sign or landmark so it’s easier to find later. Incorporating small tricks like this into your daily life can save you time and needless worry.
Exercising your brain is vital for maintaining cognitive functions like memory, whether or not you have MS. To put your memory to work, you could challenge yourself to learn a new skill or play board games that exercise your short-term memory, such as matching games.
One member shared their strategy: “Trying to read a great book. I read a few chapters. Then, by evening, I have to reread it. It helps my memory recall.”
If your memory feels a little less sharp than usual, be kind to yourself. Find activities that address symptoms of poor memory and also allow you to have some fun in the process.
Let your health care provider know about all types of memory loss, including short-term problems and long-term deficits. They may suggest cognition testing to identify cognitive problems and set a benchmark for your current abilities. They can also help determine if your memory concerns are likely symptoms of MS or another lifestyle factor or medical condition.
Read about cognitive rehabilitation and how it may help with cognitive symptoms of MS.
MyMSTeam is the social network for people with multiple sclerosis and their loved ones. On MyMSTeam, over 195,000 members come together to ask questions, give advice, and share their stories with others who understand life with multiple sclerosis.
Have you experienced memory problems from MS, and if so, how do you manage them? Do you have any tips for others who have recall difficulties? Share your thoughts in the comments below, or start a conversation by posting on MyMSTeam.