Total Recall

A daily journal can help people with memory stay organized.

Jan Mycholuk of Sherwood Park, Alberta, has trouble remembering things. The forty-something wife and mother has lupus, a chronic autoimmune disease. It affects her central nervous system, and particularly her short-term memory. “There have been months that my memory was so bad that I couldn’t remember what I had to do on a daily basis,” she says. At one point, her husband even had to phone her from his workplace at breakfast and lunchtime to remind her to eat.

Short-term memory problems can occur with a variety of disabilities and chronic conditions, from depression to multiple sclerosis to brain injury. Such memory loss is often frustrating and devastating, as people with disabilities try to live, work and maintain control over their lives. It can even be dangerous – for example, if a pot catches fire because someone forgot he or she was cooking.

Mycholuk coped by assigning a day to each household chore, such as laundry on Mondays, and writing them on a calendar. “This system worked well as long as I remembered to check my calendar and completed the job immediately,” she says. “If I checked my calendar in the morning and didn’t take care of the item by lunch, I’d forget that I had something to do that day.”

Some people seek professional help for their memory problems. Diane Metzger, coordinator of “Inroads: Literacy, Memory and Cognitive Intervention for Persons with Brain Injury,” a tutoring program in Halifax, Nova Scotia, says most of her students use supports or aids, such as an appointment book that allots two pages per day. One page is used to keep track of appointments, phone calls, expenses and to-do lists. The other is for recording thoughts, details of conversations and notes from appointments. Some people also use memory exercises, such as word association, repetition and rhyming.

Metzger also gives her students a handout adapted from Coping with Mild Traumatic Brain Injury by Diane Roberts Stoler and Barbara Albers Hill. Among the recommendations: limiting alcohol consumption; having clocks and calendars around the house; setting a timer to go off while you are cooking or doing household tasks in case you get distracted; and using visualization and association of smell and touch, such as covering school materials with fabrics of different colours and textures. “For an injured, fatigue-prone brain, such sensory supports to recognition and recall are essential,” says Metzger.

Getting organized to help compensate for memory loss is high on Metzger’s list as well. She offers simple suggestions, such as labeling drawers, posting checklists and notes (such as placing a reminder to turn off the coffee pot inside the front door), and putting keys and wallets in one spot.

Organization helps Kathleen Morrison, a thirty-something brain injury survivor and resident of Dartmouth, Nova Scotia, at her job as an administrative assistant with the provincial government. “It’s really important to be focused and not have too many things to think about at the same time,” she says. While keeping her desk tidy helps, she says that using a personal digital assistant (PDA), a pocket-sized, hand-held electronic device such as those made by Palm, has “really made a big difference.”

Morrison was 18 when she was brain-injured in a car accident. She finished high school by reducing her course load and “taking a lot of notes” rather than recording lectures on a tape recorder, which she found too cumbersome. She went on to earn a Bachelor’s degree and a human resources management certificate from St. Mary’s University in Halifax, which she jokes she managed to do with the help of “lots of coffee.”

“I’ve always been a lists person,” says Morrison. However, her memory problems meant that she would often forget to look at her daily planner. It wasn’t until she borrowed a PDA from her vocational counselor that she discovered how much technology can help.

Small and lightweight, a PDA can hold a to-do list, date book, expense tracker and directory of phone numbers and addresses. (Fancier models also function as cell phones, MP3 players and cameras.) The font can often be made larger and the screen colours inverted for people with low vision. Some PDAs can be modified with speech input and output software, touch-screen technology and keyboards for people who cannot use the stylus. According to the National Center on Accessible Information Technology in Education in the U.S., PDAs’ organizational and task management functions are also helpful to people with learning or cognitive disabilities.

“I put a list of things I need to do on the PDA when I get to work and delete them as I do them,” Morrison says – things like turning on the lights and checking that the board room hasn’t been double-booked. Morrison programs her PDA to beep and show her a reminder 15 minutes before a deadline or an appointment. She also uses it for shopping lists, and to remind herself to return library books.

While PDAs can be very helpful, not everyone is comfortable using high-tech gadgets, and at a starting price of $200, PDAs are also unaffordable for many people. Says Erika McFarland, an occupational therapist at the Nova Scotia Rehabilitation Centre in Halifax, “My colleagues and I have had limited opportunity to use some of the more complex devices due primarily to the limited financial resources available to our clients.”

Jan Mycholuk prefers lower-tech tools. Her sister bought her a pen on a string and attached a notebook bearing the message “If lost, return to [Mycholuk’s husband’s name and number]” on the inside cover. Although it was given to her in jest, Mycholuk says, “I used that notepad all the time and it really came in handy.”

However, not all situations that arise because of memory problems can be neatly solved. Mycholuk’s two sons sometimes took advantage of her memory loss. “If I took away their TV privileges,” she says, “they would wait an hour and turn the TV back on. They knew I would forget that I had administered any punishment. If I gave them money to run an errand, they would keep the change because they knew I wouldn’t remember sending them.”

But Mycholuk and her family didn’t despair over her memory loss. Instead, they used humour to cope, just as they did with other complications of her lupus. “We laughed a lot,” she says, “although I don’t remember what we were laughing at.”