Memory can be affected by MS. Confusion can accompany attacks and can be associated with memory difficulty, but this is not defined as true memory impairment. It is associated with generally impaired cognition. Anxiety and/or depression also can rob a person of their ability to maintain attention. When the anxiety or depression abates, memory is again normal.
However, memory complaints tend to increase with the duration of illness and disability. The recent Avonex CHAMPS trial documented that early treatment in the course of the illness can prevent cognitive impairment.
I used to be smart. When I try to barter with God about my MS, I offer walking in exchange for my memory. When I get sad, angry, depressed, or frustrated with MS, it is usually about my cognitives. When I want my pre-MS self back, it is my intelligence I long for.
In 1996, when I was first diagnosed, I had trouble reading—not surprising given the vertigo, limited vision, and medications. After these symptoms subsided, I still had trouble reading—not problems seeing the words, but rather processing the words.
By the time I would finish a page I had no idea what I had read. Cognitive problems were not mentioned or referred to in anything I researched about MS. Dr. Sheremata validated my experience and suggested neuropsychiatric testing to ascertain my cognitive status.
The test results revealed that my long-term memory and even short-term memory were fine, but my short-term working memory was a problem. It was reassuring to know that I was not imagining this, but it was shocking to see the numbers in print—my short-term working memory was in the bottom 16%!
What this translates into is difficulty learning new information (phone numbers, names, and places where my things are moved), processing new information (understanding a new or unanticipated item), manipulating information (changing times for an event), making decisions (determining what to have for dinner), and transferring data (addressing an envelope).
I can use some other parts of my brain to compensate or almost mask what is occurring, but if I am physically tired or challenged, I do not have cells available, and my cognitive functioning “floods.” Moreover, it is not easy to explain to others that my cognitives are shutting down.
In the last few years, cognitive problems with MS have become recognized. However, it is still not easily discussed; cognition goes to the core of who we are, and often people do not want to acknowledge or even know about it. I have been at MS support group meetings where bladder control and erectile dysfunction are discussed openly and with ease. If I mention cognition, the room goes silent, and no one wants to talk about it.
In addition to acknowledging cognitive loss, I manage this MS symptom with medication, compensatory techniques, and rehabilitation. The medications I tried for cognition had not been studied for MS. However, with my doctor’s supervision, I took Aricept and memantine. As for compen-satory techniques, the expert advice is not very advanced.
The best suggestion that they offer is to keep a “to do” list, something a life-long obsessive-compulsively organized person like me has been doing forever! I also have routines and systems to remind me to take medicines, that I have an appliance working, and how to reorient myself when I get on cognitive overload.
I tried structured cognitive rehabilitation—even going to an Alzheimer’s clinic—for many months to see whether their techniques could have application to my MS. Finally, I met with a psychologist who helped me develop rehabilitation techniques. We took certain activities (most of which I was unfamiliar with) and combined them, trying to create new pathways in my brain, retrain and reinforce old pathways, and establish new skills to have as backups to existing pathways.
For example, I memorize verses; take piano lessons; do origami, needlepoint, and jigsaw puzzles; play card games; and juggle. As I improve in these functions I try to do these tasks and add in NPR or a recorded book in the background. It is humbling to struggle through things many kindergartners do with ease.
It is both frustrating and a bit frightening when I find myself unable to recall how to do the task or to start to “melt down” as I re-re-re-remember the song I played last month on the piano. However, it can also be empowering to finally be able to master turning a piece of paper into a bunny or a series of notes on a page into music.
Recently, my husband came home and said, “What a great origami bird. I think you’ve got it. I am so proud.” At first I shared in this feeling of triumph. Then reality hit, and I gave him a twofold response, “A, this is not a bird: it is a flower, and B, I did not go to law school for 3 years to make paper toys!” Before MS, I was smart with little effort; now it is enough to try to be smart about the loss of my cognitive ability and to do what I can to retain and retrain it.