Mind Matters: MS can bring changes to mood and memory - Multiple ...

Mind Matters MS can bring changes to mood and memory. The good news is both can be managed. by Avril Roberts "My past is slipping away from me as though it never was. Names, faces, memories, lessons I learned, things I was told, experiences I lived, people I knew, words I spoke… They're all blurring together and wiping each other out. MS or age?" It's a private moment, a quiet moment, a glimpse into Chrystal Gomes' mind as she records her thoughts and experiences in her journal. Chrystal, 38, also uses the journal to help determine if her cognitive and mood changes could be MS-related or not. She's in good company. Researchers are posing similar questions, and they are discovering that over 40 percent of people with multiple sclerosis may have cognitive impairment, usually mild problems. Also, 50 percent of people with MS experience depression. Research is validating the anecdotal evidence, long supplied by people with MS, that MS can affect not only the body but also the mind.

This shift in perspective traces back to the mid-1980s when magnetic resource imaging (MRI) was introduced into clinical use. "Suddenly, you could visualize the brains of MS patients with greater sensitivity and see big plaques (lesions) in the brain," says Dr. Anthony Feinstein, associate professor of psychiatry, University of Toronto, and a practising neuropsychiatrist at Sunnybrook and Women's College Hospital. "When researchers could see the degree to which the brain was involved, they began questioning how this would affect people intellectually. From there, they started to explore cognitive abnormalities in much greater depth." Dr. Jennifer Rodgers is a clinical psychologist with the University of Alberta Hospital in Edmonton. Eighty percent of her outpatient work is with people with MS. She recalls, "When I started 18 years ago, neurologists were still saying there's no cognitive involvement in MS. Now with MRI continued on next page

This article originally published in MS Canada, August 2004, p. 1

and sophisticated neuropsychological testing, we estimate the prevalence at 43-59 percent." "Our recognition of this is good news because people used to complain that they knew something was different, something was changing, especially when it comes to memory, but their comments would be downplayed and people would go away feeling unheard. Now we can address their concerns head on." Dr. Rodgers says many of the community neurologists who specialize in MS now refer clients to her at the time of diagnosis. She sees her role as helping newly-diagnosed people put matters into perspective. "Letting them know that their fears are legitimate but if they give themselves time, learn about their MS and go on the medications, they may become more optimistic. I help them figure out where they are emotionally." Ten years ago, Chrystal Gomes could have used this kind of help. She was lying in a Toronto hospital bed laughing uncontrollably. "I felt on top of the world. I was going from one extreme to another. One minute, crying like I had lost someone close to me; the next minute laughing hysterically." "People who came to visit were commenting on how they came to cheer me up but I was cracking jokes and cheering them up. There was a kind of craziness about it. I felt I was going bonkers." A few days later, Chrystal was diagnosed with MS but no one told her there could be a connection between her mood swings and MS. MS can influence the mind's ability to store, organize and recall information and the way the mind regulates moods and emotions. Cognitive changes in MS usually show up as memory problems, a shorter attention span and a slowing down in the time it takes to process information. The most common complaint is memory problems, especially with short-term or working memory, as in the ability to remember a sentence that has just been read. However, it's not the same kind of memory loss that occurs in Alzheimer Disease.

"You rarely get the kinds of cognitive pictures you get in Alzheimer Disease," says Dr. Feinstein. "The presentation of cognitive problems in MS is fundamentally different." A small percentage (about 5 to 7 percent) of people with MS may have severe problems with thinking, reasoning or judgment and not realize it. Family members, co-workers and friends may be the first to notice something is wrong. As with the physical symptoms of MS, there is great variability in the onset, duration and experience of cognitive symptoms. Cognitive problems in MS can be directly correlated to lesions in specific areas of the brain. They are a function of the illness, not a reaction to having MS; however, there are instances where problems with memory, attention and focus may be related to depression, so it is important to get a proper assessment. Neuropsychological testing is the gold standard for determining if someone has cognitive impairments. It is an extensive process of up to five hours of tests examining various aspects of brain function, such as recall and attention. A neuropsychologist usually administers the testing. There are no current medications for reducing cognitive problems in MS. However, researchers are investigating the effectiveness of donepizil (Aricept) in improving memory function. They are also studying the effects of modafinil (Alertec) on alleviating attention problems. (Aricept is used to improve cognitive function in people with Alzheimer disease. Alertec is prescribed for the treatment of MS fatigue.) The donepizil study involved 69 people with MS with mild cognitive problems: 65 percent of those treated with donepizil said their memory had improved, compared with 32 percent of the people taking the placebo. Memory improvements were still noticeable even after six months. In the modafinil study, 22 people with MS with attention problems were given modafinil in combination with interferon beta-1a. Their neuropsychological test results showed significant improve-

This article originally published in MS Canada, August 2004, p. 2

ments in complex attention, information processing "Depression can come initially with the loss of speed and working memory. People also reported one's perception of health, and it can come later on improvements in their quality of life. These encourwhen the reality of physical loss adds up." aging results will likely stimulate further research in Some people will have experienced depression this area. long before their MS diagnosis. "I've battled In the absence of medications for their cognitive depression most of my life," says 50-year-old problems, people with MS find ways to compensate Gloria Kabele. "Looking back, I wouldn't say it or make adjustments. An occupational therapist can was initially related to my MS because there were provide assistance with developing rehabilitative other issues. But certainly getting a diagnosis of strategies for coping with cognitive problems. MS contributed to the depression I had fought all Chrystal Gomes writes notes to herself or leaves my life." phone messages as a reminder of things she has to do Whatever the cause, depression in MS can be and people she's going to meet. treated effectively through Gloria Kabele of Vancouver takes drug therapy and psyCoping tips for memory and frequent breaks, especially when chotherapy. Physicians can attention problems she's writing articles or presentaprescribe antidepressants tions. "Just so I can have fresh such as amitriptyline Focus on what you can do, not what eyes when I return to whatever (Elavil) and sertraline you can't. I'm working on." Try to be patient when it takes you (Zoloft). Psychologists reclonger to do simple tasks. When it comes to mood ommend cognitive behavTake notes. Write things down changes in MS, the most common ioural therapy (CBT) as the whenever possible. experience is depression – major therapy of choice for reacKeep a journal or diary. depression, not just a fit of the tive depression. CBT is a Use post-it notes, notepads, wipe-off blues. Far less frequent is another short-term, time-limited boards. type of mood change called mania Embrace technology. Use electronic therapy that focuses on organizers, email, voice mail, palm – periods of excessive giddiness. changing hopelessness and pilots. A small percentage (about 10 pernegative thinking. Split information into manageable cent) of people with MS may have Gloria promotes posichunks or categories. bouts of uncontrollable laughing tive messages when she Try to do one thing at a time and cut or crying. counsels newly-diagnosed out distractions. The classic symptoms of Take frequent breaks. people, in her capacity as a When introduced to someone new, depression in MS are irritability, MS Society of Canada repeat the person's name and use it anxiety and persistent sadness. volunteer. "I try to emphain conversation. A family doctor or neurologist size that MS is what you Keep a pen and paper by the telecan diagnose depression based on have. It's not who you are. phone. the signs and symptoms. I also encourage people to Establish routines and stick to them. The fact that people with MS Be honest about memory problems. honour themselves and Try to stay calm when memory fails. are five times more likely to expelove themselves and not rience depression than other peothink they're less of a perple may be attributed to a variety son because they have the of causes. disease. To give themselves permission to have Brain lesions: There is now firm evidence linkMS and to deal with it in a way that works for ing depression to the presence of lesions in particuthem." lar regions of the brain. Medications: People may What works for Gloria is to "have a pity party have adverse reactions to the steroids that control and then move on." This philosophy has brought inflammation or the disease-modifying interferons. her more good days than bad. She is also open to Underlying psychiatric illness: A complete assessexploring alternative and complementary therapies ment may be in order. A psychological reaction to – reiki, reflexology, vitamins and nutrients, diet having MS: Dr. Rodgers says this is likely the nummodification – and particularly enjoys the mental ber one reason. continued on next page This article originally published in MS Canada, August 2004, p. 3

and physical focus and the sense of control that been a stigma about mental disabilities and depresyoga provides. She sees the scientific interest in sion. It's wonderful that this is being seen to and how MS affects the mind as a welcome and longresearched and acknowledged. It will help us feel overdue recognition that the body is more than a set less alone." of physical symptoms. Adrian Sivell in Toronto thought freedom was For Chrystal Gomes, the zipping around on a scooter. breakthrough was a huge sign That's before he took up sailing. Coping tips for that read: Live large or go Sailing has helped blunt the depression home! Chrystal saw that sign anger and denial Adrian used to Give yourself permission to feel each day in the final stretch of associate with having MS. frustrated and angry. an intensive eight-week selfFormerly a keen swimmer, Learn to recognize the vital condiscovery course. "I knew then windsurfer and canoeist, Adrian nection between your thoughts and that I had been living very small had given it up all due to his emotions. all my life, as a very negative, changing physical abilities. On Surround yourself with positive depressed and introverted perpeople as much possible. the advice of a friend from his Do volunteer work to take your son. I realized I had to take a support group, he signed up for mind off yourself and to feel useful. step to change and look at life in disabled sailing and rediscovLaugh at yourself. a different manner. I had been ered his love of water sports. Set aside a set period of time to focusing on negativity but now I "Sailing gives me an amazfeel sorry for yourself, then get on had to do the opposite and go ing sense of freedom. There's no with things. the positive way." Be aware that you have choices machinery or wheels, just the about how your handle MS and its She has never looked back. wind, ropes, sails and water symptoms. She is living her dream of splashing and flowing around Learn what you can about MS and becoming a comedian, refining the hull. The boat goes where I the available treatments. her act at the American Comedy want. I'm in the cockpit with a Share information with your partInstitute in New York and persilly grin on my face." ners and family. forming at a Toronto comedy Try to get some exercise each day. Participation in the 2003 Know your rights and responsibiliclub, as well as at corporate, priMobility Cup regatta for disties with respect to work accommovate and charitable events in abled sailors across North dation. Canada and the United States. America gave Adrian a feeling Communicate. Be honest about She uses linking words to assoof belonging that he hadn't your fears and concerns. ciate one joke with the next, experienced in a long time. Challenge yourself to do things you writes key words on cue cards never dreamed of. "Sailing has given me a new and tapes her performances. Her perspective on life. It's allowed next goals? To do a one-woman me to meet many new people. It comedy show and take on a permanent, part-time gets me out into the sun and the fresh air. The peace job. and serenity from sailing have spilled over into the Chrystal jokes openly about her MS on stage rest of my life." and says, "I'm glad it's okay for us to talk about Avril Roberts is a Toronto-based health writer with how MS affects the mind because there's always an interest in neurological disorders. This special insert was made possible through an unrestricted educational grant from

To read more about emotions and cognition, see the special issue of MS in Focus (Issue 4, 2004) available on the MS International Federation website. Go to www.msif.org and then click on Publications This article originally published in MS Canada, August 2004, p. 4