MS and the Mind – multiple sclerosis
MS is not a disease that plays fair. It takes unexpected turns at unexpected times. No one, not the person who has MS nor the most experienced MS specialist in the land, can predict with certainty what any one person’s MS may do. This special section deals with things MS may do to a person’s mind–the “thinking” or cognitive functions, and the emotions.
May do–or may not do. No article in this section will speak to all personal experiences of MS. But all have been prepared in the belief that knowledge is power.
The illustrations have been created by David Hollenbach, a professional commercial artist, as a gift to InsideMS. David lives with MS himself. The woman in David’s picture on the opposite page finds her thinking dimmed. She has lit a candle to compensate.
Experts and people living with MS agree that there are many ways to compensate for mental symptoms. A sense of humor and a bit of patience were mentioned by everyone. These are not hopeless problems.
Still, we know this subject is not an easy one. If anything you read here leaves you concerned or distressed–please tell someone you trust. Get support for how you feel and what you think. Get help with your next decisions. Light a candle for yourself and others.
About MS and My Mind
Readers sent a flood of letters on the subject of MS and their minds. Here are some highlights, reflecting many different experiences and many common themes.
“I’ve had episodes of almost total disorientation. I didn’t mention these lapses to my neurologist during my diagnosis interview because I had no idea they could be MS-related and my neurologist never asked me about mental symptoms.”
–Howard Bell, Minnesota
“I spread my company benefits package out on the kitchen table and stared. It was so beyond what I could deal with I sat there and cried. Eventually I was able to make heads and tails of it but this sort of thing happens more frequently than I like.”
–Sandra Elkins, via e-mail
“I am much more emotional than I used to be, especially right before my period. My neurologist prescribed Wellbutrin. I don’t feel any different, but my coworkers say they notice improvement.”
–Lisa Roesner, New Jersey
“There are times when I cry at a commercial and yet I have to remember to act excited when other people think that’s appropriate. These are signs of depression, but I am not at all depressed. There are times when even simple everyday things can throw me completely. I use self-hypnosis, meditation, and just plain faking to keep a positive attitude–and it works (most days).”
–Eileen Tolan, via e-mail
“I can go from happy to depressed to angry in the snap of a finger. My neurologist prescribed antidepressants, which have helped, but I find I also need to notice and adjust my attitude constantly.”
–Ann Stauffer, Ohio
“My first neurologist said this was all in my head, that I would have to have severe MS and I only had mild. When I switched to a new neurologist I learned that a majority of people with MS have some form of cognitive problem. Hearing that alone helped because I no longer had the stress of thinking I was just imagining things.
“Change doctors if you are told these mental problems aren’t real symptoms of MS!”
–Kathy Abbott, North Carolina
“What saves me is my warped sense of humor. I talk to my disease. I tell it to beat up on the 90% of my brain that I’m not currently using. The honest part of me admits that I was once very arrogant about my mental abilities. Everything came almost too easily. MS has taught me patience and humility.”
–Julie Bushinski, Pennsylvania
“I kept feeling I was having trouble with my memory and it took me a year and a half to remember to ask my doctor about it!”
–Jean Evans, via e-mail
“The thought of asking for help just tears me apart. I’ll do it if I have to crawl to get it done. My most embarrassing moment was a Thanksgiving Day when I forgot how to cook the turkey. I took the easy way out and ordered dinner from Safeway. Hey, I didn’t even have to admit I had forgotten. Did somebody say attitude check?”
–Name withheld, Washington
“I struggle with things like T-shirts because I can’t figure out which is the front and which is the back. I brought up some of the difficulties I was having in my small MS support group. It turned out to be a very tearful meeting as 3 out of the 5 of us have these same weird problems. We all felt such a release to discover we weren’t crazy.”
–Name withheld, California
“I was in the chess club in high school. In seminary I continued to play and win, but while serving in my first church I noticed my power of concentration starting to wane. This coincided with the onset of my MS. Still, I love crossword puzzles and during baseball season I mentally calculate percentages from reports on the radio and check the sports page to see if I get it right. I do. My conclusion? I’m still a math wizard but when it comes to solving the deeper problems in life, I think I will call in the experts.”
–Milton Lentz, pastor emeritus, United Methodist Church, Minnesota
RELATED ARTICLE: Practical Tips
All these suggestions are excerpted from letters and e-mails sent to InsideMS by people who are using them to handle their problems. For the viewpoint of professionals, see page 58.
* The kitchen timer (“for everything from taking the clothes out of the dryer to the time of my favorite TV show”).
* Computer calendars, especially ones that ping.
* Calling your answering machine to record a reminder if you are away from home.
* Lists, lists, and more lists. (“A pad and pencil hanging around my neck would help.”)
* Keeping a sense of humor.
* Post-it Notes–especially on the front door. (Although many people report using them, our experts think sticky notes can cause confusion. They suggest 1 notebook or electronic gadget to be carried with you everywhere.)
* Having a routine.
* Being as organized as possible.
* Breaking projects down into small segments.
* Writing down instructions.
* Taking a break when you feel overwhelmed.
* Stretching your brain with puzzles, games, reading.
* Enlisting friends, family, coworkers (even your students, a college teacher suggested): Let them remind you and tell them it’s OK to correct you.
* Having a specific place for things and putting things back in their place immediately after use.
* Having a calm corner to go to, in your imagination and in your home.
COPYRIGHT 2000 National Multiple Sclerosis Society
COPYRIGHT 2001 Gale Group