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About MS and MY Mind
Copyright © National Multiple Sclerosis Society, 2003

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

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 "Palm Pilots and Post-it Notes" in the article entitled "Memory and Problem Solving".

  • 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.
  • Planning.
  • Enlisting friends, family, co-workers (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.

For additional information:

This article originally appeared as a special section in the Spring 2000 issue of InsideMS.


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