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