Life with MS and Cognitive Issues: You Never Know What to Expect

By Jeri Burtchell

Ever since telling my family and friends I’d be writing a blog post for MSAA on the topic of cognition, they have been ribbing me. The irony of the most absentminded person they know writing about memory loss is too amusing to ignore.

All kidding aside, cognitive issues can be a serious and bewildering symptom of MS. One that can creep up stealthily and impact every area of your life–and it’s more common than you might think.

My reputation for forgetfulness goes back a long way, predating my diagnosis of Relapsing-remitting MS in 1999. I’ve had memory problems for as far back as I can recall.  However, how far back I can recall is debatable.

I start each day with my cognitive cup full. In the stillness of a quiet house at 5 a.m., I approach life hopeful for a day filled with accomplishments. Morning is when I do my best thinking. But I know what’s coming and I prepare in advance.

As surely as the sun crosses the sky, I’ll begin my descent into a foggy, cognitive swamp by midafternoon.  Having a plan that helps me get through the day without being overcome by frustration is kind of like having a little set of crutches for my brain.

A huge dry erase board serves as my calendar. Using multicolored Post-it Notes, I translate my life’s chores, celebrations and obligations into a color-coded explosion of reminders. When a fleeting thought of something important lands briefly on my conscious mind, I grab it and quickly trap it in a sticky note. The important thought is added to my calendar, displayed like a butterfly on a pin board.

Green Post-it Notes are work-related and sprinkled all over the board. Yellow is for appointments and domestic duties; pink reminds me to pay the bills. Orange is for anything related to the kids, who have so many extracurricular activities that even a fully functioning brain would have trouble keeping up.

Although it all sounds good on paper, in reality, I’m grasping at straws. I frequently find myself herding well-intentioned sticky reminders from left to right in a multicolored cattle drive across the calendar as accomplishments go unfinished.

So why does this happen when I’m determined to plan out my day? Well, because of websites like Facebook and Pinterest. Or it could be as simple as someone asking me a question that leads my brain astray.

“Jeri, do you know where the phone book is?” my mother asks.

“No, Mom, let me look around.” I reply.

Fifteen minutes later, the Great Phone Book Hunt has yielded nothing, I end up Googling the number for her instead, and whatever task I was working on has slipped to the bottom of the cognitive swamp, totally forgotten.

Thankfully, even though my family members tease me, they are my safety net as well. Intuitively, everyone seems to have found their own way to help me stay on track.

My mother, who will be ninety next month, is an expert in the art of the gentle reminder. She keeps her own lists of what I should be doing and gives me a subtle nudge if she sees my memory falter. She does it with such finesse that a politician would be impressed.

The kids and grandkids know that telling me something important once is not enough. I need daily phone calls, texts, or emails to refresh my memory about picking them up at school or taking them to practice.

Although nobody gets angry when I come home from the grocery store without the bread or milk, there might be some exasperated eye-rolling when I explain that I forgot to even look at the list.

I once had to mail a package with only fifteen minutes to spare. I jumped in the car and raced straight there only to get out of the car and look around puzzled. I wasn’t at the post office. I was at the grocery store on the other side of town. Daydreaming about what to fix for dinner had apparently determined my route. Rather than obsess about how I could possibly have done that, I decided to make the best of things. I went grocery shopping.

Living with cognitive symptoms of MS can be challenging. It takes planning and teamwork to pull off a day that, for anyone else, would seem routine and uneventful. Failing at that now and then can be frustrating, but I try to keep things in perspective. As long as I haven’t forgotten to feed my family or pick someone up who was waiting for a ride, then I can forgive myself the other slips.

Living with cognitive problems isn’t all bad – in fact, there is an upside. I can read a good book several times and the ending still surprises me. I forget arguments as soon as they are over, so forgiving takes no effort. I could probably plan my own surprise party!

And even though my family might rib me about my memory from time to time, the simple act of everyone doing their part to help out seems to have brought us all closer together. I’ll have to jot a reminder to thank them for that – if I can remember where I put my Post-it Notes.

*Jeri Burtchell was diagnosed with multiple sclerosis in 1999. She has spoken from a patient perspective at conferences around the country, addressing social media and the role it plays in designing clinical trials. Jeri is a MS blogger, patient activist, and freelance writer for the MS News Beat of Healthline.com. She lives in northeast Florida with her youngest son and elderly mother. When not writing or speaking, she enjoys crafting and photography.

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Comments

  • Julie says:

    This is something at 39 I am desling with constantly. I on e was supposed to follow my husband to drop off his car and just kept driving. I was 1/2 mile away before i realized what i had done. I also lose easy words that my family always tries to find for me. I constantly feel like I’m getting dumber everyday. I am so frustrated and theres nothing I can do about it! I UNDERSTAND!

    • Jeri Burtchell says:

      Hang in there, Julie! Knowing you’re not alone helps. All we can do is try, right? Maybe there will be a cure soon… and barring that, maybe some treatment to enhance our cognition. Fingers Xd!

  • Jessica Petroff says:

    Very witty article and as always I enjoy your writing. What would we do without our dry erase calendars, phone reminders and post-it-notes? I have good days and bad days and like you, fatigue is a huge contributing factor to my cognitive issues.

    Keep on keeping it “real” Jeri!

  • clara wackerfuss says:

    I fully appreciated your comments Jeri, I was diagnosed with ms may of 2012 and I am 58 years old. I’ve had some symptoms as a younger person but was always diagnosed with stress or others issues and to take a vacation. My symptoms were never debilitating mind you, (except for my bathroom issues for years, I know where every public restroom is in Phoenix :) ). Your comments on congnitive problems hit the nail on the head for me. My loving husband constantly reminds me to write it down! Do I remember? No, I’m usually in the middle of something else when I think of something I need to do and forget. All I need is for someone to mention a thought to interfere with mine and I float in another direction. What bothers me equally if not more is the drunk feeling I sporatically have. I have had to cancel jobs quite a bit because I am not able to drive. (I am a housekeeper and thankfully I have understanding clients) But I’m trying to deal with it by viewing it as a day home to get things done around here. I don’t deal with changes very well and I find this very frustrating. I first had this happen in January for a few weeks and my neurologist had another MRI done which showed no active lesions so my medications are working. I had errands to run today but I had the drunk feeling come on so I decided to try to find a blog on the msaa website. Something my husband suggested for awhile. Im not much into computers but Im glad he did.

    • Jeri says:

      Clara, I can completely relate to the frustration you feel. Just yesterday I called home because I forgot to bring the shopping list. There were only 5 items I needed to get, but after my boyfriend recited them to me I had to have him start over because I’d already forgotten them as soon as they hit my ear. We ended up staying on the phone while I shopped. It just worked better to hear them one at a time.

  • Laurie Edwards says:

    Oh boy, all that sounds like my life with MS.

  • Theresa Christensen says:

    AT 50 I was diagnosed with primary progressive MS. My memory was my main problem. I too tend to forget words, names, times everything. Attending nursing school I went to my physician to see what the problem was. After numerous tests it was determined I had MS. Memory is my worst when under pressure and tension. As I don’t have any children and my family doesn’t live close my main and most important helper is my husband. He is a saint. He gets very frustrated with me in trying to assist me but running a business and having a farm besides he does wonderful. This is a daily thing. I really appreciate everything he does for me.

    • Jeri says:

      What a difference helpers like your husband can make, Theresa! I’m so glad you have him. For me, my biggest helper is my 15 year old son. He’s very understanding and patient — probably the most compassionate person I’ve ever known. I think that’s a byproduct of growing up with a chronic illness in the family.

  • Kathleen Worth says:

    I can relate to this as a family member of someone with MS. My mother had MS and I watched her struggle with memory issues up until her passing. Now my husband was diagnosed Dec. 2012 with MS and I am seeing memory issues in him start. We try and find the humor in it and take each day as a new adventure. My prayer is that they hurry up a find a cure for this very cruel disease.

    • Jeri says:

      Bless your heart, Kathleen!! What a full plate you got with the whole MS experience. You husband is lucky to have you. Humor comes in handy when the only alternative is to cry. What can you do but take like with MS as it comes? I’m right there with you…hoping for a cure.

  • Pat Davis says:

    I completely understand. There have been times when I have found moldy food in the microwave, not knowing when or why it was there. I have missed appointments. Daily I must check my calendar to orient myself for that day. It’s a struggle, but my family and friends help me when they can to serve up little reminders or help finish a simple sentence even. Take each day as it given to you. I struggled for 8 yrs to get a diagnosis, and finally received diagnosis in June 2013. I am doing injectable treatment for my MS. God Bless…

    • Jeri says:

      Helps to know we’re not alone, right Pat? I had to laugh at the moldy food in the microwave. Been there, done that. Can’t tell you how many times I’ve put my coffee in there just to warm it up but even 30 seconds is too long to keep my attention. If I walk away and don’t hear the ding, I am seriously wondering where my coffee got to a few minutes later.

  • Sean Bennick says:

    I don’t yet have a diagnosis of MS, but this is the perfect representation of my daily struggles with my memory and other cognitive issues. Thank you for writing this more clearly than I have been able to express recently.

    • Jeri says:

      {{{hugs}}} I’m so sorry you are having to deal with this. It can be so frustrating.

      Honestly, it took me so long to come back and check for comments to respond to because I forgot all about writing this post.

      We can only do what we can do, though. Use all the tools you can conjure up and when that fails, forgive yourself the little things.

      Getting stressed out and trying too hard only makes the cognitive issues worse.

  • Joanne Boudah says:

    My mom was diagnosed with Cognitive MS October 2012 at 52 years old. This was a big shock to all of us, we found her in her car hunched over her steering wheel after having a seizure, it took 2 weeks before they diagnosed her. My family and I had no idea she had MS and neither did she, she refused to go to drs. Its been a year and her memory goes in and out she has her good days and bad days, we’ve had her in a nursing home because we are unable to care for her 24/7 and her husband is an alcoholic who is not able to care for her. Its been a rough year my Uncle and I are her conservators which is a lot of responsibility, we try so hard to help her and get her to write things down and do things for herself as well as keep active cause she has coordination problems, she always gets sidetracked saying she needs us to do it with her, but this is hard cause we have to work my uncle cares for their elderly mother and I care for my husbands elderly grandmother as well as my children, this is why we have her in a home to try to help her get the care and rehabilitation she needs and keep her safe cause she does not remember where she is going or what she is doing. I do not know much about progressive cognitive MS but her dr says since the bad seizure nothing is reverseable. I am hoping someone who knows about this disease can help me with some ideas on how to help my mom live more comfortably and what could help her cause she cries a lot and gets depressed cause she is sick, we take her out for the day 2-3 times a week and bring her home for holidays and special occasions but she is always quiet I just want her to be happy but I don’t know what to do anymore I’m exhausted and stressed.

    • MSAA says:

      Thank you for your comment. If you would like to discuss this situation further I would encourage you to call the MSAA Client Services Helpline at 1-800-532-7667 x 154.

    • Jeri says:

      I am so sorry for your mom and her situation. I am 52 myself and it really hits home how much worse my own MS could be. Definitely reach out to MSAA at that number and get some counseling. There is so much help out there. Don’t give up.

      Hoping a cure comes soon. So many out there just like your mom, living lives that are so tough. Blessings to you all.

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