Losing My Mind, Part One: Experiencing an MS Cognitive Relapse

By Matt Cavallo

Back in October of 2006, I was feeling like I had MS beat. My mobility was seemingly back to normal after losing function the previous year due to an acute onset of Transverse Myelitis. It had also been eight months since a bout of Optic Neuritis had claimed the vision in my right eye. Since then, all symptoms had resolved and I was living a normal, symptom free life. Little did I know that I was about to be thrown into the depths of my scariest relapse, losing my mind.

As the calendar approached the holiday season, I started forgetting things. It was simple things at first, like leaving my keys, wallet and phone on the counter as I walked out of the house for work and locking the front door behind me. While everyone shares these experiences, mine were scary because of the lack of cognitive association. I would look at my keys, wallet and phone on the counter, but couldn’t draw the association in my mind that I needed those things to get to work.

On several occasions, I knocked on my neighbor’s door to use their phone to call Jocelyn at work so she could come home and unlock the door for me. Luckily she worked only a mile away, so she was always able to save me. Even though she was having to save me from situations like this more and more often, I didn’t think I was having a problem.

Next my word association started to fail. I would say things like, “Jocelyn did you put the laundry in the dishwasher?” I would look at a common item like a refrigerator and was unable to call it by name. Instead I would say things like, “you know that thing that keeps food cold.” I was also repeating myself over and over. I remember going out to dinner with another couple and asked ten times in ten minutes whether my friend, John, had heard that our mutual friend, Marc, had his baby. My friend John was getting visibly irritated with me, but I was unaware that I had just repeated myself ten times. Jocelyn spoke up to say that I was having one of my MS episodes.

Still, I didn’t think anything was wrong. I didn’t realize that my work was suffering. I was missing deadlines and turning in incoherent reports. My friends and family were concerned because I couldn’t have a regular conversation. It was like I was there in the room with them, but my mind was locked inside my head and my thoughts couldn’t come out.

Then my cognition started to become dangerous. I love to cook, but I was starting meals and forgetting that I left the oven or stove on. There was one time when I was boiling chicken to make soup, left the house and came back later to have the entire house filled with smoke and the smoke alarm blaring. It was this time when Jocelyn confronted me by saying that I needed help before I hurt myself or others.

This hit me hard. Up until this point, MS had affected me physically but I wasn’t ready to cope with a cognitive loss. I also was not able to comprehend the magnitude of what this relapse was doing to my work and personal relationships or how my inability to process things was putting me in harm’s way. When my wife intervened and told me that I needed help, I didn’t want to believe her. I said that I felt fine and while I was a little forgetful, I was still in control of my faculties. She then pointed out that I almost burned the house down while making soup.

As Jocelyn told me about all my symptoms, I broke down. I realized that I was having another MS relapse, only this time I was losing my mind. If I didn’t see my neurologist, I was liable to lose my job, my friends and possibly hurt myself or others. This was a reality I didn’t want to face. This relapse was by far the scariest because I wasn’t fully aware that it was going on and there were no visual signs of disability. I agreed with Jocelyn and set an appointment for the next available time with the neurologist.

Tune in on October 16 for my next blog about how I was able to cope with and overcome this devastating cognitive relapse.

*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog/

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Comments

  • You are truly an inspiration to me Matthew. I love you Brother.

  • Jessica says:

    This is just another example of your incredible strength Matt. Sharing your story is a great way to raise awareness in general about MS, but it is also a way for friends and family to learn and understand the inner “you”. Relapse or no relapse, you will not lose a friend here.

  • Maureen Miller says:

    My husband, Bill, has MS diagnosed in 1986. Years of very few symptoms.
    He is almost 65 years old. He started having cognition problems about a year
    ago. They still weren’t that bad. But lately he has had some serious
    cognition problems. We will see the neurologist soon.

    • Matt Cavallo says:

      Thank you for sharing Maureen. The cognitive relapse was the hardest to deal with because I wasn’t always aware what was happening. Seeing a neurologist can definitely help steer your course. Best of luck to you and Bill in your journey!

  • Brad Mann says:

    Matt,

    What an important and often overlooked topic. It is very scary when us, those living with MS, can not be sure if we can trust our own judgment.

    Cognitive issues are a very big issue for me and my family as well. You are very fortunate to have a great wife (Joceyln) at your side to protect you when MS flares up. I know I would not be the same without my wife there with me.

    We can not wait to read the part 2 of this blog post. Also, we hope you are working on a follow up book to the Dog Story. It was such a great read!

    Please keep up the great work!

    Regards,

    Bradley Mann (@SleepingWithMS)

    • Matt Cavallo says:

      Thank you Bradley! Having a partner like Jocelyn has made a huge difference in my life. I have been very lucky despite my relapses to have such a loving wife and friend by my side.

  • angela fletter says:

    I have been in remission for years now until I got sick with a really bad sinus infection double ear infection and staff infection. Boy with my immune system being so low that gave my ms the perfect oppurtinty to come back with a vengance. I’m suffering with optic neritus chronic fatigue and my spine is feeling like it wants to explode.I no longer have health insurance so I can’t afford to be put back on all my medecines. Which is very scarey because before I went into remission I was very sick with the ms for 10 years. Now I don’t know where to turn to

    • MSAA says:

      Thank you for your comment, we are sorry to hear that you are having such a difficult time right now. You may want to explore the website http://www.healthcare.gov to see what health insurance options may be available for you. If you need additional assistance please contact our Client Services team at 1-800-532-7667 x 154 or email msquestions@mymsaa.org.

      • Matt Cavallo says:

        I agree with the previous response, Angela. There are many options that can get you the help you need and the services provided by the MSAA are a great place to start. Best of luck my friend.

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