By Matt Cavallo
In my last bog, I was in the throes of severe MS cognitive relapse. My short term memory was shot. My word association was gone. Everyday situations confused me. I was a danger to myself and those around me and yet I couldn’t comprehend that something was wrong with me. It took an intervention by my wife, Jocelyn, to get me to schedule a neurologist appointment.
The neurologist immediately sent me for MRI studies. Fitting for the holiday season, the contrast dye administered during the studies lit up the active brain lesions on my films like a Christmas tree. It was recommended that I started a course of treatment immediately.
I found myself isolated in an infusion clinic, depressed that MS had caught up to me again. I was scared. This relapse had affected my ability to work. I had missed time with my mobility and vision relapses, so I was afraid that this would be the final straw at my company. I couldn’t afford to lose my job, not around the holidays. Not because of MS. I also needed to get my mind back. In order to do so, I needed a plan. Here is what I did:
- Get a doctor’s note: I had my neurologist write a letter to my boss explaining my limitations. I also had the doctor talk with my wife to help convey my situation.
- Meet with your boss: I dropped the letter off at the office and had an honest conversation with him about my relapse.
- Create task lists: I got a notebook and listed the things I needed to do each day. I would cross things off the lists as I accomplished them.
- Leave sticky notes: I put sticky notes around the house that said “TURN OFF”, “CLOSE ME” or “FLUSH”.
- Keep your mind active: I found that reading, writing, crossword puzzles, Sudoku’s or any kind of thinking activities helped with my word association, recollection and memory.
It was early January 2007 and I was two months past my cognitive relapse. Things were becoming crystal clear again in my mind. I was back at work and benefited from a slow holiday season. My boss made accommodations for me and kept me on light duty until I was able to perform all the tasks of my fulltime job. I had made some delicious holiday meals without burning down the house and was able to have an intelligible conversation.
Jocelyn comes home from work, smiles and says, “I’m pregnant!” She grabs me and hugs me in the joy of all we had to overcome to conceive. I knew then that I was going to have to work harder than ever because I never knew when MS was going to strike again. So I set goals for myself that I wanted to accomplish and set out to accomplish them, despite the cognitive issues.
I dusted off an incomplete first draft of my memoir and spent hour after hour writing the story of my MS. My wife and I worked on it together. The writing and the conversations I felt helped rebuild my cognition and my mind was coming back with each page I wrote. Finally, the goal of being published happened in June of 2012 on my seventh anniversary of my MS diagnosis.
During that same month, I graduated with my Master’s in Public Health Administration. I had returned back to school to better understand the health care system to help make a difference in the lives of patients like me. I graduated with a 3.98 GPA, which was the highest in the program.
To realize these goals despite the challenges I’ve experienced with MS is incredibly meaningful. I cannot control what MS does to me, but I can do the best I can with what I’ve got. With my Master’s degree and published memoir, I have accomplished things that I never intended on doing prior to MS. Whatever your goals are if you set your mind to it you will be surprised at the results. If I can do it, you can too!
*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/
Hey Matty:
I don’t know if you remember me, but I went to Fairfield U with your brother. I was so sorry to read about your illness and your relapse. I can relate to your frustration. In 2005, I was diagnosed with a “benign” brain tumor. It was treated aggressively (radiation/oral chemotherapy pills) and was going away after 2 surgeries. I was then very lucky and in 2006, I went into remission. In March of 2010, I was told that it had begun to grow back. After another craniotomy/tumor removal, I was placed back on Chemo. Everything, once again, started to go in the right direction until last November. The tumor had grown more than halfway back and was now a stage 4 glioblatoma multiforme (<– the most deadly form of brain cancer). I had to have two more surgeries and I am still getting IV Chemo (in fact, I go again tomorrow). I wish the doctors had told me about "Chemo brain." I can remember things from a long time ago, but my short term memory is rotten. Like you, I leave stick up notes every where and I have to make constant notes about conversations because I will completely not remember them. I had to quit my job and go on disability.
I wish you the best in everything. I know it sounds clique, but keep on keeping on and fight as hard as you can. I hope that it will get better for you. You are in my thoughts and prayers.
Love, Kim
Hi Kim!
Thank you for sharing your story. So sorry to hear all that you have gone through since your time at Fairfield. You said it best, “keep fighting”. No matter what life throws at you just continue to do the best you can with what you’ve got. I’m glad that you have strategies to manage your short term memory. Nothing is more frustrating than a short term memory loss, but having strategies to cope and overcome is the most important thing to deal with the loss. Stay strong and keep fighting my friend.
Take care,
Matt
This is several years after this was posted, I know, but I just wanted to say how grateful I am that you wrote this. I’ve had MS for the past eight months (we think; I was only diagnosed two months ago) and I’m currently experiencing cognitive fog and other problems. I’m trying to finish my PhD thesis and in past weeks I’ve found myself writing the same thing over and over, and unable to make connections between facts. It wasn’t just my thesis – at one point I was having to write notes like ‘Put shoes on’ or I’d forget. It’s terrifying. I feel like I’m losing my mind or that it’s shrinking and there’s a white cloud where areas of my brain used to be. I was so glad to read this and know that it will get better. I’ve been trying brain-sharpening exercises to help speed it along, but I’ve also been scared s***less that I’d be stuck like this for good. I feel like there’s light at the end of the tunnel now.