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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Stay on the Tracks….

Many of us have taken different modes of transportation throughout our lives. Some of these modes have included various types of trains, trolleys, and subway cars,
all of which have one common purpose: to remain on the tracks provided to get to the desired destination safely. This may be an easier task for these transportation vehicles than trying to stay on track during everyday life. Keeping things organized and staying on course can be difficult with life’s unpredictable moments and events. This can be especially true when dealing with an illness like MS, a disease that proves unpredictable itself. So how does one try to stick to the tracks when life comes by and occasionally swipes you off course?

Here are some ideas on how to stay on track while dealing with life’s roadblocks:

  • Make lists! Prioritize your responsibilities and tasks so that you can make adjustments if something throws off the day’s expected course.
  • Write notes or use a tape recorder for the day. This can help you organize and remember things to be done. This can be especially helpful if something else comes up unexpectedly, you have the notes to remind you what needed to be done!
  • Reach out for resources and support. There may be ways to receive help to keep things in order for your routine. Asking others for help or making sure someone else is aware of your anticipated tasks/goals can aid in keeping things on track.

What are some things you do to try and stay on track?
 

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October Artist of the Month: Celebrating the Work of Artists Affected by Multiple Sclerosis

MSAA is very proud to present our 2013 Art Showcase – celebrating the work of artists affected by MS.

We have received many wonderful submissions from across the country and are delighted to share their work and their stories with you. Please visit our online gallery to view all of the MSAA Art Showcase submissions.

October 2013 Artist of the Month:
Tammy Jennings – Monterey, California

Ocean Wave by Tammy Jennings - MSAA October Artist of the Month

Ocean Wave

Tammy Jennings - MSAA October Artist of the Month

Oahu

 

 

 

 

 

 

 

 

 

 

 

 

 

 

“My name is Tammy Jennings and I lived in picturesque Monterey, California. I am a 53-year-old, single woman, and I have been living with Multiple Sclerosis since 1996; I was 37. I worked full-time until December 2006 when I had to “retire” as the unpleasant “side-effects” of my MS became too much to handle in a work environment. As a result, I had a lot of free time. So I spent the first few years visiting relatives that I hadn’t been able to see when I was working. My cousin, Joyce Quaglino, was one of those relatives. She can take all the credit for introducing me to the wonderful world of painting. I believe EVERYONE can paint, mainly because it is almost mistake proof. Some of the worst “mistakes” turn out to be the most beautiful paintings! The inspiration for the paintings submitted was the ocean. And Hawaii being one of my favorite places in the world, I took a picture of a sea turtle (Honu in Hawaiian) and painted it when I got home. I hope you enjoy them as much as I enjoyed painting them.

Both paintings are Acrylic & Oil. First I complete the main painting in acrylic, then go back and touch it up with oil to make it “pop” (as my cousin says).”

Read more

Be inspired – please send an online card featuring artwork by MS artist Tammy Jennings and spread awareness of MS and MSAA.

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The American Way of Life for Women (aka spouse, mother, employee, daughter, sister, caregiver, advocate)

By Cindy Richman

Don’t you all agree something’s gotta give? In the twenty-first century I really had high hopes for my daughters’ and son’s futures. I anticipated serious discussion and change around work/life balance issues. Instead we have one disaster after another at home or abroad, and ultimately the entire US government is shut down! No time is spent on how we particularly as women go about improving the business of living our everyday lives.

If you are like me, you live like someone is chasing you trying to get everything done on time and fulfill the many roles you play from a mother, to an employee, to a caregiver. Expectations can be unpredictable and change may come in a moment’s notice. Your child has 102 fever and you need to get to the school ASAP. You worked late and the dinner you planned will take too long to cook and everyone is already starving. You have MS and you promised your son you would go watch his game, but you worked all day and have to work again tomorrow and you feel like you can’t take one more step.

“So what’s the solution?”, you ask? The solution is different for everyone, of course. The solution is particularly challenging when you are living with MS or loving and caring for someone who has MS. Living life in America today without a diagnosis or even a short term illness is really over-the-top to begin with and then adding MS into the mix is really signing on to be superwoman! One of the simple things I think we can all do right away is to try and take just a little bit of time for ourselves.

Beware, you will really have to make a thoughtful effort to do this because many women put everyone else’s needs first and completely forget about what they need. Even if the time is only 20 minutes or less to start, just begin practicing getting back in touch with yourself and being present in the moment. It could be as simple as appreciating the scent in a garden or reading a few lines of a poem that speaks to you before you hear the sound of someone’s voice demanding the next thing on the to-do list. The unpredictable life continues…

*Cindy Richman is the Senior Director of Patient and Healthcare Relations for MSAA

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Follow the Yellow Brick Road: Planning Ahead When You Have MS

Have you seen the car commercial recently where someone says something along the lines of, “we have to do something about this car”, and the little yellow line pops up and guides them to where they need to be? Wouldn’t that be wonderful, if for every problem in life that we encountered, a little yellow line helped guide us to the right choice?

Although there are no yellow brick roads guiding our way, we do have a chance to prepare ourselves for our future. I have always held true the saying, “hope for the best, plan for the worst.” Although I may be called a cynic for thinking this way, I always feel it is best to have a plan in case things don’t work out the way they were expected.

For individuals faced with a chronic illness such as MS, keeping on track and following the plan are two very important steps. From the very first doctor’s appointment a plan is created; what medications to take, what testing to have completed. It becomes part of a routine. But what happens when that plan falls apart? Maybe you need to switch medications, or you are unable to continue working. You may find yourself asking, “now what’s the plan?”

Having the next step in mind is a way to try and avoid the panic that may set in when life throws you a curve ball. To help keep on track with your MS, it is important to work with your doctor not just about the present MS challenges, but also consider planning for the future. Creating a plan about who to call and what to do if you feel as though you are having a relapse may make the experience feel a little more in your control.

Also, having discussions with family regarding long term plans and making small changes that may assist down the road can lead to less confusion and uncertainty in the future. Perhaps you’ve thought about moving to a more centralized location with more resources, or downsizing to a smaller more accessible home. For some people, these are important considerations for their future plan. What plans have you created or thought of for yourself? Looking back at your life, do you see any areas where you wish you had made a plan?

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