The Neuropsychological Evaluation for People with Multiple Sclerosis: Part II

Posted on October 30, 2013 by MSAA

By Dr. Lauren Strober

For many individuals, medical testing, especially testing for cognitive changes, may cause fear or anxiety.

How scary of a process is it? For some, undergoing cognitive testing when one has already noticed a decline is very intimidating – many fear that noticing a change is not as scary as confirming there is an actual change. But, like anything, knowledge is best and with MS, knowledge is the best way to tackle a variable, unpredictable disease. Moreover, more often than not, individuals find that they are doing better than they think and that although there are some weaknesses, they also still have their strengths. Again, knowledge is power.

As far as the process itself, a full neuropsychological evaluation can last anywhere from three to five hours and is typically divided over a few days. Cognitive testing can be extremely tiring and that is not just specific to MS. Many patients report needing a nap after! But, most neuropsychologists are aware of this and will offer breaks and other accommodations to make the experience as painless as possible. After the evaluation is completed, you will receive written and verbal feedback as to how you did and what the recommendations are based on your individual cognitive profile. Such feedback and knowledge of one’s abilities and difficulties can be very empowering and assist individuals with taking the right steps in assuring that they can tackle their MS and its symptoms head on!

If you feel that you can benefit from cognitive testing and/or are noticing changes in your thinking, do reach out to your neurologist or a neuropsychologist in your area today.

*Dr. Lauren Strober is a board-eligible clinical neuropsychologist with over a decade of clinical and research experience in MS. She is a Research Scientist at the Kessler Foundation and presently holds a National Institutes of Health (NIH) grant examining the factors most associated with employment status in MS.

The Neuropsychological Evaluation: Allaying Your Fears and Recognizing its Value for the MS Community Part I

Posted on October 28, 2013 by MSAA

By Dr. Lauren Strober

Many individuals with multiple sclerosis (MS) will begin to notice the subtle cognitive changes typically associated with MS. Individuals may report being more forgetful, unable to multitask as well as they used to, or feeling as if their thinking is slowed down. Some may say, “I feel as if I am just not functioning on all four cylinders.” They would be right. In fact, anywhere from 43% to 70% of individuals with MS suffer from some degree of cognitive dysfunction. Most often, it is slowed thinking or problems with memory that are most noticeable and known to have the greatest effect on day-to-day functioning – this can be anything from preparing a meal for the family, doing everyday tasks, or even successfully doing one’s work.

When cognitive symptoms begin to interfere with such tasks and one’s overall quality of life, it is best to consider speaking to your neurologist about undergoing a neuropsychological evaluation. A comprehensive neuropsychological evaluation consists of a battery of cognitive tests assessing language, attention, verbal and visual memory, processing speed/working memory, and executive functions (e.g., planning, organization, reasoning) as well as a full psychological evaluation assessing things like mood, anxiety, sleep, and fatigue. These latter factors are known to also play a large role in cognition and are, fortunately, reversible with effective treatment. For instance, while slowed thinking is common in MS, consistent poor sleep or depression can also lead to cognitive disturbances during the day and further compound existing cognitive disturbances. Thus, proper identification of one’s current cognitive abilities as well as factors that can affect cognition (such as poor sleep) is the first step in taking appropriate steps in managing any cognitive changes associated with MS.

So, when is a neuropsychological evaluation right for you? Again, if you are noticing changes and feeling that they are beginning to impact your daily functioning and quality of life, you should consider having a neuropsychological evaluation. This is particularly important if you are employed and/or are a student and can benefit from some recommendations and strategies as to how best maintain your job or schooling, while working to your strengths and minimizing reliance on your weaknesses. Formal documentation of such cognitive difficulties can also assist with obtaining appropriate accommodations at work or school. Finally, some recommend completing a brief neuropsychological battery such as the Minimal Assessment of Cognitive Functioning in Multiple Sclerosis (MACFIMS) at the onset of one’s illness so that there is a baseline to which patients can better monitor the progression of their illness and cognitive changes associated with such.

If you think neuropsychological testing might be helpful for you, stay tuned for PART II on Wednesday to learn more.

Dr. Lauren Strober is a board-eligible clinical neuropsychologist with over a decade of clinical and research experience in MS. She is a Research Scientist at the Kessler Foundation and presently holds a National Institutes of Health (NIH) grant examining the factors most associated with employment status in MS.

Losing My Mind Part Two: Overcoming an MS Cognitive Relapse

Posted on October 16, 2013 by MSAA

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/

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

Posted on October 9, 2013 by MSAA

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.

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